The Buckles Family
Formerly Conjoined Twins: Miracle Girls
Tuesday, December 25, 2007
Merry Christmas and Happy Holidays Everyone!! We have had a fantastic
day, and we are absolutely blessed to have all of our children here
with us. Surprisingly, the girls did not wake up at the crack of dawn
this morning, as we expected. However, when they did wake up, they
were excited beyond belief. When you allow yourself to see things
through the eyes of a child, it is easy to experience the wonder and
magic of this special day. We once again want to thank everyone whose
generous donations made our children's day even more wonderful. You
truly gave them a Christmas!
We're exhausted and therefore going to bed, but I will update again tomorrow about all of the things I've forgotten in the past few days. We hope all of you have had a blessed day filled with love!
We're exhausted and therefore going to bed, but I will update again tomorrow about all of the things I've forgotten in the past few days. We hope all of you have had a blessed day filled with love!
Sunday, December 23, 2007
WE'RE BACK!!!! We were once again up in Baltimore, MD for the past two weeks participating in physical and occupational therapy for Erin and Taylor at the Kennedy Krieger Institute. They did amazingly well, as always, and we want to thank everyone up in the International Center for Spinal Cord Injury for the outstanding work that you do each and every day!! Thank you Miss Becca, Miss Kristin, and Miss La'Tai for working so hard with Erin to get her to where she is now. Thank you for participating in her recovery process and for helping to make her independent. Becca, Erin insists on doing most of her dressing and undressing herself. Thank you! La'Tai was able to convince Erin to start using crutches now while in her RGO's instead of her walker. It is so fantastic to watch her with this new skill and know that she will soon be doing it on her own. Thank you La'Tai! We also want to thank Miss Jess, Miss Judith and Miss Beth for working with Taylor. She has come so far, we cannot believe it. Just a few months ago she wasn't even able to walk on her own, and now she can jump rope!! Wow!!! Many of you have been asking about Taylor's sensation, so here is an update: she still has no sensation on the right side of her right foot and leg. She does have some feeling, although not "normal", in the rest of her foot and leg. I'll definitely take that over what she had. She has gained a great deal of strength and endurance, and she works so hard to improve her situation each day. Way to go Taylor!! As for Jade, she played with just about every therapist and patient in the entire gym. She loves to help out in any way that she can, even if that means just distracting someone while they are doing a difficult task. I'm so proud of her for being so good and keeping herself occupied during the times when we had to help with her sisters.
On our first day in Baltimore, we participated in a photo shoot for RTI (Restorative Therapies, Inc), which is the company that made Erin's bike. It was exciting and exhausting at the same time, and then we had to go to a full afternoon of therapy! Thank you Judy Klein for helping to entertain our girls in between shots and for being so patient with three little girls who don't always smile at the same time. We also want to thank RTI for the gift cards to Barnes and Noble -- as many of you know, we love to read!
We made some wonderful new friends while we were at KKI. Our little friend Alec, who just turned two on Saturday (Happy Birthday, Alec), is absolutely adorable. We all fell in love with him and his little brother, Brenden, who is only 3 months old. Their parents, Chad and Carrie, have a lot on their hands, but they handle it all with Grace and much strength. It was an honor and blessing to get to know them. If you would like to learn more about Alec, you can check out his website at www.carepages.com. I believe you will have to create an account in order to look at his site. Let me know if you have issues. We also made another great new friend, Sophie, who played with Taylor a few times during their therapy. You can learn more about Sophie by clicking on her name. The girls also fell in love with a little girl named Shania, who is also in a wheelchair. Erin was so excited to have a new friend just like her. We also enjoyed spending time with our friend Darrin and his mom, Rosemary, at therapy and at the Ronald McDonald House. Erin told Darrin's mom that she and Darrin will walk together someday. Talk about out of the mouths of babes! We met so many other kind people while in Baltimore, and we are thankful for the opportunity.
Our Ronald McDonald House stay was absolutely amazing once again. The people who work and stay there are fantastic, and we are always blessed to meet the many generous groups who come in to bring the families a home cooked meal each night. Thank you for alleviating some of our stress by allowing us to relax in the evening after long days of hard work. We were also brought to tears by the amazing generosity of the people who came in to share some of their Holiday spirit and love with the children in the house. We witnessed great giving by people with even greater hearts. Thank you from the bottom of ours. For those of you who consider giving during the holidays (time, money, gifts) or anytime, please consider your nearest Ronald McDonald House, or you can give to the Baltimore Ronald McDonald House if you feel a connection through us. You will have an impact on each and every family who stays there.
We also want to take a moment to thank Stafford Crossing Community Church, our local Christian radio station PER (89.9/90.5) and especially our friend Terri for giving us such a fantastically generous gift this Christmas. There is just no way to appropriately thank you for giving our children a Christmas they will remember. Our hearts are bursting with the love you have shared. We very humbly thank you!
Our schedule was so extremely busy while we were in Baltimore, and we still have not recovered. Taylor and Jade have colds, which we are trying to prevent from moving on to Erin (like we have any say). She has only really had two colds, and she ended up in the hospital both times. It is a dangerous time for her, as she is not able to cough very effectively, so she cannot clear her lungs. If she gets something, it hits her quickly, and we will have to respond accordingly. So far, so good though; keep your fingers crossed!
KJ is off of school for a little over a week, and he will be staying with us almost the entire time. We are all very excited to be able to spend that much time with him! Hopefully he will have a nice, relaxing break before going back to working hard. We are really very proud of him.
Anticipation for Christmas is growing exponentially with each passing day. I can't wait to see everyone's face on Christmas morning, and the beautiful smiles we will witness throughout the day (well, we get to see those every day, actually). However, there is something magical about this time of year that makes everything extra special. The greatest thing for us is to know just how thankful our family is for everything that we have, and to share with the world the miracle that we call our family.
I will post new pictures soon from our stay in Baltimore. I have so many to go through, but I will do my best to get them up before it is time to post pictures of Christmas.
We hope everyone is surrounded by love this holiday season. Thank you for checking on us during this very special time. If I don't have a chance to say it later, Merry Christmas everyone!!!
On our first day in Baltimore, we participated in a photo shoot for RTI (Restorative Therapies, Inc), which is the company that made Erin's bike. It was exciting and exhausting at the same time, and then we had to go to a full afternoon of therapy! Thank you Judy Klein for helping to entertain our girls in between shots and for being so patient with three little girls who don't always smile at the same time. We also want to thank RTI for the gift cards to Barnes and Noble -- as many of you know, we love to read!
We made some wonderful new friends while we were at KKI. Our little friend Alec, who just turned two on Saturday (Happy Birthday, Alec), is absolutely adorable. We all fell in love with him and his little brother, Brenden, who is only 3 months old. Their parents, Chad and Carrie, have a lot on their hands, but they handle it all with Grace and much strength. It was an honor and blessing to get to know them. If you would like to learn more about Alec, you can check out his website at www.carepages.com. I believe you will have to create an account in order to look at his site. Let me know if you have issues. We also made another great new friend, Sophie, who played with Taylor a few times during their therapy. You can learn more about Sophie by clicking on her name. The girls also fell in love with a little girl named Shania, who is also in a wheelchair. Erin was so excited to have a new friend just like her. We also enjoyed spending time with our friend Darrin and his mom, Rosemary, at therapy and at the Ronald McDonald House. Erin told Darrin's mom that she and Darrin will walk together someday. Talk about out of the mouths of babes! We met so many other kind people while in Baltimore, and we are thankful for the opportunity.
Our Ronald McDonald House stay was absolutely amazing once again. The people who work and stay there are fantastic, and we are always blessed to meet the many generous groups who come in to bring the families a home cooked meal each night. Thank you for alleviating some of our stress by allowing us to relax in the evening after long days of hard work. We were also brought to tears by the amazing generosity of the people who came in to share some of their Holiday spirit and love with the children in the house. We witnessed great giving by people with even greater hearts. Thank you from the bottom of ours. For those of you who consider giving during the holidays (time, money, gifts) or anytime, please consider your nearest Ronald McDonald House, or you can give to the Baltimore Ronald McDonald House if you feel a connection through us. You will have an impact on each and every family who stays there.
We also want to take a moment to thank Stafford Crossing Community Church, our local Christian radio station PER (89.9/90.5) and especially our friend Terri for giving us such a fantastically generous gift this Christmas. There is just no way to appropriately thank you for giving our children a Christmas they will remember. Our hearts are bursting with the love you have shared. We very humbly thank you!
Our schedule was so extremely busy while we were in Baltimore, and we still have not recovered. Taylor and Jade have colds, which we are trying to prevent from moving on to Erin (like we have any say). She has only really had two colds, and she ended up in the hospital both times. It is a dangerous time for her, as she is not able to cough very effectively, so she cannot clear her lungs. If she gets something, it hits her quickly, and we will have to respond accordingly. So far, so good though; keep your fingers crossed!
KJ is off of school for a little over a week, and he will be staying with us almost the entire time. We are all very excited to be able to spend that much time with him! Hopefully he will have a nice, relaxing break before going back to working hard. We are really very proud of him.
Anticipation for Christmas is growing exponentially with each passing day. I can't wait to see everyone's face on Christmas morning, and the beautiful smiles we will witness throughout the day (well, we get to see those every day, actually). However, there is something magical about this time of year that makes everything extra special. The greatest thing for us is to know just how thankful our family is for everything that we have, and to share with the world the miracle that we call our family.
I will post new pictures soon from our stay in Baltimore. I have so many to go through, but I will do my best to get them up before it is time to post pictures of Christmas.
We hope everyone is surrounded by love this holiday season. Thank you for checking on us during this very special time. If I don't have a chance to say it later, Merry Christmas everyone!!!
December 13, 2007
Hello Everyone! We just wanted to post a quick update to let you know that you will be able to see our beloved Ronald McDonald House on the Food Network. The Ace of Cakes taped his holiday show at the Ronald McDonald House while we were there, and it is airing tonight at 10:00 p.m. Eastern time. You may be able to see the girls at some point during the show, and we're excited to share our second home with all of you.
We've been extremely busy and have had lots of exciting things going on. I will fill you all in this weekend.
We hope you have a great day. As always, thank you for looking in on our family.
We've been extremely busy and have had lots of exciting things going on. I will fill you all in this weekend.
We hope you have a great day. As always, thank you for looking in on our family.
December 5, 2007
For anyone who is interested, we have found a way to help raise money to modify our home. There is a site called www.iGive.com. Through this site, you can do all of your online shopping at many, many stores that you know and love. When you make a purchase, a percentage of it will go toward our cause, which is the Erin Buckles Spinal Cord Injury Fund. In fact, you do not even have to purchase anything for it to benefit the cause. They have something called a "Surfathon", and the more people that just surf the sites enters our cause into a contest. The winners receive a $1000 donation to their fund. Please just check it out. It's free to join. If some of you do your Christmas shopping online, you can buy gifts for your loved ones and help Erin to have a house where she can be independent and mobile.
Wednesday, December 5, 2007
The girls are absolutely bouncing off the walls today. We are getting our first snowfall -- Yeah!!! Jade keeps running from the back of the house to the front of the house, looking out the windows and screaming, "Look at all of the snow out here!!" She's so adorable! Taylor thinks it looks like we are in a snow globe. Sweet girl! Erin just keeps singing, "It's snowing, it's snowing!" Too much excitement. The funny thing is that the flakes are pretty small and most of it is melting once it hits the ground, but the grass has a dusting. They all want to go out to "play in the snow". I'm not sure there's even enough to play in, and we'll probably come in more muddy than anything, but I don't want to smother their excitement. It was difficult to keep Taylor on task this morning as we were working on her schoolwork, but she loves to read, so that helps.
We're all doing well, as you can tell. We've been listening to Christmas music everyday, and we put up some of our decorations last week. All we need now is the tree, but we will wait for the week before Christmas to get that. The girls have Advent calendars, and they love to open a new door every day to find a piece of chocolate waiting for them. Erin wants to open all of her doors all at once (because she loves the chocolate). So cute!
We will be meeting with the Paws for People group right before Christmas to plan out our community service/awareness projects. We're so excited to get started. Erin still talks about getting her service dog all the time, and she knows her friend Grace is getting one as well. Grace has some pictures up on her website with one of the service dogs, and Erin loves to look at them. We hope to be able to go up to meet all of the dogs in training soon.
Well, I need to go. The girls can't wait any longer! We hope you have a wonderful week. Thanks for checking on us! Please keep all of the families out there who have sick children in your prayers. This time of year is especially hard for kids to be in the hospital.
We're all doing well, as you can tell. We've been listening to Christmas music everyday, and we put up some of our decorations last week. All we need now is the tree, but we will wait for the week before Christmas to get that. The girls have Advent calendars, and they love to open a new door every day to find a piece of chocolate waiting for them. Erin wants to open all of her doors all at once (because she loves the chocolate). So cute!
We will be meeting with the Paws for People group right before Christmas to plan out our community service/awareness projects. We're so excited to get started. Erin still talks about getting her service dog all the time, and she knows her friend Grace is getting one as well. Grace has some pictures up on her website with one of the service dogs, and Erin loves to look at them. We hope to be able to go up to meet all of the dogs in training soon.
Well, I need to go. The girls can't wait any longer! We hope you have a wonderful week. Thanks for checking on us! Please keep all of the families out there who have sick children in your prayers. This time of year is especially hard for kids to be in the hospital.
Saturday, December 1, 2007
Wow, it's December already! Where has the year gone?! So, each week I truly plan on putting an update on our site, and the next thing I know a few weeks have gone by with no word from us. I want to apologize to those of you who faithfully check up on us. It would actually be much easier on me if I did update more often, as I wouldn't have as much to write! I'll keep working on it.
We had a magnificent Thanksgiving this year. We have so very much to be thankful for, and it's nice to have a day just to give thanks. We are absolutely blessed to have our four amazing children in our lives, as well as each other. We were lucky to have our nephew Jon join us for the day. He is in the Air Force, and we are so proud of him for all that he does. We are also so very thankful to the many people who keep us in your thoughts and prayers and continue to check in on our family. Your support means the world to us!
Taylor just finished up her swimming lessons. She did a fantastic job, and she passed into a new level. She was a dolphin, and now she will be a shark. I can't even begin to tell you how excited she is! Erin and Jade love to watch her in her lessons. They would go down to the end of the pool where Taylor was with her teacher, and they would closely observe the entire lesson. Jade often looked like a swim coach standing there. Erin just liked to wheel around on the pool deck, because it was a nice smooth, flat surface.
K.J. is doing well in school. He is in many AP and Honors classes, so he often has a lot of work to do. I know some of you may wonder why we don't write about him much on our site, but he's a teenager. For those of you who have or know or are teenagers, "nuff said". The girls adore him, and they can't wait to see him on the weekends. They count the days until he will be with us once again.
I want to apologize for the video of Erin in the powerchair not working. I'm not sure why that is, but I will keep trying. I think that the other times I uploaded videos to the site it took a few days for them to work, but I think we're beyond that timeframe. I will write to Freewebs to find out what I can do to get it to work.
We want to say a very special thank you to Terri and Madi for the wonderful day we spent with them at Funland today. You gave our family a fantastic, much needed treat, and we could never thank you enough for that. For those of you who don't know what a Funland is, it is like Chuck E. Cheese, but bigger. They have a gigantic play structure, which is the very first thing Taylor and Jade wanted to play on. Erin took one look at it and panicked. I breathed a huge sigh of relief, as I am completely claustrophobic and wasn't looking forward to taking her up through the tunnels and other small, enclosed spaces. However, later in the day she decided that she wanted to try it, and away we went. Erin was so very proud of herself for not being afraid, and I was proud of myself for not having a panic attack! :0) Kevin and K.J. were able to have some father/son bonding time playing basketball and other video games. We also took the girls on a merry-go-round, which Erin was previously afraid of. This time, after going around once, she was in love with it. It's so much fun to see how much they have all grown up in the last year. We love watching them interact and play!
We want to say Happy Birthday to some wonderful people in our lives. Jean Jean (Kevin's mother), my SIL Grace, and my dad have all celebrated birthdays in the past week. Happy birthday to all of you! We love you dearly and wouldn't be where we are today without your love and support.
I will upload some new pictures tonight, so check them out when you have a chance. Have a wonderful week, and enjoy the magic of the season!
We had a magnificent Thanksgiving this year. We have so very much to be thankful for, and it's nice to have a day just to give thanks. We are absolutely blessed to have our four amazing children in our lives, as well as each other. We were lucky to have our nephew Jon join us for the day. He is in the Air Force, and we are so proud of him for all that he does. We are also so very thankful to the many people who keep us in your thoughts and prayers and continue to check in on our family. Your support means the world to us!
Taylor just finished up her swimming lessons. She did a fantastic job, and she passed into a new level. She was a dolphin, and now she will be a shark. I can't even begin to tell you how excited she is! Erin and Jade love to watch her in her lessons. They would go down to the end of the pool where Taylor was with her teacher, and they would closely observe the entire lesson. Jade often looked like a swim coach standing there. Erin just liked to wheel around on the pool deck, because it was a nice smooth, flat surface.
K.J. is doing well in school. He is in many AP and Honors classes, so he often has a lot of work to do. I know some of you may wonder why we don't write about him much on our site, but he's a teenager. For those of you who have or know or are teenagers, "nuff said". The girls adore him, and they can't wait to see him on the weekends. They count the days until he will be with us once again.
I want to apologize for the video of Erin in the powerchair not working. I'm not sure why that is, but I will keep trying. I think that the other times I uploaded videos to the site it took a few days for them to work, but I think we're beyond that timeframe. I will write to Freewebs to find out what I can do to get it to work.
We want to say a very special thank you to Terri and Madi for the wonderful day we spent with them at Funland today. You gave our family a fantastic, much needed treat, and we could never thank you enough for that. For those of you who don't know what a Funland is, it is like Chuck E. Cheese, but bigger. They have a gigantic play structure, which is the very first thing Taylor and Jade wanted to play on. Erin took one look at it and panicked. I breathed a huge sigh of relief, as I am completely claustrophobic and wasn't looking forward to taking her up through the tunnels and other small, enclosed spaces. However, later in the day she decided that she wanted to try it, and away we went. Erin was so very proud of herself for not being afraid, and I was proud of myself for not having a panic attack! :0) Kevin and K.J. were able to have some father/son bonding time playing basketball and other video games. We also took the girls on a merry-go-round, which Erin was previously afraid of. This time, after going around once, she was in love with it. It's so much fun to see how much they have all grown up in the last year. We love watching them interact and play!
We want to say Happy Birthday to some wonderful people in our lives. Jean Jean (Kevin's mother), my SIL Grace, and my dad have all celebrated birthdays in the past week. Happy birthday to all of you! We love you dearly and wouldn't be where we are today without your love and support.
I will upload some new pictures tonight, so check them out when you have a chance. Have a wonderful week, and enjoy the magic of the season!
Monday, November 19, 2007
Yet another busy week last week. We literally had somewhere to go each and every day. On Monday Taylor had swimming lessons, and then Erin and Jade had a developmental screening with the school district. We needed to have that done in order to see what services are available to Erin within our county. They both scored very high on everything, except Erin obviously scored quite low on the self-help portion. She is not able to dress/undress herself yet, wash her own hands, reach to get objects, go to the bathroom, etc. This wasn't alarming to us, because we knew it was the case. We, along with Becca at KKI, are working with her to teach her what she is physically able to do. We have another meeting next week to decide what services Erin is eligible for.
On Tuesday we went up to Baltimore to try out a new set of wheels for Erin's wheelchair. They are called "E-Motion Wheels", and they assist in propulsion when a person pushes. Unfortunately the wheels were set up on an adult chair, so Erin wasn't able to reach both wheels at the same time. I think she became a bit frustrated. The best part of the day was that we went up early for a girls-only lunch with some of our wonderful friends and outstanding therapists. It was so much fun!! It had a Hannah Montana theme (Taylor asked if Hannah Montana was going to be there). Too cute!! Anyway, the girls were excited to see their friends Grace and Tara Meek, and they met some new friends as well. While Erin was trying out the wheels after lunch, Taylor and Jade "helped" Grace with her therapy by playing with her. After finding that the E-Motion wheels weren't working out, Miss Becca asked Grace if Erin could try her power chair. Grace said yes, so we put Erin in her chair. Kim (Grace's mom) turned the chair on, and Erin literally took off. She seemed to know exactly what to do and how to maneuver. Wow! We could not believe our eyes. She rode around the gym giving everyone high-fives, and then we went out in the hall for some new adventures. I took some pictures and video that I will try to upload soon. When we went back into the gym, Erin pulled up right in front of Grace and turned the chair off by herself without being told how to do it. She is amazingly observant! Thank you Grace for allowing Erin to try your chair! We had a great day, and the ride home wasn't too bad either. We picked up Kevin from work and enjoyed his company all the way home.
On Wednesday Taylor had swimming lessons again, and then we had some errands to run. That evening we had a few members of a local church over to our house. They think they may be able to help us with at least one of the modifications on our home. Just the fact that they would like to help us is amazing to us! We'll let you know when we hear anything. We also want to thank Skip for his unbelievable act of kindness he bestowed upon us on Thursday. You left me in tears of joy, and we are humbled by your generosity.
On Thursday we went to Children's Hospital for their ribbon-cutting ceremony to open their brand-new patient tower. The girls were all involved in the ceremony; they each received a hard-hat and a pair of scissors, and they cut ribbons in front of the doors of new patient rooms in the beautiful, state-of-the-art building. It was such an honor to be a part of such a special day. We hope we NEVER have to stay in any of the rooms, but if we do, they are outstanding. We were able to pick up Kevin again from work, which was another treat for us.
On Friday Taylor had her 6 year well-child check-up. She is doing well over-all. Her Dr. measured her legs to keep track of their growth. There is a noticeable difference between her legs from the knee down. We also got our flu shots that day as well. Taylor actually had to get two shots, because she needed a chicken pox booster. The only one to cry when she received her shot was... Erin! Kevin had to take Erin and Jade to a different location in the hospital to receive their shots, and he said Erin started crying when she saw another little girl crying. When I asked her, she said that the shot hurt her leg. Hmmmmmm.... Well, we'll see. That would be another situation where we would be happy that she felt pain. I know it sounds strange to say that, but if she feels anything in her legs we rejoice.
On Saturday we went to the World Disability Expo at the Washington Convention Center. Erin was most interested in the wheelchair sports, but there weren't any reps there from kids' teams. They did have a power soccer tournament going on, which Erin would have watched all day. There were a few booths that had some great information, and we met many wonderful people. We were excited to meet the people from the Christopher and Dana Reeve Foundation. We hope to become involved in some of the wonderful things they are doing for people with disabilities.
Sunday we spent the day cleaning and Kevin was painting. The girls had a day off, but we sure didn't. Oh well, it needed to be done. I didn't even sit down at the computer all weekend, but I kept planning on posting an update. Well, I finally got to it this evening, although I'm sure there is much more I could say. I just gave you a quick run-down of our week.
I will do my best to update again before Thanksgiving, but if I don't have the opportunity, we hope everyone has a wonderful and safe holiday. We hope you are all able to spend the day with family and enjoy the company of those you love. Our nephew Jon, who is in the Air Force, is coming to spend the weekend with us. It will be exciting to see him again. We have so much to be thankful for, and we will spend this holiday once again giving thanks for each and every one of those things, especially our children.
On Tuesday we went up to Baltimore to try out a new set of wheels for Erin's wheelchair. They are called "E-Motion Wheels", and they assist in propulsion when a person pushes. Unfortunately the wheels were set up on an adult chair, so Erin wasn't able to reach both wheels at the same time. I think she became a bit frustrated. The best part of the day was that we went up early for a girls-only lunch with some of our wonderful friends and outstanding therapists. It was so much fun!! It had a Hannah Montana theme (Taylor asked if Hannah Montana was going to be there). Too cute!! Anyway, the girls were excited to see their friends Grace and Tara Meek, and they met some new friends as well. While Erin was trying out the wheels after lunch, Taylor and Jade "helped" Grace with her therapy by playing with her. After finding that the E-Motion wheels weren't working out, Miss Becca asked Grace if Erin could try her power chair. Grace said yes, so we put Erin in her chair. Kim (Grace's mom) turned the chair on, and Erin literally took off. She seemed to know exactly what to do and how to maneuver. Wow! We could not believe our eyes. She rode around the gym giving everyone high-fives, and then we went out in the hall for some new adventures. I took some pictures and video that I will try to upload soon. When we went back into the gym, Erin pulled up right in front of Grace and turned the chair off by herself without being told how to do it. She is amazingly observant! Thank you Grace for allowing Erin to try your chair! We had a great day, and the ride home wasn't too bad either. We picked up Kevin from work and enjoyed his company all the way home.
On Wednesday Taylor had swimming lessons again, and then we had some errands to run. That evening we had a few members of a local church over to our house. They think they may be able to help us with at least one of the modifications on our home. Just the fact that they would like to help us is amazing to us! We'll let you know when we hear anything. We also want to thank Skip for his unbelievable act of kindness he bestowed upon us on Thursday. You left me in tears of joy, and we are humbled by your generosity.
On Thursday we went to Children's Hospital for their ribbon-cutting ceremony to open their brand-new patient tower. The girls were all involved in the ceremony; they each received a hard-hat and a pair of scissors, and they cut ribbons in front of the doors of new patient rooms in the beautiful, state-of-the-art building. It was such an honor to be a part of such a special day. We hope we NEVER have to stay in any of the rooms, but if we do, they are outstanding. We were able to pick up Kevin again from work, which was another treat for us.
On Friday Taylor had her 6 year well-child check-up. She is doing well over-all. Her Dr. measured her legs to keep track of their growth. There is a noticeable difference between her legs from the knee down. We also got our flu shots that day as well. Taylor actually had to get two shots, because she needed a chicken pox booster. The only one to cry when she received her shot was... Erin! Kevin had to take Erin and Jade to a different location in the hospital to receive their shots, and he said Erin started crying when she saw another little girl crying. When I asked her, she said that the shot hurt her leg. Hmmmmmm.... Well, we'll see. That would be another situation where we would be happy that she felt pain. I know it sounds strange to say that, but if she feels anything in her legs we rejoice.
On Saturday we went to the World Disability Expo at the Washington Convention Center. Erin was most interested in the wheelchair sports, but there weren't any reps there from kids' teams. They did have a power soccer tournament going on, which Erin would have watched all day. There were a few booths that had some great information, and we met many wonderful people. We were excited to meet the people from the Christopher and Dana Reeve Foundation. We hope to become involved in some of the wonderful things they are doing for people with disabilities.
Sunday we spent the day cleaning and Kevin was painting. The girls had a day off, but we sure didn't. Oh well, it needed to be done. I didn't even sit down at the computer all weekend, but I kept planning on posting an update. Well, I finally got to it this evening, although I'm sure there is much more I could say. I just gave you a quick run-down of our week.
I will do my best to update again before Thanksgiving, but if I don't have the opportunity, we hope everyone has a wonderful and safe holiday. We hope you are all able to spend the day with family and enjoy the company of those you love. Our nephew Jon, who is in the Air Force, is coming to spend the weekend with us. It will be exciting to see him again. We have so much to be thankful for, and we will spend this holiday once again giving thanks for each and every one of those things, especially our children.
Tuesday, November 6, 2007
Well, so much for getting pictures up on the site last week! Sorry! There are days when I literally don't even sit down at the computer, and I'm not quite sure how I used to do it. Anyway, I will do my best to get some pictures up this afternoon.
The girls had a fantastic Halloween. They were so excited to get dressed up in their costumes. They wanted to help answer the door to hand out candy, and then they couldn't wait to go out Trick or Treating themselves. They had a great time -- the weather was perfect. They all just kept saying, "this is the best Halloween EVER!!" The next morning, Jade asked when we could go Trick or Treating again. Too cute!
We've been keeping extremely busy with homeschooling and physical therapy. There are so many days when I just can't get it all in, and I feel terrible. It is all so very important, and I hate to miss something. We have many appointments in the upcoming weeks, so our schedule is going to be really crazy.
We had a wonderful weekend. Kevin had a performance in Annapolis, so we all went to watch the show. It was pretty windy/chilly, but we had a lot of fun. It's definitely interesting trying to find places to catheterize the girls when we are out and about. We have to cath them every 3 hours. We can be early in cathing but never late. Whew! Thank goodness Kevin was able to hang out with us for most of the time, so it made things much easier.
Many, many thanks to the people who have recently donated to our fund. Karianne, Emily, Brenda, Sarah, Lindsay, you are all angels in our eyes, and you will be in our hearts forever! We may never have the opportunity to meet you, but you have touched our lives in a profound way, and you are helping to make things better for our children! For that we are eternally grateful!
Because of the donation of someone wonderful, Taylor has the opportunity to take swimming lessons right now. She is wildly excited about being able to get back in the pool, and she is now in the Dolphins class. Go Taylor!! Jade has decided that she would like to be able to swim without a lifejacket and go underwater like her big sister. We'll see. She is often all talk when it comes to things like that. However, we will surely try! I think what she and Erin would really love to do is be in a dance class. They are always dancing around our house and singing. Erin dances in her wheelchair and dynamic stander. We've also talked to her about playing on a wheelchair basketball team, but there aren't any in our area, so we will have to see what we can do about that.
Oh, for those of you who are interested, the special about the girls is showing again tonight on Discovery Health Channel here in the U.S. It will be on at 8 and 11 p.m. East Coast time. It is called, "Conjoined Twins: Erin and Jade". It hasn't been updated since last year, but our family still loves to watch it every time it is on.
We hope you have a terrific week. Take care!
The girls had a fantastic Halloween. They were so excited to get dressed up in their costumes. They wanted to help answer the door to hand out candy, and then they couldn't wait to go out Trick or Treating themselves. They had a great time -- the weather was perfect. They all just kept saying, "this is the best Halloween EVER!!" The next morning, Jade asked when we could go Trick or Treating again. Too cute!
We've been keeping extremely busy with homeschooling and physical therapy. There are so many days when I just can't get it all in, and I feel terrible. It is all so very important, and I hate to miss something. We have many appointments in the upcoming weeks, so our schedule is going to be really crazy.
We had a wonderful weekend. Kevin had a performance in Annapolis, so we all went to watch the show. It was pretty windy/chilly, but we had a lot of fun. It's definitely interesting trying to find places to catheterize the girls when we are out and about. We have to cath them every 3 hours. We can be early in cathing but never late. Whew! Thank goodness Kevin was able to hang out with us for most of the time, so it made things much easier.
Many, many thanks to the people who have recently donated to our fund. Karianne, Emily, Brenda, Sarah, Lindsay, you are all angels in our eyes, and you will be in our hearts forever! We may never have the opportunity to meet you, but you have touched our lives in a profound way, and you are helping to make things better for our children! For that we are eternally grateful!
Because of the donation of someone wonderful, Taylor has the opportunity to take swimming lessons right now. She is wildly excited about being able to get back in the pool, and she is now in the Dolphins class. Go Taylor!! Jade has decided that she would like to be able to swim without a lifejacket and go underwater like her big sister. We'll see. She is often all talk when it comes to things like that. However, we will surely try! I think what she and Erin would really love to do is be in a dance class. They are always dancing around our house and singing. Erin dances in her wheelchair and dynamic stander. We've also talked to her about playing on a wheelchair basketball team, but there aren't any in our area, so we will have to see what we can do about that.
Oh, for those of you who are interested, the special about the girls is showing again tonight on Discovery Health Channel here in the U.S. It will be on at 8 and 11 p.m. East Coast time. It is called, "Conjoined Twins: Erin and Jade". It hasn't been updated since last year, but our family still loves to watch it every time it is on.
We hope you have a terrific week. Take care!
Wednesday, October 31, 2007
Happy Halloween!!!
We want to take this time to tell you about our very special day yesterday. Our beautiful Taylor Joy celebrated her 6th birthday! It's so difficult to believe that she is already 6 years old -- she is growing up so fast!! Taylor was bubbling with excitement for her birthday, because we told her that she was Queen for the Day. We ended up having to spend the day at Children's Hospital again, but that didn't seem to phase her. Taylor truly is our Joy. She has handled everything on this journey with bravery, grace and poise. It is very rare that she does not have a smile on her face. We could not be more proud of her, and we love her with all of our hearts! Happy Birthday, Sweet Girl!!
We went to Children's yesterday for a follow-up visit with Taylor's neurosurgeon. He wanted to see how she is doing now and go over her MRI results with us. We could tell she was a little bit nervous when we went into Dr. Keating's office, because she still has that fear that she will need another surgery right away. However, being the brave girl that she is, she pushed that fear down and marched into his office with a smile. While he was examining her, Kevin and I had to cover her eyes when he was checking for sensation in her leg and foot. Taylor is a "people pleaser", and she doesn't want to disappoint anyone. She will say what she thinks is the "right answer" or the answer that people are hoping for, because she doesn't want to make anyone sad. Anyway, what Dr. Keating found was that most of the sensation is back in her lower right leg, but it is still not there in her foot. She does tell me that her foot tingles sometimes, so that could be her nerves beginning to fire. We hope and pray that's the case. When we looked at her MRI, we saw that much of the swelling around her spinal cord is now gone. Her cord looks more relaxed, and does not look like it is being pulled tight. She still has the sarynx, which is a fluid-filled sac in the middle of her spinal cord. During the surgery, Dr. Keating decided that it wasn't big enough for him to try to drain. Sometimes they disappear after a tethered-cord release, but Taylor's never has. He seemed concerned that all of her function still hasn't returned, but he said that, especially with the bowel and bladder, it could take from 6 months to a year to come back (if it does). Bowel and bladder function are the first to go and the last to return (go figure). Taylor's walking has improved, although it takes constant reminding from us for her to keep her foot straight, and she has to concentrate on making sure she picks it up high enough so that it doesn't drag. She does not fall down nearly as often. She is doing far better than she was just a month ago, and we are exceedingly proud of her for working so hard. We are worried that she will need another surgery someday, but for now, we will just celebrate that she continues to recover from this one. Dr. Keating stressed to us that he wants to see her every 3 months, and he will get new MRI's every 6 months. We watch her each and every day for any backsliding with her function. We pray that day never comes. There is a chance that she will never need another surgery, but unfortunately, there is also a big chance that she will. We take each day as it comes, and we try not to take anything with our children for granted. Every day we have with them is a gift!
The girls are all extremely excited for Halloween. We carved our pumpkin last night, and it turned out very cute. I will try to post pictures tomorrow. Taylor will be going as a snow princess this year. Erin is going to be a bunny and Jade is Supergirl. They are all absolutely adorable in their costumes, so I can't wait to share new pics. They never really care about the candy so much, they just love to get dressed up and walk up and down our block. Erin always has a difficult time, because she can never roll right up to the door (most houses in our area have front steps). We have to take her out of her chair and bring her up to the door. I think that takes some of the fun out of it for her, but she tries to never show it. No matter what, we always have a great time! The weather should be perfect, with just a little chill in the air.
We received two more donations, and we want to thank those very special people for contributing to our home modification fund! I wish I could send you thank you cards, but I don't have addresses to send them to, so hopefully this thank you will suffice. We can't even begin to express just how much it means to us that people would do something so monumental for our family. To us, even $5 is huge, because we know and understand all too well that most people are on a budget, and giving up any amount of money for something unexpected can be a huge hardship. Thank you again to Patrice, Catherine and Steffi! It means the world to us!
We hope everyone has a wonderful day! Please stay safe, and have fun!
We want to take this time to tell you about our very special day yesterday. Our beautiful Taylor Joy celebrated her 6th birthday! It's so difficult to believe that she is already 6 years old -- she is growing up so fast!! Taylor was bubbling with excitement for her birthday, because we told her that she was Queen for the Day. We ended up having to spend the day at Children's Hospital again, but that didn't seem to phase her. Taylor truly is our Joy. She has handled everything on this journey with bravery, grace and poise. It is very rare that she does not have a smile on her face. We could not be more proud of her, and we love her with all of our hearts! Happy Birthday, Sweet Girl!!
We went to Children's yesterday for a follow-up visit with Taylor's neurosurgeon. He wanted to see how she is doing now and go over her MRI results with us. We could tell she was a little bit nervous when we went into Dr. Keating's office, because she still has that fear that she will need another surgery right away. However, being the brave girl that she is, she pushed that fear down and marched into his office with a smile. While he was examining her, Kevin and I had to cover her eyes when he was checking for sensation in her leg and foot. Taylor is a "people pleaser", and she doesn't want to disappoint anyone. She will say what she thinks is the "right answer" or the answer that people are hoping for, because she doesn't want to make anyone sad. Anyway, what Dr. Keating found was that most of the sensation is back in her lower right leg, but it is still not there in her foot. She does tell me that her foot tingles sometimes, so that could be her nerves beginning to fire. We hope and pray that's the case. When we looked at her MRI, we saw that much of the swelling around her spinal cord is now gone. Her cord looks more relaxed, and does not look like it is being pulled tight. She still has the sarynx, which is a fluid-filled sac in the middle of her spinal cord. During the surgery, Dr. Keating decided that it wasn't big enough for him to try to drain. Sometimes they disappear after a tethered-cord release, but Taylor's never has. He seemed concerned that all of her function still hasn't returned, but he said that, especially with the bowel and bladder, it could take from 6 months to a year to come back (if it does). Bowel and bladder function are the first to go and the last to return (go figure). Taylor's walking has improved, although it takes constant reminding from us for her to keep her foot straight, and she has to concentrate on making sure she picks it up high enough so that it doesn't drag. She does not fall down nearly as often. She is doing far better than she was just a month ago, and we are exceedingly proud of her for working so hard. We are worried that she will need another surgery someday, but for now, we will just celebrate that she continues to recover from this one. Dr. Keating stressed to us that he wants to see her every 3 months, and he will get new MRI's every 6 months. We watch her each and every day for any backsliding with her function. We pray that day never comes. There is a chance that she will never need another surgery, but unfortunately, there is also a big chance that she will. We take each day as it comes, and we try not to take anything with our children for granted. Every day we have with them is a gift!
The girls are all extremely excited for Halloween. We carved our pumpkin last night, and it turned out very cute. I will try to post pictures tomorrow. Taylor will be going as a snow princess this year. Erin is going to be a bunny and Jade is Supergirl. They are all absolutely adorable in their costumes, so I can't wait to share new pics. They never really care about the candy so much, they just love to get dressed up and walk up and down our block. Erin always has a difficult time, because she can never roll right up to the door (most houses in our area have front steps). We have to take her out of her chair and bring her up to the door. I think that takes some of the fun out of it for her, but she tries to never show it. No matter what, we always have a great time! The weather should be perfect, with just a little chill in the air.
We received two more donations, and we want to thank those very special people for contributing to our home modification fund! I wish I could send you thank you cards, but I don't have addresses to send them to, so hopefully this thank you will suffice. We can't even begin to express just how much it means to us that people would do something so monumental for our family. To us, even $5 is huge, because we know and understand all too well that most people are on a budget, and giving up any amount of money for something unexpected can be a huge hardship. Thank you again to Patrice, Catherine and Steffi! It means the world to us!
We hope everyone has a wonderful day! Please stay safe, and have fun!
Tuesday, October 23, 2007
Well, on a much lighter note.... 
We just wanted to thank everyone for all of the wonderful posts in our guestbook and uplifting e-mails we received after our last update. We want to apologize, since we usually try to let comments like that roll off our backs, but we just couldn't let that one go. The response was overwhelming and encouraging beyond belief. We can't even begin to tell you how much we appreciate all of the amazing people who read our site and keep our family in their thoughts and prayers. It is truly humbling! Thank you again!
There is an article about Erin in the November issue of the Washingtonian magazine. It is called "Miracle Girl". We want to thank the writer, Cindy Rich, for doing such a fantastic job! This is the second article she has written about our family, and we are so thankful for how well she listens and notices the little things. Through all of this, she has become a good friend, which is another blessing in itself. Thank you Cindy! Tell me when you're ready to help us write our book!
We spent the day at Children's Hospital yesterday. Taylor had an MRI to see how things look with her spinal cord. We will get the results sometime next week. As I was sitting there waiting for her to be finished, one of the nurses came out to say that they wanted to use the contrast. This helps them to see things more clearly sometimes. It scared me for a second, only because I thought she should have been done by then. Anyway, she came out of the sedation just fine, with a smile on her face. She was starving, because she hadn't eaten anything since 8 p.m. the night before, so we went to the cafeteria for lunch. The girls love to eat there for some reason. Probably because it is so busy, and there are so many people to see. Everyone did extremely well the entire day, and they were all such big girls. We want to once again thank Grandma Terry, Miss Nadia, and Miss Katie in the Volunteer Services Office for taking care of Erin and Jade while I was with Taylor during her induction. We always want to be right there when they put our girls under sedation, and you ladies make it possible. We love you all!
We're all doing well today. We're back to homeschooling, so I must be going. We hope you have a wonderful day and a fantastic week! Thanks for checking in!
We just wanted to thank everyone for all of the wonderful posts in our guestbook and uplifting e-mails we received after our last update. We want to apologize, since we usually try to let comments like that roll off our backs, but we just couldn't let that one go. The response was overwhelming and encouraging beyond belief. We can't even begin to tell you how much we appreciate all of the amazing people who read our site and keep our family in their thoughts and prayers. It is truly humbling! Thank you again! There is an article about Erin in the November issue of the Washingtonian magazine. It is called "Miracle Girl". We want to thank the writer, Cindy Rich, for doing such a fantastic job! This is the second article she has written about our family, and we are so thankful for how well she listens and notices the little things. Through all of this, she has become a good friend, which is another blessing in itself. Thank you Cindy! Tell me when you're ready to help us write our book!
We spent the day at Children's Hospital yesterday. Taylor had an MRI to see how things look with her spinal cord. We will get the results sometime next week. As I was sitting there waiting for her to be finished, one of the nurses came out to say that they wanted to use the contrast. This helps them to see things more clearly sometimes. It scared me for a second, only because I thought she should have been done by then. Anyway, she came out of the sedation just fine, with a smile on her face. She was starving, because she hadn't eaten anything since 8 p.m. the night before, so we went to the cafeteria for lunch. The girls love to eat there for some reason. Probably because it is so busy, and there are so many people to see. Everyone did extremely well the entire day, and they were all such big girls. We want to once again thank Grandma Terry, Miss Nadia, and Miss Katie in the Volunteer Services Office for taking care of Erin and Jade while I was with Taylor during her induction. We always want to be right there when they put our girls under sedation, and you ladies make it possible. We love you all!
We're all doing well today. We're back to homeschooling, so I must be going. We hope you have a wonderful day and a fantastic week! Thanks for checking in!
Sunday, October 21, 2007
We usually try to refrain from responding to posts on our guestbook, but today will have to be an exception. Kevin and I were completely taken aback by Shaylen’s post. We wonder if she has read more than one or two of our updates? Shaylen, do you understand that we are friends with most of the other families that you have heard about (and many more that you haven’t) with conjoined or formerly conjoined twins? Do you realize that we are thankful each and every day just to have our children in our lives? Do you know that most conjoined twins do not even survive to birth, and like every other family expecting conjoined twins, we feared for Erin and Jade’s lives on a daily basis until after they were separated? We understand how many other families don’t have their children at all, and we think about that daily. Our children release balloons every year for all of the conjoined babies up in Heaven. We talk about how lucky and blessed we are. What kind of perspective do you have?
We NEVER talk to Erin about what she CAN’T do. We are constantly pushing her to work hard in order to achieve all that she is capable of. We are well aware of the thousands of children out there who are much worse off than her, but there are also millions of children out there who are far better off than Erin. However, we do not need to compare apples and oranges. Everyone has something that they have to deal with in their lives, and to that person or that family it is serious and affects how they live each day.
We did not create this site to compare our children to other conjoined or formerly conjoined twins. Each set of conjoined twins, whether they are able to be separated or not, have issues and hardships they have to endure. Because of the nature of conjoined twins, it would be amazing if there weren’t long-term problems of some kind. We run a different site just for families of conjoined twins, which is where we hear about all of the issues that most people do not. We created THIS site to keep our family and friends informed about what we go through in our lives. We don’t put it out there for others to criticize, although we surely get enough of that. And we surely don’t write about ALL of the issues we deal with or the hardships that they create. We, like all families of conjoined twins, still want some privacy. Maybe you are one of the people under the false impression that we received money for some or all of the media attention given to our girls. Just to set the record straight, we did not EVER receive any money for anything. Each time our show airs on Discovery Health, we do not receive even one penny.
I’m not quite sure why you think it is important to compare us to the Herrin family. Each and every set of conjoined twins is completely different. Kendra and Maliyah will have lifelong issues, just like our girls, and just like every other set that survives. We are so thankful that their surgery was a success and that Maliyah’s kidney transplant went so well. We are in awe of Erin Herrin and respect her more than words can say for giving up one of her kidneys for her daughter. We hope that both girls will have the opportunity to use prosthetic legs in order to walk better in the future. They are strong little girls who have beaten all odds put in front of them. They, like Erin and Jade, are truly blessed to be alive today.
Another reason we know we are blessed is that our Erin not only survived the separation surgery, but she survived a stroke as well. The fact that she just has a spinal cord injury is a miracle in itself. Of course, most people do not know what it means to have a spinal cord injury. It does NOT mean that your legs just don’t work. Depending on the level of the injury, there are many other issues involved. For Erin, because her injury is from T3-T7, that means everything below the level of her armpits is affected. If she gets a cold, it could very well turn into pneumonia quite easily and we would end up spending time in the hospital yet again. Her cough is not strong enough to clear her lungs, and she is in danger of choking much more easily than most of us. She can’t control her body temperature, as that is a function of the spinal cord, so she is constantly hot/sweaty. Her bowel and bladder are affected to the point where we now have to catheterize her every 3-4 hours (along with Taylor), and she has a bowel program that we follow every night to make sure she can have a bowel movement each day. Most people don’t think about that. Erin is always in danger of skin breakdown on her back, bottom and legs. She has decreased circulation below the level of the injury, and her skin does not heal very quickly. As she gets older, she will be susceptible to pressure sores on her bottom from sitting in her wheelchair for hours on end and possibly forgetting she needs to shift her weight from time to time.
These are just a few of the issues we deal with daily. We don’t give you a play by play of everything that happens in our lives. We didn’t even touch on all of Taylor’s issues. We didn’t mention the thousands and thousands of miles we drive each year for doctors and physical therapy appointments. Imagine stopping everything you are doing every 3 hours, trying to find a quiet, private, clean area, in order to catheterize two of your children. Set a watch sometime to see what it would be like. Our children have gone through 4 major surgeries in the past 4 years, and they have been under anesthesia many more times than that. And yet, we would not think of complaining. We are thankful for everything we deal with, because our children are alive. Our hearts go out to every family who has lost a child or children, whether they were conjoined or not. That pain is something we wish no one had to endure.
We’re sorry that some of you believe we don’t understand just how lucky and blessed we are. However, until you know exactly what we are going through and every issue we deal with, please try to refrain from judging us. We understand that this is a public site, and people are allowed to post whatever they want, but at some point in the future we want to sit our girls down and have them read the mostly positive comments by the many wonderful people who continue to keep our family in their thoughts and prayers. You get an extremely small glimpse of our lives through this site; very few people know the stresses and hardships we face. We don’t write things on our website to get pats on the back or to have people running to our rescue. The reason we run this website, which is the same reason we ever agreed to any media attention at all, is to attempt to help other families who may be experiencing similar issues and to keep the many caring people from around the world, who have adopted us into their own families, up to date on what is happening with our children.
For anyone who has problems with us or what we write on our site, please feel free to e-mail us directly. We would be more than happy to discuss any items about our children’s health and well-being that would be helpful to them. It’s pretty disheartening to put the amount of time into this site that we do, usually in the middle of the night, just to have people post comments that question the very essence of our family.
To the many, many people who do post positive, uplifting messages, thank you from the bottom of our hearts. Thank you to everyone who keeps our children in your thoughts and prayers. We appreciate everyone who has helped us on our journey.
We NEVER talk to Erin about what she CAN’T do. We are constantly pushing her to work hard in order to achieve all that she is capable of. We are well aware of the thousands of children out there who are much worse off than her, but there are also millions of children out there who are far better off than Erin. However, we do not need to compare apples and oranges. Everyone has something that they have to deal with in their lives, and to that person or that family it is serious and affects how they live each day.
We did not create this site to compare our children to other conjoined or formerly conjoined twins. Each set of conjoined twins, whether they are able to be separated or not, have issues and hardships they have to endure. Because of the nature of conjoined twins, it would be amazing if there weren’t long-term problems of some kind. We run a different site just for families of conjoined twins, which is where we hear about all of the issues that most people do not. We created THIS site to keep our family and friends informed about what we go through in our lives. We don’t put it out there for others to criticize, although we surely get enough of that. And we surely don’t write about ALL of the issues we deal with or the hardships that they create. We, like all families of conjoined twins, still want some privacy. Maybe you are one of the people under the false impression that we received money for some or all of the media attention given to our girls. Just to set the record straight, we did not EVER receive any money for anything. Each time our show airs on Discovery Health, we do not receive even one penny.
I’m not quite sure why you think it is important to compare us to the Herrin family. Each and every set of conjoined twins is completely different. Kendra and Maliyah will have lifelong issues, just like our girls, and just like every other set that survives. We are so thankful that their surgery was a success and that Maliyah’s kidney transplant went so well. We are in awe of Erin Herrin and respect her more than words can say for giving up one of her kidneys for her daughter. We hope that both girls will have the opportunity to use prosthetic legs in order to walk better in the future. They are strong little girls who have beaten all odds put in front of them. They, like Erin and Jade, are truly blessed to be alive today.
Another reason we know we are blessed is that our Erin not only survived the separation surgery, but she survived a stroke as well. The fact that she just has a spinal cord injury is a miracle in itself. Of course, most people do not know what it means to have a spinal cord injury. It does NOT mean that your legs just don’t work. Depending on the level of the injury, there are many other issues involved. For Erin, because her injury is from T3-T7, that means everything below the level of her armpits is affected. If she gets a cold, it could very well turn into pneumonia quite easily and we would end up spending time in the hospital yet again. Her cough is not strong enough to clear her lungs, and she is in danger of choking much more easily than most of us. She can’t control her body temperature, as that is a function of the spinal cord, so she is constantly hot/sweaty. Her bowel and bladder are affected to the point where we now have to catheterize her every 3-4 hours (along with Taylor), and she has a bowel program that we follow every night to make sure she can have a bowel movement each day. Most people don’t think about that. Erin is always in danger of skin breakdown on her back, bottom and legs. She has decreased circulation below the level of the injury, and her skin does not heal very quickly. As she gets older, she will be susceptible to pressure sores on her bottom from sitting in her wheelchair for hours on end and possibly forgetting she needs to shift her weight from time to time.
These are just a few of the issues we deal with daily. We don’t give you a play by play of everything that happens in our lives. We didn’t even touch on all of Taylor’s issues. We didn’t mention the thousands and thousands of miles we drive each year for doctors and physical therapy appointments. Imagine stopping everything you are doing every 3 hours, trying to find a quiet, private, clean area, in order to catheterize two of your children. Set a watch sometime to see what it would be like. Our children have gone through 4 major surgeries in the past 4 years, and they have been under anesthesia many more times than that. And yet, we would not think of complaining. We are thankful for everything we deal with, because our children are alive. Our hearts go out to every family who has lost a child or children, whether they were conjoined or not. That pain is something we wish no one had to endure.
We’re sorry that some of you believe we don’t understand just how lucky and blessed we are. However, until you know exactly what we are going through and every issue we deal with, please try to refrain from judging us. We understand that this is a public site, and people are allowed to post whatever they want, but at some point in the future we want to sit our girls down and have them read the mostly positive comments by the many wonderful people who continue to keep our family in their thoughts and prayers. You get an extremely small glimpse of our lives through this site; very few people know the stresses and hardships we face. We don’t write things on our website to get pats on the back or to have people running to our rescue. The reason we run this website, which is the same reason we ever agreed to any media attention at all, is to attempt to help other families who may be experiencing similar issues and to keep the many caring people from around the world, who have adopted us into their own families, up to date on what is happening with our children.
For anyone who has problems with us or what we write on our site, please feel free to e-mail us directly. We would be more than happy to discuss any items about our children’s health and well-being that would be helpful to them. It’s pretty disheartening to put the amount of time into this site that we do, usually in the middle of the night, just to have people post comments that question the very essence of our family.
To the many, many people who do post positive, uplifting messages, thank you from the bottom of our hearts. Thank you to everyone who keeps our children in your thoughts and prayers. We appreciate everyone who has helped us on our journey.
Saturday, October 20, 2007
Many of you have been posting in our guestbook and e-mailing us about "Extreme Makeover: Home Edition", so we thought we should take the time to write about it. In order to do that, we will need to start at the beginning so you will know the full story. When we moved into this house, Kevin and I thought that we would have two incomes in order to pay the mortgage. After we found out about Erin's spinal cord injury, we knew there would be no way that I could return to work. With all of the physical therapy and doctors appointments that we go to in any given week, there is just no way I can get a job. We even considered one of us finding something for evenings and weekends, but with Kevin's travel schedule, that is not even remotely feasible either. We struggle each and every month just to pay the bills, so we knew that when it was time to modify our house for Erin, it was not a possibility for us. We do have a nice home, which we would sell in a heartbeat if we thought we could buy a big enough house, for less money, without having to move farther away from Washington D.C. As many of you know, the housing market is terrible for sellers right now, and we have had homes in our neighborhood up for sale for the last year. We already live too far away from Kevin's work and all of our appointments, and the thought of a longer commute is out of the question. We spend hours in the car as it is each day, and I can't imagine putting our girls, or Kevin, through that. Anyway, here is our dilemma. We need to modify our house for Erin. She has no way to be independent in the one place she should be. We have one very small area where she can roll in her wheelchair/dynamic stander, and the rest of the house is carpeted. Erin is not strong enough to push herself on the carpet, and she becomes extremely frustrated and upset. She can't keep up with her sisters when they are anywhere but the foyer (which is 98% of the time). Erin has to commando crawl to get around unless we are carrying her, which at 3 1/2 brings its own frustration. Our yard is even worse, as the backyard is a giant hill going up. She can't wheel herself in the grass, and she surely can't play on the hill. On Sunday of this week, we had the girls outside playing. When we came inside, Erin said to me, "Mommy, I don't want to play outside anymore." When I asked her why, she just repeated herself, saying she would stay inside with one of us instead. I asked her if it was because she couldn't move around on her own outside, and she said yes. It completely broke my heart, because all of the girls absolutely love playing outside. In fact, we probably don't bring them out as much as they would like, because we know how difficult it is for Erin. We have to carry her everywhere, and as everyone else runs from one activity to the next, Erin has no way to keep up. She is completely dependent on us to carry her, run with her, put her in the swings, put her by the sandbox, help her up and down the slide, carry her up and down the hill, etc. It's so heartbreaking to see her so upset about something she loves. It makes us feel completely helpless. Because of all of this, we have been working for the past two years trying to come up with a way that we can modify our home and our yard to make it accessible to Erin. We want her to have one place in the world where she can be absolutely comfortable and stress-free. She has so much to deal with on a daily basis, and she works so hard in the hopes that she will be able to walk someday. We want to be able to provide her with a home that she can be independent in. In January of 2007, we did send in our application to Extreme Makeover: Home Edition. We honestly did not think we would be chosen, because we do have a nice home, and there are so many out there with greater needs than ours. Of course, we did not hear from them at all, which was not a surprise. However, the reason we sent our application at all was because we wanted to be sure that we left no stone unturned. We wanted to be sure that we made EVERY effort to help Erin. Well, the Thursday before leaving for Baltimore, we did hear from the casting director for the show. After a great deal of effort on our part, we were given the news that our family was perfect for the show, but our house was not. For about a day, there was a great deal of excitement around here. We do understand their decision, though, and we know that the family they choose from this area will be the right one.
With all of that said, it still leaves us in our quest to modify the house we are in. We had someone trying to help us find groups or organizations that would be willing to help, but if they are out there, they are definitely not easy to find. My parents' church and the Fitterer family put together a benefit breakfast this past summer to help us raise money, and the donations from that are enough to put in two ramps. However, the modifications that would benefit Erin the most right now is everything inside the house, and we definitely don't have enough money to even start that project. It has taken us a very long time just to get to the point where we can bring ourselves to ask for help. We have always felt that we should do this on our own, but we now know it is not possible. So now we are asking for suggestions. If anyone out there knows of any groups or organizations that may be willing to help us, please let us know. On someone's suggestion, we did put a donations page up on our site, in case there is anyone out there who would like to make a donation to help Erin. We actually did receive a donation already, and we are forever grateful to this person. There are just no words to thank you for your gift. We didn't expect anything, so that makes it even more special!
We didn't put this here to beg for money. We have had many people asking about Extreme Makeover, and we wanted to tell you all about our situation. This is our reality. We did have a comment on our site about the "doom and gloom" that we write about, but we actually found that pretty amusing. We do often "sugarcoat" our entries, because we don't want to sound like we are wallowing in self-pity. We are so blessed to have our children with us, and very few know just what we have been through. To protect our safety, very few know how often Kevin travels, but that is a great hardship on our entire family. Most of you have probably noticed that we never post where we will be and when. We have actually received death threats in the past. It is very seldom that you will catch us writing about our sadness, but it is human nature that we would feel that way. Our children have had to endure more than many people will experience in an entire lifetime, and some days that weighs heavy on our minds. We just want to give them the best life possible, ESPECIALLY because of everything they have been through and continue to endure. They are our heroes, and they make us proud each and every day.
Thank you for taking the time to read this entry. We are grateful to all of you for caring about our family and for keeping us in your thoughts and prayers. Have a wonderful weekend!
With all of that said, it still leaves us in our quest to modify the house we are in. We had someone trying to help us find groups or organizations that would be willing to help, but if they are out there, they are definitely not easy to find. My parents' church and the Fitterer family put together a benefit breakfast this past summer to help us raise money, and the donations from that are enough to put in two ramps. However, the modifications that would benefit Erin the most right now is everything inside the house, and we definitely don't have enough money to even start that project. It has taken us a very long time just to get to the point where we can bring ourselves to ask for help. We have always felt that we should do this on our own, but we now know it is not possible. So now we are asking for suggestions. If anyone out there knows of any groups or organizations that may be willing to help us, please let us know. On someone's suggestion, we did put a donations page up on our site, in case there is anyone out there who would like to make a donation to help Erin. We actually did receive a donation already, and we are forever grateful to this person. There are just no words to thank you for your gift. We didn't expect anything, so that makes it even more special!
We didn't put this here to beg for money. We have had many people asking about Extreme Makeover, and we wanted to tell you all about our situation. This is our reality. We did have a comment on our site about the "doom and gloom" that we write about, but we actually found that pretty amusing. We do often "sugarcoat" our entries, because we don't want to sound like we are wallowing in self-pity. We are so blessed to have our children with us, and very few know just what we have been through. To protect our safety, very few know how often Kevin travels, but that is a great hardship on our entire family. Most of you have probably noticed that we never post where we will be and when. We have actually received death threats in the past. It is very seldom that you will catch us writing about our sadness, but it is human nature that we would feel that way. Our children have had to endure more than many people will experience in an entire lifetime, and some days that weighs heavy on our minds. We just want to give them the best life possible, ESPECIALLY because of everything they have been through and continue to endure. They are our heroes, and they make us proud each and every day.
Thank you for taking the time to read this entry. We are grateful to all of you for caring about our family and for keeping us in your thoughts and prayers. Have a wonderful weekend!
Tuesday, October 16, 2007
As some of you may have guessed, we just returned from another trip to Baltimore, MD, where Erin and Taylor underwent intense physical and occupational therapy for two weeks. It went extremely well, and we are quite happy to report that Taylor is doing so much better. Before we left, she was having a difficult time walking anywhere by herself. She continually tripped, because she dragged her right foot, and she often fell down if we were not by her side. After just two weeks at Kennedy Krieger, Taylor is stronger and walking well. She still has no sensation in her right foot, but her therapists taught her to be more aware of where it is as she is walking. We still have to remind her to straighten it out, but we'll definitely take that over what she was doing before. Thanks Jess, for all of your hard work!! Taylor still has no control of her bladder, and is having issues with her bowel, but we always have high hopes that these functions will return. We will be taking her in very soon for another MRI to see what is going on with her spinal cord. Keep your fingers crossed that everything looks perfect and untethered!
Erin also did a fantastic job again. She had a new therapist, Miss La'Tai, who was wonderful. We want to congratulate Miss Amy and her husband on the birth of their new baby girl, Hannah! We can't wait to meet her! We knew it was a girl!! Anyway, Becca and La'Tai did a lot of work with Erin on handling hills, ramps and curbs in her wheelchair and dynamic stander. It was hard work, but Erin rose to the occasion yet again. Of course, they also worked on trunk stability, crawling, walking (on the litegait and in the hydrotrack), dressing/undressing, transferring to and from her wheelchair, and many other skills. Wow, I was exhausted just watching her! We're just so proud of her, of all of our kids, for being so strong and tenacious.
Another reason we had such a fantastic time in Baltimore was because we were able to spend the two weeks with some very good friends. The first week we were there, our dear friends Tanya and Nick Deyo were with us, both at the Ronald McDonald House and Kennedy Krieger. While we hate the fact that Erin has to be in a wheelchair, it is great to see her with other kids like herself. She and Nick actually have the exact same spinal cord injury, so it is wonderful for us to be able to share information with the Deyos. Tanya is just such an amazing person and friend, and I feel so blessed to know her! And Nick, what an absolute cutie!!! We missed your girls, but hopefully we can see them again soon. Thanks for a great week! During our second week, we had the opportunity to hang out with our friends, the Pitts family. Alex and Ryan, another set of twins, and their mom, Melissa, are always fun to be around! Alex has a spinal cord injury and Ryan does not, so our girls really feel a strong connection to them. Taylor just loves them both! Because the boys are 7, Melissa is able to give us great information, and we truly appreciate all of her help. She, too, is a wonderful friend that I am honored to know.
One of the other amazing things that happened while we were in Baltimore was that we were able to have dinner with our friend, Mr. Jimmy and his fiance Melissa (do you see a name trend here?). They are such outstanding people, and Jimmy truly inspires great hope in our hearts. He was once a quadriplegic, with no use of his arms or legs, and he can now walk with just a cane. He can WALK!!! He showed us pictures of himself in the hospital right after the accident, and it's hard to believe how far he has come. What an inspiration! Thank you Jimmy! We know that it is possible, and we're working hard to give Erin the best chance to get there too. Also, thanks to Melissa, who made the only meal that Erin would eat during our stay in Baltimore! Thank you for sending left-overs home with us so she could have another meal that she would eat. I don't know why it is, that she won't eat very well, but we have to figure something out. She has lost weight again, and she now weighs 21 lbs 9 oz. Aaahhh! That is so frustrating. Last year at this time, we were excited that she finally broke 20 lbs, but she hasn't really gone much past that. Anyway, we just wanted to thank Melissa and Jimmy for a great evening and for helping Erin gain back some of the weight she has lost (hopefully).
The other exciting thing that happened while we were in Baltimore took place at the Ronald McDonald House. We always seem to be there when something special happens! Duff, from Charm City Cakes, who has a show on the Food Network called "The Ace of Cakes", came to the house to film their Christmas special. It will air sometime in December -- we will let you know when. Anyway, not only did they make an amazing cake, they brought all of the children presents, which was a huge hit (of course). I will be sure to upload pictures of the cake, as it was truly something to see. So, thank you to Mr. Duff and his entire staff for making the evening so special! We had a great time! Thank you also to everyone at the Ronald McDonald House for once again making our stay as wonderful as it could possibly be! We love you all!
O.k., so tomorrow we will take some time to address the questions about Extreme Makeover: Home Edition. We have a lot to say on that as well, but I'm completely exhausted tonight. Please take care! Thank you so much for looking in on our family!
Erin also did a fantastic job again. She had a new therapist, Miss La'Tai, who was wonderful. We want to congratulate Miss Amy and her husband on the birth of their new baby girl, Hannah! We can't wait to meet her! We knew it was a girl!!
Anyway, Becca and La'Tai did a lot of work with Erin on handling hills, ramps and curbs in her wheelchair and dynamic stander. It was hard work, but Erin rose to the occasion yet again. Of course, they also worked on trunk stability, crawling, walking (on the litegait and in the hydrotrack), dressing/undressing, transferring to and from her wheelchair, and many other skills. Wow, I was exhausted just watching her! We're just so proud of her, of all of our kids, for being so strong and tenacious. Another reason we had such a fantastic time in Baltimore was because we were able to spend the two weeks with some very good friends. The first week we were there, our dear friends Tanya and Nick Deyo were with us, both at the Ronald McDonald House and Kennedy Krieger. While we hate the fact that Erin has to be in a wheelchair, it is great to see her with other kids like herself. She and Nick actually have the exact same spinal cord injury, so it is wonderful for us to be able to share information with the Deyos. Tanya is just such an amazing person and friend, and I feel so blessed to know her! And Nick, what an absolute cutie!!! We missed your girls, but hopefully we can see them again soon. Thanks for a great week! During our second week, we had the opportunity to hang out with our friends, the Pitts family. Alex and Ryan, another set of twins, and their mom, Melissa, are always fun to be around! Alex has a spinal cord injury and Ryan does not, so our girls really feel a strong connection to them. Taylor just loves them both! Because the boys are 7, Melissa is able to give us great information, and we truly appreciate all of her help. She, too, is a wonderful friend that I am honored to know.
One of the other amazing things that happened while we were in Baltimore was that we were able to have dinner with our friend, Mr. Jimmy and his fiance Melissa (do you see a name trend here?). They are such outstanding people, and Jimmy truly inspires great hope in our hearts. He was once a quadriplegic, with no use of his arms or legs, and he can now walk with just a cane. He can WALK!!! He showed us pictures of himself in the hospital right after the accident, and it's hard to believe how far he has come. What an inspiration! Thank you Jimmy! We know that it is possible, and we're working hard to give Erin the best chance to get there too. Also, thanks to Melissa, who made the only meal that Erin would eat during our stay in Baltimore! Thank you for sending left-overs home with us so she could have another meal that she would eat. I don't know why it is, that she won't eat very well, but we have to figure something out. She has lost weight again, and she now weighs 21 lbs 9 oz. Aaahhh! That is so frustrating. Last year at this time, we were excited that she finally broke 20 lbs, but she hasn't really gone much past that. Anyway, we just wanted to thank Melissa and Jimmy for a great evening and for helping Erin gain back some of the weight she has lost (hopefully).
The other exciting thing that happened while we were in Baltimore took place at the Ronald McDonald House. We always seem to be there when something special happens! Duff, from Charm City Cakes, who has a show on the Food Network called "The Ace of Cakes", came to the house to film their Christmas special. It will air sometime in December -- we will let you know when. Anyway, not only did they make an amazing cake, they brought all of the children presents, which was a huge hit (of course). I will be sure to upload pictures of the cake, as it was truly something to see. So, thank you to Mr. Duff and his entire staff for making the evening so special! We had a great time! Thank you also to everyone at the Ronald McDonald House for once again making our stay as wonderful as it could possibly be! We love you all!
O.k., so tomorrow we will take some time to address the questions about Extreme Makeover: Home Edition. We have a lot to say on that as well, but I'm completely exhausted tonight. Please take care! Thank you so much for looking in on our family!
Sunday, October 7, 2007
Sorry for the lack of updates last week. We were extremely busy! I will do my best to get a few in this week, but I can't make any promises. Everyone is doing well. Taylor has improved dramatically. She still does not have sensation in her foot, but she is walking better. She has been doing great in physical therapy, and it has made a huge difference. She is regaining control of her bowels, but she still has very little bladder control. We catheterize her every 3 hours, but she is doing o.k. with it. We are slowly but surely introducing the concept of self-cathing, but she is still a little nervous about the idea of it. We'll just take it at her pace.
Erin is doing extremely well with physical therapy as well. It's so great to have them both back in it.
Jade is her ever-happy self. She makes us laugh every day.
Kevin Jr. has started his sophomore year off well, and we are so proud of him.
We hope you all have a great week. Thank you to those who took time to send Taylor cards, stickers, paper dolls, etc. She was so excited to receive them. Also, a huge thank you to Janeen for sending the box of home school materials!!! They are wonderful!!!
Hugs and kisses from us to you!
Everyone is doing well. Taylor has improved dramatically. She still does not have sensation in her foot, but she is walking better. She has been doing great in physical therapy, and it has made a huge difference. She is regaining control of her bowels, but she still has very little bladder control. We catheterize her every 3 hours, but she is doing o.k. with it. We are slowly but surely introducing the concept of self-cathing, but she is still a little nervous about the idea of it. We'll just take it at her pace.Erin is doing extremely well with physical therapy as well. It's so great to have them both back in it.
Jade is her ever-happy self. She makes us laugh every day.
Kevin Jr. has started his sophomore year off well, and we are so proud of him.
We hope you all have a great week. Thank you to those who took time to send Taylor cards, stickers, paper dolls, etc. She was so excited to receive them. Also, a huge thank you to Janeen for sending the box of home school materials!!! They are wonderful!!!
Hugs and kisses from us to you!
Sunday, September 30, 2007
Taylor and I spent all of last night in the Emergency Room at Children's Hospital. She has had a fever almost all week, and she started to get headaches that were bad enough to make her cry. Remember, she didn't complain about any pain at all, before or after her surgery, so when she cried with each headache, we really took it seriously. One of the big fears was Meningitis, but she didn't have any of the tell-tale signs of it. Our goal in going to the ER was just to find out what was causing the fever and headaches. When her temperature got up to 102.5 yesterday afternoon and she was crying from the pain in her head, we finally decided it was time to go. It takes us an hour (with no traffic) to drive to the hospital, and then we spent hours upon hours sitting and waiting. After doing blood tests and a urine culture and finally seeing the neurosurgery resident on call, we were able to leave. Some of her blood counts were slightly elevated but not enough to cause concern. They believe it's just some sort of virus that has to run it's course. Taylor, once again, was good beyond all expectations. She sat quietly, and she actually watched as they drew blood from her arm. We're just so proud of her!! Anyway, we finally got home at about 12:45 a.m. Wow, talk about a long day! I sure wish Taylor could catch a break! She has had such a rough time these past few months, and there seems to be no end in sight. Oh, we need to say a HUGE thank you to Kim for coming over to take care of Erin and Jade. That made the evening so much easier!
We'll be getting back into therapy this week, so we are going to be really busy again. I'm hoping that the therapists have some great ideas to help Taylor with her walking. We're hoping against hope that it starts to get better soon, for Taylor's sake.
Everyone else in the family is doing great! We can't wait to get Erin back into therapy as well, because she is just so determined. She talks about how she will be able to walk someday. Keep believing, Erin!
Thanks for stopping in. We will try to update again soon.
We'll be getting back into therapy this week, so we are going to be really busy again. I'm hoping that the therapists have some great ideas to help Taylor with her walking. We're hoping against hope that it starts to get better soon, for Taylor's sake.
Everyone else in the family is doing great! We can't wait to get Erin back into therapy as well, because she is just so determined. She talks about how she will be able to walk someday. Keep believing, Erin!
Thanks for stopping in. We will try to update again soon.
Thursday, September 27, 2007 #2
Well, to add to our anxiety, Taylor ended up with a nosebleed this afternoon. It probably doesn't mean anything, but it doesn't help our nerves! She is fine, and she actually seems to be feeling much better right now. Of course, that could be because the Motrin is working. We'll see how she does this evening when the Motrin wears off.
Also, I regretfully neglected to thank some very important people the other day. We want to thank Miss Emily for EVERYTHING! We also want to thank Cindy for coming up to visit and bringing all 3 girls a stuffed animal. After a week, they are still the favorite toys in the house. Oh, and you can still call me tomorrow! Thank you to Mr. Gibson for sending the Ben & Jerry's ice cream. It means so much to Taylor that you still think about her and do such special things to cheer her up. Most importantly, I didn't thank our families. You are always there to support, encourage and lift us up in times of need, even if you are far away. Thank you for everything!
Another quick note. We have had some old friends leave us messages on our guestbook, and we would really like to get in touch. We are unable to see your e-mail address when you leave a message, so there is no way for us to reply. If anyone would like to get in touch with us and receive a response, please e-mail us at: bucklestwins@aol.com
We'll keep you updated on Taylor's condition.
Also, I regretfully neglected to thank some very important people the other day. We want to thank Miss Emily for EVERYTHING! We also want to thank Cindy for coming up to visit and bringing all 3 girls a stuffed animal. After a week, they are still the favorite toys in the house. Oh, and you can still call me tomorrow! Thank you to Mr. Gibson for sending the Ben & Jerry's ice cream. It means so much to Taylor that you still think about her and do such special things to cheer her up. Most importantly, I didn't thank our families. You are always there to support, encourage and lift us up in times of need, even if you are far away. Thank you for everything!
Another quick note. We have had some old friends leave us messages on our guestbook, and we would really like to get in touch. We are unable to see your e-mail address when you leave a message, so there is no way for us to reply. If anyone would like to get in touch with us and receive a response, please e-mail us at: bucklestwins@aol.com
We'll keep you updated on Taylor's condition.
Thursday, September 27, 2007
First and foremost, Erin has been chosen to be a recipient of a service dog!!! We are beyond excited! The smile on her face when we told her was absolutely priceless, and we want to thank Paws4People for putting it there. We will now begin our public service project to help raise awareness about service dogs, and we will work on some fundraisers for the organization. Paws4People will not charge us for Erin's dog, which is amazing. Most organizations usually charge hundreds, or even thousands, of dollars for the training of the dog, but we will not have to pay anything; however, we will do all we can to raise money for them so they have the funding to train Erin's dog.
Taylor is still having a rough time. She can't do very much yet, and when she is up, she is still extremely weak. She has been getting headaches for the past couple of days, and she now has a low-grade fever. We have been in touch with her neurosurgeon, and we are ready to take her back to the hospital if this escalates. Taylor has been so very emotional, and we're worried that she might be a little bit depressed. She realizes that she can't walk like she used to, let alone run (at all). She has to be catheterized every 3-4 hours, and she has to lie around most of the day. It's so hard for us to see her like this, because we have definitely seen a huge change in her. She is not the smiley, happy little girl from a few weeks ago. We're starting to see glimpses of her old self, but each time she tries to walk or each time I have to cath her, it's like she takes another step back. It's hard for us to see her trying to walk, shuffling across the floor. We're ever so thankful that she can walk at all, but it's hard to keep the sadness away sometimes.
We're taking one day at a time, and we appreciate all of the thoughts and prayers that help us get through.
Taylor is still having a rough time. She can't do very much yet, and when she is up, she is still extremely weak. She has been getting headaches for the past couple of days, and she now has a low-grade fever. We have been in touch with her neurosurgeon, and we are ready to take her back to the hospital if this escalates. Taylor has been so very emotional, and we're worried that she might be a little bit depressed. She realizes that she can't walk like she used to, let alone run (at all). She has to be catheterized every 3-4 hours, and she has to lie around most of the day. It's so hard for us to see her like this, because we have definitely seen a huge change in her. She is not the smiley, happy little girl from a few weeks ago. We're starting to see glimpses of her old self, but each time she tries to walk or each time I have to cath her, it's like she takes another step back. It's hard for us to see her trying to walk, shuffling across the floor. We're ever so thankful that she can walk at all, but it's hard to keep the sadness away sometimes.
We're taking one day at a time, and we appreciate all of the thoughts and prayers that help us get through.
Tuesday, September 25, 2007
Taylor is starting to do better each day. We can tell that she is feeling a little stronger, and she has the desire to get up and moving more with every day that passes. She has not had any return of sensation yet in her leg and foot, but we know that is a slow process. We took the girls on a walk through our neighborhood yesterday, just to get them outside to enjoy the beautiful weather. We could tell that Taylor was very happy to be outside. We put her in the wagon with the seat and backrest well padded. It was a nice outing for all of us! Today will be another day of just hanging out, laying low, and trying to keep everyone entertained.
We want to thank everyone at Children's National Medical Center in Washington D.C. for taking care of our entire family during Taylor's hospital stay. We are eternally grateful for everything they continue to do for us, and we could not have found a better hospital. Dr. Keating, you are amazing, and we thank you from the bottom of our hearts for taking care of our daughter as if she were your own. Thank you to all of the nurses and other doctors who treated Taylor with special care. And, of course, thank you to Miss Jackie, Miss Stephanie, Grandma Terry, Miss Nadia, Miss Katie, Miss Alisha, and the many others who make the extra effort to make our hospital stays an easier experience! We love all of you!!! Children's is truly like a second home to us (I don't know if that's a good thing or not)!
I forgot to mention that last Friday the girls had a special treat while at the hospital. Barney came to visit, and the girls were able to sing and dance with him. It was so much fun to see the smiles on their faces. Taylor was pretty sad that she could not stand up to dance, but at least she was able to get out of her bed and room to go see him. There was also a visit from a group of dogs, which had all of the girls extremely excited. They were able to play with them and even hold one. I will definitely try to get pictures up today. It was a fun day for all of us. We truly appreciate that the hospital puts together such wonderful things for all of the children.
Thank you again for checking in. Have a great day!
We want to thank everyone at Children's National Medical Center in Washington D.C. for taking care of our entire family during Taylor's hospital stay. We are eternally grateful for everything they continue to do for us, and we could not have found a better hospital. Dr. Keating, you are amazing, and we thank you from the bottom of our hearts for taking care of our daughter as if she were your own. Thank you to all of the nurses and other doctors who treated Taylor with special care. And, of course, thank you to Miss Jackie, Miss Stephanie, Grandma Terry, Miss Nadia, Miss Katie, Miss Alisha, and the many others who make the extra effort to make our hospital stays an easier experience! We love all of you!!! Children's is truly like a second home to us (I don't know if that's a good thing or not)!
I forgot to mention that last Friday the girls had a special treat while at the hospital. Barney came to visit, and the girls were able to sing and dance with him. It was so much fun to see the smiles on their faces. Taylor was pretty sad that she could not stand up to dance, but at least she was able to get out of her bed and room to go see him. There was also a visit from a group of dogs, which had all of the girls extremely excited. They were able to play with them and even hold one. I will definitely try to get pictures up today. It was a fun day for all of us. We truly appreciate that the hospital puts together such wonderful things for all of the children.
Thank you again for checking in. Have a great day!
Sunday, September 23, 2007
Well, we are finally home (again). We actually got home last night, but we have spent the day just trying to adjust to our new schedule, doing laundry, and trying to entertain Taylor. She still has to lie around and not do much. It's been pretty tough on her, but it is much better now that we're home. She didn't have any more leakage of spinal fluid, so they discharged us yesterday with strict orders to return immediately if we see any sign of fluid coming from her incision. Taylor was so relieved when they said she could go home -- we couldn't get out of the hospital fast enough for her! I have to say that we were pretty happy about it ourselves. The neurosurgeon gave us the option of staying a few more days if we didn't feel comfortable yet taking her home. I guess you know our answer to that!
Anyway, Taylor still has no feeling in her right foot and lower leg. She is walking a little better (when she has the chance), but we still have to hold on to her. We are waiting for her walker and wheelchair, which has not been delivered yet (no surprise). We have to catheterize her every 3-4 hours, which has been tough on all of us. I'm not saying it's tough on us because it's an inconvenience; anything that we need to do for our children, we will happily do. It has been difficult on us because it is difficult for Taylor. Here is a little girl who, while she has had bladder issues over the years, has always been able to go to the bathroom by herself. Now we have to do it for her, and she needs to wear pull-ups. Hopefully this is all temporary, but we don't see an end in sight yet. She is not even close to being able to do it on her own. Thankfully we had decided to homeschool the girls this year, so we don't have to worry about sending her back to school with all of these issues. Next year, once we have everything resolved and figured out, we will send her to school. In the meantime, I am very excited to be homeschooling them. It will help with our crazy physical therapy schedule, as well as our many doctors appointments. I fully expect them all to fly through the curriculum with ease.
We still have a long way to go with Taylor, but we are so thankful to be out of the hospital. We want to thank everyone for visiting our site to see how she is doing. There are no words to express our gratitude for the many who have been keeping Taylor, and our family, in their thoughts and prayers. Thank you to those of you who took the time to send Taylor a little something. She was thrilled with all of it.
We hope you have a wonderful week. We will continue to let you know how Taylor and the rest of our family is doing. Take care!
Anyway, Taylor still has no feeling in her right foot and lower leg. She is walking a little better (when she has the chance), but we still have to hold on to her. We are waiting for her walker and wheelchair, which has not been delivered yet (no surprise). We have to catheterize her every 3-4 hours, which has been tough on all of us. I'm not saying it's tough on us because it's an inconvenience; anything that we need to do for our children, we will happily do. It has been difficult on us because it is difficult for Taylor. Here is a little girl who, while she has had bladder issues over the years, has always been able to go to the bathroom by herself. Now we have to do it for her, and she needs to wear pull-ups. Hopefully this is all temporary, but we don't see an end in sight yet. She is not even close to being able to do it on her own. Thankfully we had decided to homeschool the girls this year, so we don't have to worry about sending her back to school with all of these issues. Next year, once we have everything resolved and figured out, we will send her to school. In the meantime, I am very excited to be homeschooling them. It will help with our crazy physical therapy schedule, as well as our many doctors appointments. I fully expect them all to fly through the curriculum with ease.
We still have a long way to go with Taylor, but we are so thankful to be out of the hospital. We want to thank everyone for visiting our site to see how she is doing. There are no words to express our gratitude for the many who have been keeping Taylor, and our family, in their thoughts and prayers. Thank you to those of you who took the time to send Taylor a little something. She was thrilled with all of it.
We hope you have a wonderful week. We will continue to let you know how Taylor and the rest of our family is doing. Take care!
Thursday, September 20, 2007
Taylor had a pretty uneventful day. She has to lie completely flat and was allowed to sit up only for dinner tonight. She's on high doses of antibiotics. They actually had to change her IV sight because the antibiotics were irritating her vein. She seemed to have leaked a little spinal fluid during the night last night, but she didn't leak at all today. She will probably be in the hospital at least a few more days. Tomorrow they will allow her to sit up more to see if the spinal fluid will leak again, and if so, they want to pin point the spot where it's coming from. If they can find the spot where it's leaking, they will be able to put a stitch in to seal the wound, but if they can't find the exact spot, then Taylor will have to lie flat until her body can seal the wound on its own.
We would like to wish a Very Happy Birthday to Kevin Jr., it's hard to believe that he's almost ready to drive. Also to T-Kim, Kevin's sister, thank you for being there for us. We love you both dearly, we hope you had wonderful days.
Thank you again for checking in on us, we truly appreciate your continued thoughts and prayers. We will try to update tomorrow.
We would like to wish a Very Happy Birthday to Kevin Jr., it's hard to believe that he's almost ready to drive. Also to T-Kim, Kevin's sister, thank you for being there for us. We love you both dearly, we hope you had wonderful days.
Thank you again for checking in on us, we truly appreciate your continued thoughts and prayers. We will try to update tomorrow.
Wednesday, September 19, 2007
Taylor has been re-admitted to the hospital. We brought her in this morning, although she wasn't leaking any spinal fluid when we first got here. After meeting with the doctors and agreeing that we could take her home and keep her flat the next few days, we decided to get some lunch before heading home. After lunch, we went out to the van and before putting Taylor in we checked her back. We noticed that it was again leaking, but she wasn't showing any other symptoms of the spinal fluid leak. We decided to take her home and follow the plan that we were given. After driving about 15 minutes, Taylor began to complain that her back was hurting. Now remember, she's only complained once since her surgery and that was immediately after coming out of the operating room. So we turned around and headed back to the hospital. They immediately began the admission process. After waiting several hours in an observation room, we were then moved back up to the same floor that she was originally on. She will be in the hospital at least two days, possibly more. The doctors biggest fear is that she will get meningitis, because if spinal fluid can get out, bacteria can get in. She is now back on antibiotics to help prevent any infection. Taylor was extremely sad about having to return back to the hospital. We tried to reassure her that this was the best thing for her and that we would be right there by her side. We will let you know tomorrow about her progress.
Tuesday, September 18, 2007
Well, Taylor is now leaking a clear fluid from her incision site. As she was standing at the sink tonight brushing her teeth, it was actually dripping out and making a puddle on the floor. Kevin and I jumped into action, because we were told that if she is leaking anything out of her incision, she needs to be taken to the E.R. We do know that cerebral spinal fluid is clear, and while we are hoping it is not that, we are fairly sure that it is. Aaaahhhh!! Just a little break, please! Anyway, after a quick call to the neurosurgery resident on call, we had to make some decisions. We got her to lie down flat, which helped the leaking to stop. We will definitely be taking her in, though, as it could be very dangerous to her. We will let you know what is going on as soon as we have some answers.
Monday, September 17, 2007
WE ARE HOME!!!! We left the hospital quite late, but we're here. The last few days have been long and exhausting, and we are so thankful to be back home. Taylor has had a lot of issues with her bowel and bladder, and while they still have not resolved themselves, we feel we have them under control. In order to leave the hospital today, we were required to begin catheterizing her. Ever since her first surgery, Taylor has been terrified of being catheterized. Her first experience with it was quite traumatizing. Of course, this made me even more nervous to be the one doing it, but it was definitely something we had to do. The first time the nurse cathed her today, Taylor had over 600 cc in her bladder. A child her age holds an average of 250 cc. Poor thing! Also, she had some issues with having a bowel movement -- let me just say that her stomach looked like mine when I was pregnant with Erin and Jade! It still does, actually, so we're hoping it gets better for her soon. She must be so uncomfortable, but she still does not complain at all. Anyway, in order for Taylor to be discharged tonight, I had to demonstrate that I was competent in catheterizing her. Oh, did I mention that it was my first time doing it? Did I also mention that Taylor REALLY wanted to come home today? No pressure! So, amazingly, I did a great job the very first time, and the nurse went ahead with the discharge papers. We want to thank our wonderful nurse, Jody, for being a great teacher!
O.k., now for the disheartening news. We were able to get Taylor up and walking yesterday. Of course, we knew that she would be weak. We also knew that she still has no feeling at all in her right foot and the entire right side of her leg from the knee down. However, it was quite difficult to see how hard it was for her. Don't get me wrong, we are extremely happy that she is able to walk at all; it's just not what we would wish for our little girl. The physical therapist came up to work with her today, and we found that Taylor's right hip is quite weak as well. Since she can't feel her foot, it is really difficult for her to take steps. She has a hard time picking her leg up, so she kind of drags her leg, and when she has a shoe on, the toe catches on almost every step. She would have fallen numerous times had we not been holding on to her. Her gait (the way she walks) is very different from what it was before the surgery, and we don't know if she will ever regain all sensation and function. Our hopes are high, and we know we had no other option, but that doesn't make it any easier to take right now. She will have to use a walker and a wheelchair for now, and let's hope and pray that it is just temporary.
After we arrived home tonight, and we were getting her ready for bed, Taylor started crying. As I was helping her walk to the bathroom to brush her teeth she said, "Mommy, why did I have to have surgery again? I can't even walk anymore!" Wow, I truly felt like I had been punched in the stomach. It was everything I could do not to cry as I tried explaining it to her. Kevin took his turn explaining it as I stepped out of the room to shed and dry my tears. I know there is a plan and a purpose for everything, it's just difficult to fathom what those are sometimes. This little girl is the sweetest person you will ever meet, and she definitely doesn't deserve to go through this. I wish they could all just be kids for a few days, without having to worry about physical therapy, doctors appointments, surgery, having to be catheterized and wear diapers, or whether they can walk or not.
The one thing we do know is that we will get through this together, as a family. We also truly appreciate your continued support, thoughts and prayers. We couldn't ask for better people in our lives! Thank you for caring about us and checking in so often. We'll update again soon with new pictures as well.
O.k., now for the disheartening news. We were able to get Taylor up and walking yesterday. Of course, we knew that she would be weak. We also knew that she still has no feeling at all in her right foot and the entire right side of her leg from the knee down. However, it was quite difficult to see how hard it was for her. Don't get me wrong, we are extremely happy that she is able to walk at all; it's just not what we would wish for our little girl. The physical therapist came up to work with her today, and we found that Taylor's right hip is quite weak as well. Since she can't feel her foot, it is really difficult for her to take steps. She has a hard time picking her leg up, so she kind of drags her leg, and when she has a shoe on, the toe catches on almost every step. She would have fallen numerous times had we not been holding on to her. Her gait (the way she walks) is very different from what it was before the surgery, and we don't know if she will ever regain all sensation and function. Our hopes are high, and we know we had no other option, but that doesn't make it any easier to take right now. She will have to use a walker and a wheelchair for now, and let's hope and pray that it is just temporary.
After we arrived home tonight, and we were getting her ready for bed, Taylor started crying. As I was helping her walk to the bathroom to brush her teeth she said, "Mommy, why did I have to have surgery again? I can't even walk anymore!" Wow, I truly felt like I had been punched in the stomach. It was everything I could do not to cry as I tried explaining it to her. Kevin took his turn explaining it as I stepped out of the room to shed and dry my tears. I know there is a plan and a purpose for everything, it's just difficult to fathom what those are sometimes. This little girl is the sweetest person you will ever meet, and she definitely doesn't deserve to go through this. I wish they could all just be kids for a few days, without having to worry about physical therapy, doctors appointments, surgery, having to be catheterized and wear diapers, or whether they can walk or not.
The one thing we do know is that we will get through this together, as a family. We also truly appreciate your continued support, thoughts and prayers. We couldn't ask for better people in our lives! Thank you for caring about us and checking in so often. We'll update again soon with new pictures as well.
Friday, September 14, 2007
This is just a quick update to let you know that Taylor is doing well. They removed her catheter this morning but had to place it back in after she began to have some abdominal pain. Physical medicine, PT and OT stopped by and began to work with her; there wasn't much they could do until she's able to sit up. The Neurosurgeon gave her the green light to sit up tomorrow so hopefully we can begin to see where she's at physically. She still doesn't have any sensation in her right foot, but we're keeping a close eye on that. Thanks for the entries in our guestbook and to those of you who sent gifts, cards and stickers for Taylor. Words can't express our gratitude. We will check-in with everyone tomorrow.
Thursday, September 13, 2007
Another good day for Taylor. She slept well last night, and she still has not complained at all of any pain. Daddy, Grandma, Erin and Jade came up to visit, and Taylor really enjoyed seeing them. She's probably getting a little tired of watching T.V. and movies. We also do some reading throughout the day, but there is not much else she can do. Yesterday she asked me, "So Mommy, what are we going to do this afternoon?" My response was, "Hmmmmm.... well, I guess we're doing it, Taylor". Her doctor gave her permission to roll onto her side today if she wanted, but she said she would rather stay on her tummy. That's actually a better position for healing, but the neurosurgeon thought she was probably getting tired of lying in the same position. She does have to spend time with her head turned to both sides, as the muscles in her neck would get really stiff, and then we would have other issues to deal with! Tomorrow she may be able to turn on her side and elevate the head of the bed just slightly. We still have to keep her pretty flat to prevent any leakage of spinal fluid.
Taylor still has no sensation in her right foot and ankle, but we are trying to stay positive about it. She will be evaluated within the next few days by the Rehab department. Hopefully she does not have any weakness or loss of function, but we will see. Once again, we will try to be prepared for every possibility.
Daddy was able to spend the night with Taylor tonight. Yes, it's difficult for me not to be there, but I know how important it is for him to be able to spend this time with her as well. And the great thing for me is that I can spend an entire night without hearing the beeps and alarms going off, and without nurses constantly coming in to check her vitals and administer medicines. Don't get me wrong, we absolutely love her nurses, and we know they are just doing their job, but it is difficult to get any sleep with all of that going on. I will go back in the morning to see our brave little girl! She constantly amazes me with her positive attitude and sunny disposition.
We can't thank you all enough for your constant support. The fact that you care so much about our family means the world to us.
Oh, check out the new pictures I posted. There are a few from before the surgery and a few of Taylor in her hospital room.
Taylor still has no sensation in her right foot and ankle, but we are trying to stay positive about it. She will be evaluated within the next few days by the Rehab department. Hopefully she does not have any weakness or loss of function, but we will see. Once again, we will try to be prepared for every possibility.
Daddy was able to spend the night with Taylor tonight. Yes, it's difficult for me not to be there, but I know how important it is for him to be able to spend this time with her as well. And the great thing for me is that I can spend an entire night without hearing the beeps and alarms going off, and without nurses constantly coming in to check her vitals and administer medicines. Don't get me wrong, we absolutely love her nurses, and we know they are just doing their job, but it is difficult to get any sleep with all of that going on. I will go back in the morning to see our brave little girl! She constantly amazes me with her positive attitude and sunny disposition.
We can't thank you all enough for your constant support. The fact that you care so much about our family means the world to us.
Oh, check out the new pictures I posted. There are a few from before the surgery and a few of Taylor in her hospital room.
Wednesday, September 12, 2007
Taylor had a good day today. She woke up about 5:30am and she was STARVING! The last time she ate anything was Monday night for dinner. This morning she had 3 pieces of bacon, scrambled eggs, fresh fruit, two waffles and a big glass of juice. The nurses were able to control her pain very well last night and continued to do so throughout the day. She was very comfortable all day. She never complained once, she's been the model patient. Everyone wants to take her home because she's been so sweet and accommodating. The Neurosurgeon came by to check on her and wants her to lie flat on her tummy. The goal still is to control the pain and prevent infection and muscle spasms. The right side of her face is really swollen because all of the fluid that's pooling there because of her position. We tried turning her head to the other side, but it was really uncomfortable for her, so we moved it back. She's still on all five medications that she was taking prior to the surgery, in addition to, morphine and valium. We're sure that there are more, but can't remember them right now. As of right now, she's lost sensation and strength in her lower right leg, (below the knee down) and complete sensation loss in her right foot. There's a possibility that this may return, but she was missing some prior to the surgery so we're not quite sure how much if any, will. There's a possibility that we may have to do inpatient rehab after she's discharged from the hospital at a rehab facility. We will speak with the Neurosurgeon tomorrow concerning this, along with someone from the hospital's Physical Therapy section. Again, thank you for checking in on us.
Tuesday, September 11, 2007 (Surgery Update)
The surgeon didn't put Taylor to sleep until 1:45pm and he came out at 7:55pm to tell us that everything was complete. The surgery went well, the doctor said that he was able to untether her cord. Taylor is in an extreme amount of pain right now, but she's being very brave and has only cried a few tears. Neurologically, she appears to be doing okay, but time will be the judge of that. The next few days will center around infection control, pain management and leakage of spinal fluid. If she doesn't experience any complications, she will probably be hospitalized 5-7 days. Some of you may have guessed by now that this is Kevin and NOT Melissa writing. I'm definitely not as fluid as she is, so bear with me. We will update tomorrow evening on her progress, thank you to everyone for your continued support and prayers.
We will update tomorrow evening on her progress, thank you to everyone for your continued support and prayers.Tuesday, September 11, 2007
Taylor's surgery time has been moved up (thankfully). It is now scheduled to begin at 11:45 a.m. We will try to post an update at some point tonight, or we will have someone post an update on our guestbook. Thank you so much for all of your thoughts and prayers for Taylor, and thank you for checking in. Take a look at our new pictures -- Taylor's braids are adorable!
Monday, September 10, 2007
We had a wonderful day yesterday! A group came to visit us from Paws4People, and we had a great afternoon talking to them. They brought one of their own dogs, which the girls absolutely loved! Taylor and Erin spent the entire time petting her and feeding her little treats. Jade was a little more cautious -- she's a little wary of all dogs. I think she's scared that they will bite her. If we do receive a service dog for Erin, I'm sure it won't take Jade long to warm up to it. Anyway, I'm not sure how long it will take for us to find out if Erin will get one or not, but we're really hoping she can. The number of benefits are extensive. The amazing thing about this organization is that they don't charge the families for the dogs. Most organizations charge quite a bit for someone to get a service dog. This organization runs strictly off of donations, so for those of you who would like to donate to help, possibly Erin, or other children receive a life changing gift, please check out their website at www.paws4people.com
Well, Taylor is already having an emotional day. She got up early this morning, and Kevin took her to get her hair braided. We decided it would be much easier on everyone to control her hair with braids. She's going to be so cute! However, she is a little nervous about getting the braids. Actually, I think it's just because she knows her surgery is tomorrow, and she is very worried about it, so it is manifesting itself in different ways. She doesn't quite know how to express her fears, so they are coming out in everything. We'll just do a lot of snuggling and reassure her that she will be fine. The problem is that she remembers the pain from the first surgery. Even though we keep telling her that this time she will have a button she can push whenever she starts to feel pain, she can't quite fathom how it works. We'll all get through this together, but the build-up for Taylor is the worst part.
My mom is flying in again today, so she can be here to help us out during this time. Thank you, mom, for dropping everything again to be here!!
I will try to post a few pictures today that we have taken recently.
Oh, I've had a few people ask about our P.O. Box address. It is the same one that I posted last time, in August. We also have it posted on our "Contact Us" page. Here it is again, though, for anyone who would like to send Taylor a card. She really enjoyed the ones she's received already. Thank you to those of you who took the time to do that for our little girl!
P.O. Box 2023
Stafford, VA 22555
We want to thank everyone for their thoughts and prayers, especially during difficult times like these. You just have no idea how much it means to us that so many people care about our family. We will try to update as soon as we can after Taylor's surgery, although tomorrow will be an extremely long day. Her first surgery almost took longer than Erin and Jade's separation surgery. Whew! It's stressful just thinking about it! Anyway, you may want to check our guestbook, in case we are able to call someone and have them post a message with an update. Her surgery doesn't even start until the afternoon, so we probably won't know anything until tomorrow night sometime.
We hope you have a wonderful day!
Well, Taylor is already having an emotional day. She got up early this morning, and Kevin took her to get her hair braided. We decided it would be much easier on everyone to control her hair with braids. She's going to be so cute! However, she is a little nervous about getting the braids. Actually, I think it's just because she knows her surgery is tomorrow, and she is very worried about it, so it is manifesting itself in different ways. She doesn't quite know how to express her fears, so they are coming out in everything. We'll just do a lot of snuggling and reassure her that she will be fine. The problem is that she remembers the pain from the first surgery. Even though we keep telling her that this time she will have a button she can push whenever she starts to feel pain, she can't quite fathom how it works. We'll all get through this together, but the build-up for Taylor is the worst part.
My mom is flying in again today, so she can be here to help us out during this time. Thank you, mom, for dropping everything again to be here!!
I will try to post a few pictures today that we have taken recently.
Oh, I've had a few people ask about our P.O. Box address. It is the same one that I posted last time, in August. We also have it posted on our "Contact Us" page. Here it is again, though, for anyone who would like to send Taylor a card. She really enjoyed the ones she's received already. Thank you to those of you who took the time to do that for our little girl!
P.O. Box 2023
Stafford, VA 22555
We want to thank everyone for their thoughts and prayers, especially during difficult times like these. You just have no idea how much it means to us that so many people care about our family. We will try to update as soon as we can after Taylor's surgery, although tomorrow will be an extremely long day. Her first surgery almost took longer than Erin and Jade's separation surgery. Whew! It's stressful just thinking about it! Anyway, you may want to check our guestbook, in case we are able to call someone and have them post a message with an update. Her surgery doesn't even start until the afternoon, so we probably won't know anything until tomorrow night sometime.
We hope you have a wonderful day!
Saturday, September 8, 2007
This will be a quick update tonight. I hope to put a longer one up tomorrow. We have been trying to take it easy over the past few days, just to keep Taylor relaxed. She is quite anxious and asks every day, "how many more days until my surgery?" We did take everyone to Chuck E. Cheese's today, which was one thing Taylor wanted to do. They were all very excited (well, I'm sure Kevin Jr. wasn't that excited, as he is almost 15, but he was a good sport about it). We want to thank Monique and Bernie for the gift card so we could take the family today -- it was a great outing for everyone!
For the past year, we have been trying to find an organization that would be willing to provide Erin with a service dog. Well, we finally found one, thanks to the Meek family, that will give children Erin's age the opportunity to have a service dog. We have been in contact with them, and we filled out our application as soon as we knew this was really a possibility. The name of this group is Paws4People. Please check them out at http://www.paws4people.org Our family is extremely excited, because they are coming to our house tomorrow to see if Erin (and our family) would be a suitable match for one of their highly trained dogs. Erin cannot stop talking about it. She would be the happiest girl in the world if she were able to get her own service dog. She was able to see one in action the last time we were at Kennedy Krieger, and she had the opportunity to speak to his owner. We asked many questions, and Erin still tells us everyday all of the things "her" service dog could help her with. She even wished on a star (Star light, star bright....) for a service dog. Oh, she's too cute!
Kevin Jr. has completed his first week of school, and he seems pretty confident about being a sophomore. We are so proud of him, and we hope he has his best year yet.
I'll try to update at least one more time before Taylor's surgery on Tuesday. We will update as soon after her surgery as possible, so everyone will know the outcome. I'm trying not to think about it too much, but I'm not sure that's possible. Of course, her symptoms of the tethered cord have completely backed off this last week, which brings about moments of weakness on my part. For a split second every so often, I will wonder if she really needs the surgery. Now, it is only because I am nervous, and I hate having to hand off one of my children to the anesthesiologists, that I even have thoughts like this. We do know that she needs this surgery, but it doesn't make it any easier.
We hope the rest of your weekend is wonderful! Take care!
For the past year, we have been trying to find an organization that would be willing to provide Erin with a service dog. Well, we finally found one, thanks to the Meek family, that will give children Erin's age the opportunity to have a service dog. We have been in contact with them, and we filled out our application as soon as we knew this was really a possibility. The name of this group is Paws4People. Please check them out at http://www.paws4people.org Our family is extremely excited, because they are coming to our house tomorrow to see if Erin (and our family) would be a suitable match for one of their highly trained dogs. Erin cannot stop talking about it. She would be the happiest girl in the world if she were able to get her own service dog. She was able to see one in action the last time we were at Kennedy Krieger, and she had the opportunity to speak to his owner. We asked many questions, and Erin still tells us everyday all of the things "her" service dog could help her with. She even wished on a star (Star light, star bright....) for a service dog. Oh, she's too cute!
Kevin Jr. has completed his first week of school, and he seems pretty confident about being a sophomore. We are so proud of him, and we hope he has his best year yet.
I'll try to update at least one more time before Taylor's surgery on Tuesday. We will update as soon after her surgery as possible, so everyone will know the outcome. I'm trying not to think about it too much, but I'm not sure that's possible. Of course, her symptoms of the tethered cord have completely backed off this last week, which brings about moments of weakness on my part. For a split second every so often, I will wonder if she really needs the surgery. Now, it is only because I am nervous, and I hate having to hand off one of my children to the anesthesiologists, that I even have thoughts like this. We do know that she needs this surgery, but it doesn't make it any easier.
We hope the rest of your weekend is wonderful! Take care!
Monday, September 3, 2007
Well, we took Taylor to a pediatrician last Monday (her doc was unavailable that day), and she thinks Taylor has Sinusitis. She was put on antibiotics for 14-21 days to try to get rid of this cough and sinus congestion that has been plaguing her for over a month. She is finally on the road to recovery, and she seems to be doing better (thankfully). We took her to see her neurosurgeon on Friday. He actually came in off of vacation to see us -- thank you! After looking again at her MRI and examining Taylor, he reiterated that she needs surgery soon. He spent a great deal of time talking to us, discussing all of the risks and possible setbacks/outcomes. We love this man as a surgeon and as someone who will take care of our daughter as if she were his own. We completely trust him and know that he will do everything he can for our little girl. He did say that in his 20+ years as a neurosurgeon he has seen many extremely difficult cases of spinal cord tethering, and Taylor is definitely in the top 10. Wow, that's not a top 10 list we want her to be on! However, this is the only chance she has to maintain function below her waist. If we did nothing, she would eventually be paralyzed from the waist down. We know we've said this before, but every time we think about the surgery and dread sending her into the O.R., we have to remind ourselves that this is the best and only option for her.
O.k., so the surgery is now scheduled for Tuesday, September 11, 2007 (Doesn't the date itself bring a sense of dread?). As of right now, the surgery is scheduled to begin at 2 p.m., but the doctor is trying to get that moved up to an earlier slot. Poor Taylor would not be able to eat the entire day! We hope they can change the time.
Anyway, we'll let you know if anything changes.
We hope you had a wonderful Labor Day weekend. We had a great time! We took the girls to the pool a couple of times, because after her surgery, Taylor will not be able to swim for quite awhile. We're going to try to do a few special things next weekend as well. I want to take a minute to thank my wonderful and amazing husband for a beautiful day today. From start to finish, it was perfect! Thank you sweetheart!
Taylor is having a tough time right now, as she knows her surgery is coming up quickly. She is extremely emotional, but we are doing everything we can to support her and let her know that she will be o.k. She is on 5 different medications, which seems to be upsetting her stomach, so she doesn't have much of an appetite. However, despite all of this, Taylor continues to smile her beautiful smile. We are so very proud of her! We wish we could take this on ourselves, as she certainly doesn't deserve it, and it breaks our hearts to know that this is probably not her last time in the O.R.
Thank you again for checking in on our family. We want to say a very special thank you to those of you who took the time and effort to send Taylor cards. She was so excited to receive cards and stickers in the mail! It means a great deal to Kevin and I that others care so much for our children. You are all so wonderful!
O.k., so the surgery is now scheduled for Tuesday, September 11, 2007 (Doesn't the date itself bring a sense of dread?). As of right now, the surgery is scheduled to begin at 2 p.m., but the doctor is trying to get that moved up to an earlier slot. Poor Taylor would not be able to eat the entire day! We hope they can change the time.
Anyway, we'll let you know if anything changes.
We hope you had a wonderful Labor Day weekend. We had a great time! We took the girls to the pool a couple of times, because after her surgery, Taylor will not be able to swim for quite awhile. We're going to try to do a few special things next weekend as well. I want to take a minute to thank my wonderful and amazing husband for a beautiful day today. From start to finish, it was perfect! Thank you sweetheart!
Taylor is having a tough time right now, as she knows her surgery is coming up quickly. She is extremely emotional, but we are doing everything we can to support her and let her know that she will be o.k. She is on 5 different medications, which seems to be upsetting her stomach, so she doesn't have much of an appetite. However, despite all of this, Taylor continues to smile her beautiful smile. We are so very proud of her! We wish we could take this on ourselves, as she certainly doesn't deserve it, and it breaks our hearts to know that this is probably not her last time in the O.R.
Thank you again for checking in on our family. We want to say a very special thank you to those of you who took the time and effort to send Taylor cards. She was so excited to receive cards and stickers in the mail! It means a great deal to Kevin and I that others care so much for our children. You are all so wonderful!
Friday, August 24, 2007
It has been such a looooong week (actually, the last 2 weeks would fit that description). Amidst all of the surgery stuff with Taylor, we were up in Baltimore, MD at the Kennedy Krieger Institute for another two weeks of intense physical and occupational therapy. Taylor was able to receive therapy there this time as well, which was absolutely wonderful -- Thank you Spencer! My mom had come into town to help us with everything, since we thought we were going to have Taylor in the hospital and Erin going to therapy in two completely different places. It truly would have been crazy had the surgery taken place. Thank you mom, for dropping everything to help us out! We could never thank you enough. Of course, now she probably won't be able to come when Taylor really does have the surgery, but we'll cross that hurdle when we come to it.
Taylor still hasn't recovered from whatever she has. We will be taking her to see her doctor soon, so we can figure out what this is and try to get rid of it. She has been fighting this for 3 1/2 weeks now. Poor thing! Last night she couldn't stop coughing, so Kevin took her downstairs in the Ronald McDonald House and sat with her on the couch for hours until her coughing subsided. I don't think he got ANY sleep. He took my mom to the airport at 4:15 a.m. and then continued on to work. He hasn't had a break since. Wow, I'm exhausted just talking about it!
Erin and Taylor both did amazingly well at KKI this time. Erin continues to prove to us that she hasn't given up yet. She's so determined and such a fighter -- we have no doubt that she will walk someday! She did a lot of work in the hydrotrack (underwater treadmill), where her muscles don't have to fight against gravity to move her legs. Amy, her PT, said that she can feel so much muscle activity as she is helping Erin walk underwater. We wish we could get her in the pool for this kind of therapy more often. It's so beneficial to her, and we don't have to worry about any bone fractures then either. Taylor worked extremely hard as well. Because we see her everyday, we don't necessarily notice the changes in her gait (the way she walks) until they are fairly pronounced. As she was doing her therapy, the things she couldn't do became much more noticeable, which just shows us how much function she has lost because of her tethered spinal cord. It's frustrating, and we sometimes feel like we are fighting a losing battle. The chances of her ever being truly untethered are very slim, and yet we have to keep trying. And then you look at this beautiful little girl, with a gorgeous smile, who doesn't let anything get her down, and we are even more motivated to win this fight. We definitely have a group of heroes in our family, and they constantly teach us lessons in determination, hope, and the joy of living each day. They inspire us to Go Forward and work hard for them.
Jade, our little social butterfly, loves to be at KKI also. She goes around the gym helping people with their therapy. She plays games, retrieves objects, or just sits and talks to them as they receive therapy. Each day she would scan the gym, looking for someone to "play with". She is such a cutie!! The girls all made a number of friends during this stay, and they can't stop talking about them. They had an especially fun time with Grace, Tara and Missy Meek. I will post a few pictures of their therapy playdates sometime this weekend. You can learn more about this amazing family at http://www.caringbridge.org/visit/gracemeek
We also played with a few other special kids. Thanks Theo and Eli for helping Erin with therapy today! Too much fun!
Well, Taylor is once again coughing uncontrollably, so I need to get going. We will let you know when we learn anything new. Thank you so much for stopping in!
Taylor still hasn't recovered from whatever she has. We will be taking her to see her doctor soon, so we can figure out what this is and try to get rid of it. She has been fighting this for 3 1/2 weeks now. Poor thing! Last night she couldn't stop coughing, so Kevin took her downstairs in the Ronald McDonald House and sat with her on the couch for hours until her coughing subsided. I don't think he got ANY sleep. He took my mom to the airport at 4:15 a.m. and then continued on to work. He hasn't had a break since. Wow, I'm exhausted just talking about it!
Erin and Taylor both did amazingly well at KKI this time. Erin continues to prove to us that she hasn't given up yet. She's so determined and such a fighter -- we have no doubt that she will walk someday! She did a lot of work in the hydrotrack (underwater treadmill), where her muscles don't have to fight against gravity to move her legs. Amy, her PT, said that she can feel so much muscle activity as she is helping Erin walk underwater. We wish we could get her in the pool for this kind of therapy more often. It's so beneficial to her, and we don't have to worry about any bone fractures then either. Taylor worked extremely hard as well. Because we see her everyday, we don't necessarily notice the changes in her gait (the way she walks) until they are fairly pronounced. As she was doing her therapy, the things she couldn't do became much more noticeable, which just shows us how much function she has lost because of her tethered spinal cord. It's frustrating, and we sometimes feel like we are fighting a losing battle. The chances of her ever being truly untethered are very slim, and yet we have to keep trying. And then you look at this beautiful little girl, with a gorgeous smile, who doesn't let anything get her down, and we are even more motivated to win this fight. We definitely have a group of heroes in our family, and they constantly teach us lessons in determination, hope, and the joy of living each day. They inspire us to Go Forward and work hard for them.
Jade, our little social butterfly, loves to be at KKI also. She goes around the gym helping people with their therapy. She plays games, retrieves objects, or just sits and talks to them as they receive therapy. Each day she would scan the gym, looking for someone to "play with". She is such a cutie!! The girls all made a number of friends during this stay, and they can't stop talking about them. They had an especially fun time with Grace, Tara and Missy Meek. I will post a few pictures of their therapy playdates sometime this weekend. You can learn more about this amazing family at http://www.caringbridge.org/visit/gracemeek
We also played with a few other special kids. Thanks Theo and Eli for helping Erin with therapy today! Too much fun!
Well, Taylor is once again coughing uncontrollably, so I need to get going. We will let you know when we learn anything new. Thank you so much for stopping in!
Tuesday, August 21, 2007
We just wanted everyone to know that today is Conjoined Twins Day. We have been absolutely blessed to meet a small number of amazing families within the past 3 years who have bravely endured unspeakable hardships while carrying, giving birth, and, for most, losing their beautiful babies. There are very few that make it to the separation process, which entails many difficult decisions and often months in the hospital. We have learned so much from these families and we feel honored to know them. Please join us in celebrating every set of conjoined twins, whether they are here with us or they are watching over us from Heaven. All of us in our special little group have released balloons today as a special tribute to the babies and their families. My girls say that they are sending the balloons to all of the special babies in Heaven. Too sweet!
Happy Conjoined Twins Day!
Oh, really quickly... for everyone who has taken the time to leave a message for us on our guestbook, thank you so much. It truly means the world to us that you would care enough to do it. For those of you who ask us questions, please know that we cannot see your e-mail addresses, so we have no way of writing back to you. If you wouldn't mind, please take a minute to e-mail us so we can get back to you.
We're doing well. Taylor was up most of the night coughing last night, so hopefully she will sleep better tonight. We have a few appointments coming up, so we will let you know how they go.
Take care!
Tuesday, August 21, 2007
Well, the rollercoaster ride continues.... Taylor's surgery has been postponed. She has had a bad cough for the past 3 weeks, and, while her pediatrician could not find the cause last week, she still isn't better. After speaking with the surgeon's assistant, she told us that this cough could lead to possible serious complications after the surgery. With everything else we have to worry about, that is not one we need. She also told us that the anesthesiologist would not want to do the surgery without knowing the origin/cause of the cough. Taylor also has a fever, which is definitely a red flag with surgery. So, as of now, we do not know the new date of her surgery, but she will require one soon. We will let you know as soon as we have more details.
Thank you so much for all of the prayers and well wishes! We are blessed to know you and thankful to have you in our lives. Please keep Taylor in your prayers, as her surgery will most likely still happen within a month's time.
We will write again soon with more information.
Thank you so much for all of the prayers and well wishes! We are blessed to know you and thankful to have you in our lives. Please keep Taylor in your prayers, as her surgery will most likely still happen within a month's time.
We will write again soon with more information.
Sunday, August 19, 2007
We want to thank those of you who have taken time to leave us a message on our guestbook or sent us an e-mail. We truly to appreciate all of the caring you are showing our family. We have had people asking for an address to send cards for Taylor, so for those of you who are interested, here is an address for you to send them:
P.O. Box 2023
Stafford, VA 22555
She is scheduled to be in the hospital for 5-7 days if there are no complications. Last time she was in for a solid 7. Taylor is a bit nervous, but we are trying our best to calm her fears. The things she worries about the most is the pain. I wish that was all we needed to worry about, but that's definitely enough for a 5 year old. Kevin and I would do anything in the world if we could just take this on ourselves. She doesn't deserve to be going through all of this!
We'll post updates when we are able. Thank you from the bottom of our hearts!
P.O. Box 2023
Stafford, VA 22555
She is scheduled to be in the hospital for 5-7 days if there are no complications. Last time she was in for a solid 7. Taylor is a bit nervous, but we are trying our best to calm her fears. The things she worries about the most is the pain. I wish that was all we needed to worry about, but that's definitely enough for a 5 year old. Kevin and I would do anything in the world if we could just take this on ourselves. She doesn't deserve to be going through all of this!
We'll post updates when we are able. Thank you from the bottom of our hearts!
Saturday, August 18, 2007
Kevin and I are sad to inform you that Taylor will have to undergo another surgery on her spinal cord this Tuesday, August 21st. We were not going to post anything until after it had taken place, but some of you have already seen messages on our guestbook referring to that fact. We knew additional surgery was a certainty, however we did not know that it would come up this quickly. We found out on Wednesday of this week, which was quite a shock to us. Of course, we want and need to do what is best for Taylor, and that means giving her this chance. I will give all of you a quick review of Taylor's situation, so you will understand where we are right now. One year after Erin and Jade were separated, we found out that Taylor had a tumor on her spinal cord called a Lipoma. It is a benign tumor that is not growing, but it is causing her spinal cord to be tethered. Normally, your spinal cord floats freely at the bottom; there is nothing holding it down. In Taylor's case, her cord is being held down in the base of her spine by the tumor. Every time she grows, her cord is being stretched tighter and tighter, which causes problems with her bladder/bowel and right leg. If nothing is done, she would eventually be paralyzed from the waist down. In July of 2005 Taylor had her first surgery to remove as much of the tumor as possible and untether her spinal cord. Taylor has one of the most complicated types of tethering: her nerve roots are completely enmeshed with the tumor, so the surgeon had a very difficult time removing the tumor, and he was actually only able to extract 60-65% of it. In most of us, our bodies use scar tissue to help in the healing process; however, scar tissue is an enemy to Taylor. Unfortunately, after her first surgery, the scar tissue grabbed hold of her spinal cord again almost immediately, and it has been a frightening waiting game and balancing act in determining the correct timing of her next surgery. She has been showing some symptoms of going downhill for many months, and after seeing the neurosurgeon on Monday of last week, he decided that surgery needed to happen fairly quickly. After discussing it and giving the O.k. on Tuesday, we received word on Wednesday that she needs to have the surgery this coming Tuesday. Wow, we truly felt like we had been hit by a truck (again). We definitely don't want Taylor to lose any more function in her legs or bladder/bowel. Any function she loses will most likely never return. Now, the scary part is that the surgery itself could cause her to lose function and it could also cause her to be paralyzed from the waist down (not to mention all of the other frightening possibilities that come with any surgery). We are just trying to stay positive, and we know that we are doing the best thing for Taylor.
Sorry if this message isn't completely coherent. We have had a very busy and stressful week, and we are just trying to prepare for a very, very long day on Tuesday. Her initial surgery lasted longer than Jade and Erin's separation surgery, and each additional surgery to the same area is far more complicated and delicate.
Thank you for your thoughts, prayers and encouragement. We truly appreciate it. We will update as soon as we are able to let you know how everything is going. You may want to check the guestbook for a short update, as it may be easier to post on there as opposed to logging on to our site.
Thank you again for checking in on us.
Sorry if this message isn't completely coherent. We have had a very busy and stressful week, and we are just trying to prepare for a very, very long day on Tuesday. Her initial surgery lasted longer than Jade and Erin's separation surgery, and each additional surgery to the same area is far more complicated and delicate.
Thank you for your thoughts, prayers and encouragement. We truly appreciate it. We will update as soon as we are able to let you know how everything is going. You may want to check the guestbook for a short update, as it may be easier to post on there as opposed to logging on to our site.
Thank you again for checking in on us.
Saturday, August 11, 2007
We had another busy day today, so I'll try to take a few minutes now to tell you a little more about our trip.
One of the most wonderful aspects of our trip was that we were able to spend time with my brother, Bruce. We haven't seen him for two years (since Jade and Erin's baptism), which has been heartbreaking for me. It was such a blessing and a relief to spend an entire afternoon with him, especially since he has never had a chance to get to know Erin and Jade. He and Taylor used to be very close, and she remembers him well. He came out to my parents' house and spent almost the entire time with the girls, taking them exploring around the yard. Then he and our other brother Mike took the girls out fishing on the paddle boat. I will definitely have to post pictures from that day -- very, very special!
It seemed that everyone wanted us to go visit them while we were in MN. We had far too many people and not enough days to get it all in, which was hard. I wanted to see them all! We were able to see my college roommate and her family. We also went and spent the day with the Deyo family. Nicholas, now 2, has the same spinal cord injury that Erin has. He had his stroke in utero, but the injury is at the exact same level as Erin's. Even though they had just moved to a new city (and state for that matter), they were gracious enough to host our little visit. All of our girls were absolutely thrilled to play with their children, and we were able to spend the afternoon in their swimming pool. While I wish neither Erin nor Nick had to even be in a wheelchair, I think it was great for them to be able to spend time together in their chairs. They finally each had someone they could relate to. Erin always gets excited when she sees another person in a wheelchair, but even more so when it is someone her size (even though Nick is actually bigger than her!). Oh, and Taylor fell in love with their dogs, Tucker and Truman. Can you see the trend here? Anyway, thank you Tanya and Todd for a wonderful day! You can learn more about Nick and his family at http://www.caringbridge.org/visit/nicholasdeyo Oh, many more pictures to post from that day as well.
On the way home from the Deyo's house, Taylor began complaining of a sore throat. I thought maybe she was dehydrated from our day outside in the pool, so I just made sure she drank a lot of water. However, she continued to tell me her throat hurt, and by the time we got home, she had a fever. Ugghhhhh! By the next morning, Taylor had a very runny nose and a cough. By the next day, Erin was complaining that both ears were hurting. So, off we went again to the urgent care facility, only to find out that Erin had an infection in both ears at that point. Taylor just had a cold, but Erin's went one step further. We got a prescription for a stronger antibiotic, and we just prayed that it would do it's job before we left. We were 5 days away from leaving. Taylor and Erin were both coughing and sounded very congested, but it didn't really slow them down (thankfully).
After warning everyone else that we had sick children, we were still able to visit with a few brave souls. We even had the amazing opportunity to spend a couple of days with the Fitterer family. This special family also has a set of formerly conjoined twins, who were born one year ago on August 8th, 2006. Happy Birthday Abygail and Madysen!!! They drove 6 hours with their three children to see us. Wow, you guys deserve an award! We all fell in love with Abby, Maddy, and Nick (who is just one month younger than Erin and Jade). Nick and Jade ended up "getting married" on Sunday before we left! It was so cute! Anyway, unbeknownst to me, Suzy Fitterer had been working on a fundraiser for us, to help raise money so we can modify our house to make it accessible for Erin. With everything she has going on right now in her life, she spent a great deal of time making phone calls, sending out e-mails, and probably countless other tasks in order to help us. Wow, we don't even know how to begin to thank them! Stacy and Suzy, from the bottom of our hearts, thank you! My parents' church ended up holding the benefit on Sunday before we left. Kevin and I had put together a DVD of pictures, video and music to share our journey with others. I showed that and received a tremendous response. They were able to raise just over $3,000 for our modification project, which is amazing. Our goal amount is pretty overwhelming, but what has been raised so far will pay for a ramp to be installed. It's a great start! Thank you to everyone at FUMC for keeping us in your thoughts and prayers for the past 3 1/2 years. Thank you for giving so generously to our family so that we can provide Erin with a ramp to get in and out of our house. Thank you to the Oasis group for going through all of the work to set up the benefit. There is just no way to express our gratitude! We also want to thank Suzy and Stacy's families for donating to our cause. With everything that all of you have dealt with in the past year, it humbles us to receive your gifts. You can check up on the Fitterer family at http://www.caringbridge.org/visit/abygailandmadysenfitterer
All in all, we had a fantastic time in MN (again). It means so much to be able to spend time with family. Thank you Mom and Dad for EVERYTHING! There are just no words.... We love you with all of our hearts!
Oh, on the way home, Taylor was the one who cried on the plane because her ears hurt. Erin did her best to console her, being the seasoned veteran of ear pain. She assured Taylor that once we were home, she would make her ears feel all better. So sweet!
I'm sure I have so many more things to tell you about, but I absolutely can't think of them right now. Of course, that could be because it is 11:50 p.m. and I am exhausted!
I will post a few more pictures tomorrow.
Thanks again for thinking of our family and stopping in to see how we are doing.
One of the most wonderful aspects of our trip was that we were able to spend time with my brother, Bruce. We haven't seen him for two years (since Jade and Erin's baptism), which has been heartbreaking for me. It was such a blessing and a relief to spend an entire afternoon with him, especially since he has never had a chance to get to know Erin and Jade. He and Taylor used to be very close, and she remembers him well. He came out to my parents' house and spent almost the entire time with the girls, taking them exploring around the yard. Then he and our other brother Mike took the girls out fishing on the paddle boat. I will definitely have to post pictures from that day -- very, very special!
It seemed that everyone wanted us to go visit them while we were in MN. We had far too many people and not enough days to get it all in, which was hard. I wanted to see them all! We were able to see my college roommate and her family. We also went and spent the day with the Deyo family. Nicholas, now 2, has the same spinal cord injury that Erin has. He had his stroke in utero, but the injury is at the exact same level as Erin's. Even though they had just moved to a new city (and state for that matter), they were gracious enough to host our little visit. All of our girls were absolutely thrilled to play with their children, and we were able to spend the afternoon in their swimming pool. While I wish neither Erin nor Nick had to even be in a wheelchair, I think it was great for them to be able to spend time together in their chairs. They finally each had someone they could relate to. Erin always gets excited when she sees another person in a wheelchair, but even more so when it is someone her size (even though Nick is actually bigger than her!). Oh, and Taylor fell in love with their dogs, Tucker and Truman. Can you see the trend here?
Anyway, thank you Tanya and Todd for a wonderful day! You can learn more about Nick and his family at http://www.caringbridge.org/visit/nicholasdeyo Oh, many more pictures to post from that day as well.On the way home from the Deyo's house, Taylor began complaining of a sore throat. I thought maybe she was dehydrated from our day outside in the pool, so I just made sure she drank a lot of water. However, she continued to tell me her throat hurt, and by the time we got home, she had a fever. Ugghhhhh! By the next morning, Taylor had a very runny nose and a cough. By the next day, Erin was complaining that both ears were hurting. So, off we went again to the urgent care facility, only to find out that Erin had an infection in both ears at that point. Taylor just had a cold, but Erin's went one step further. We got a prescription for a stronger antibiotic, and we just prayed that it would do it's job before we left. We were 5 days away from leaving. Taylor and Erin were both coughing and sounded very congested, but it didn't really slow them down (thankfully).
After warning everyone else that we had sick children, we were still able to visit with a few brave souls. We even had the amazing opportunity to spend a couple of days with the Fitterer family. This special family also has a set of formerly conjoined twins, who were born one year ago on August 8th, 2006. Happy Birthday Abygail and Madysen!!! They drove 6 hours with their three children to see us. Wow, you guys deserve an award! We all fell in love with Abby, Maddy, and Nick (who is just one month younger than Erin and Jade). Nick and Jade ended up "getting married" on Sunday before we left! It was so cute! Anyway, unbeknownst to me, Suzy Fitterer had been working on a fundraiser for us, to help raise money so we can modify our house to make it accessible for Erin. With everything she has going on right now in her life, she spent a great deal of time making phone calls, sending out e-mails, and probably countless other tasks in order to help us. Wow, we don't even know how to begin to thank them! Stacy and Suzy, from the bottom of our hearts, thank you! My parents' church ended up holding the benefit on Sunday before we left. Kevin and I had put together a DVD of pictures, video and music to share our journey with others. I showed that and received a tremendous response. They were able to raise just over $3,000 for our modification project, which is amazing. Our goal amount is pretty overwhelming, but what has been raised so far will pay for a ramp to be installed. It's a great start! Thank you to everyone at FUMC for keeping us in your thoughts and prayers for the past 3 1/2 years. Thank you for giving so generously to our family so that we can provide Erin with a ramp to get in and out of our house. Thank you to the Oasis group for going through all of the work to set up the benefit. There is just no way to express our gratitude! We also want to thank Suzy and Stacy's families for donating to our cause. With everything that all of you have dealt with in the past year, it humbles us to receive your gifts. You can check up on the Fitterer family at http://www.caringbridge.org/visit/abygailandmadysenfitterer
All in all, we had a fantastic time in MN (again). It means so much to be able to spend time with family. Thank you Mom and Dad for EVERYTHING! There are just no words.... We love you with all of our hearts!
Oh, on the way home, Taylor was the one who cried on the plane because her ears hurt. Erin did her best to console her, being the seasoned veteran of ear pain. She assured Taylor that once we were home, she would make her ears feel all better. So sweet!
I'm sure I have so many more things to tell you about, but I absolutely can't think of them right now. Of course, that could be because it is 11:50 p.m. and I am exhausted!
I will post a few more pictures tomorrow.Thanks again for thinking of our family and stopping in to see how we are doing.
Friday, August 10, 2007 #2
Wow, I can finally sit down..... O.k., grab your bowl of popcorn and get ready to read!
We left for Minnesota on Monday, July 16th. As we were descending in the plane, Erin began crying because her ears hurt. A few days earlier she had a stuffy nose, but it wasn't bad. Once we landed, she was fine, and while I continued to ask her that evening, she said her ears didn't hurt anymore. On Tuesday afternoon, Erin started complaining that her right ear hurt again, and she spiked a fever. To make a long story short, I found an urgent care facility that I could take her to, and they told us that she had an ear infection. This is actually the first trip we've been on where we've had to visit a doctor, so I felt pretty lucky, especially since it was for something as simple as an ear infection; it could have been much worse. Even though most ear infections are viral, I did ask for a prescription of antibiotics for her, because we were leaving on Thursday to go to a cabin in northern MN for a week. She seemed to get better after starting the antibiotics.
The cabin we rented was only five miles from my aunt and uncle's cabin. They held our family reunion the weekend we were there, so we had the opportunity to spend a lot of time with our extended family. Everyone had a wonderful time! I played in our famous Bocce Ball Tournament, with my cousin Greg as my partner. We did extremely well and made it into the semi-final round. I'm pretty sure it was his skill that got us there! Anyway, we didn't win but had a great time none-the-less. Thanks Greg!! The girls had so much fun playing with their cousins, jumping on the trampoline, swimming, and playing with the dogs that were there. Of course, that only increased their desires to get our own dog. While I would love to have a dog, our schedule just wouldn't allow it right now. Hopefully someday!
After the family reunion, we hung out at our rented cabin for the remainder of the week. We spent our days swimming in the lake, catching frogs, and picking flowers. We didn't have a phone there, and there was no cell service. Wow, how many of you have been in a place like that lately?! It was so relaxing, and we were able to spend time with my parents, my sister DeeDee, and my nephew Christian. I have so many pictures from that week, I couldn't possibly load them all, but I did put some up on the site.
After returning from the cabin on Wednesday, July 25th, we took a couple of days to hang out at my parents' house and run some errands. On Friday, we went into my hometown to participate in their Hometown Pride Days. After trying to find our own turtle, to no avail, we were able to borrow a turtle for the exciting Turtle Races! All of the girls had two turns to race the turtle, but they didn't win. Of course, they had so much fun participating that it didn't matter to them whether they won or not. I took many pictures and video of that as well. They each received a t-shirt, a cookie and a juice pouch, which made them feel like winners in the end. My sister, ever the trooper, was the designated turtle holder, as the girls didn't really want to hold it. They each touched the turtle, and that was enough for them. Taylor said that next year she would hold the turtle. We'll see! We did many other things in town, and on Saturday we went back so the girls could play some games and we went to a craft fair. We met this wonderful woman who puts adorable collars and cuffs on jean jackets. My mom bought one for each of the girls, although she didn't have Taylor's there with her. She ended up driving out to my parents' house the next week to deliver the jacket. Thank you so much Shelly! It was an honor to meet you, and we adore the jackets.
I will tell you about one last thing tonight, and then I need to go to bed. My parents have chipmunks that hang out in front of their house. My dad feeds them sunflower seeds, and the girls love to do the same. Last year they would see how close they could get before the chipmunks ran away. This year, Taylor came in one day and said she was petting the chipmunk, but I honestly didn't believe her. I thought she was telling us about what she wanted to do. However, a little while later I looked out the front door to see Taylor PETTING THE CHIPMUNK! It was so funny! All of the girls had their pictures taken petting the chipmunks, which I will also post later, and even I was able to pet the little things. The girls named all of them, although I couldn't tell them apart, but Taylor, Erin and Jade probably could. There was also a gopher that came to eat the seeds, but we couldn't get near it. They named the gopher "Goldie".
O.k., I have so much more to write about but no energy to do it. I promise to write more about our trip tomorrow. Thank you again for checking in on our family. Your thoughts and prayers mean so much to us! Have a wonderful weekend!!
We left for Minnesota on Monday, July 16th. As we were descending in the plane, Erin began crying because her ears hurt. A few days earlier she had a stuffy nose, but it wasn't bad. Once we landed, she was fine, and while I continued to ask her that evening, she said her ears didn't hurt anymore. On Tuesday afternoon, Erin started complaining that her right ear hurt again, and she spiked a fever. To make a long story short, I found an urgent care facility that I could take her to, and they told us that she had an ear infection. This is actually the first trip we've been on where we've had to visit a doctor, so I felt pretty lucky, especially since it was for something as simple as an ear infection; it could have been much worse. Even though most ear infections are viral, I did ask for a prescription of antibiotics for her, because we were leaving on Thursday to go to a cabin in northern MN for a week. She seemed to get better after starting the antibiotics.
The cabin we rented was only five miles from my aunt and uncle's cabin. They held our family reunion the weekend we were there, so we had the opportunity to spend a lot of time with our extended family. Everyone had a wonderful time! I played in our famous Bocce Ball Tournament, with my cousin Greg as my partner. We did extremely well and made it into the semi-final round. I'm pretty sure it was his skill that got us there! Anyway, we didn't win but had a great time none-the-less. Thanks Greg!! The girls had so much fun playing with their cousins, jumping on the trampoline, swimming, and playing with the dogs that were there. Of course, that only increased their desires to get our own dog. While I would love to have a dog, our schedule just wouldn't allow it right now. Hopefully someday!
After the family reunion, we hung out at our rented cabin for the remainder of the week. We spent our days swimming in the lake, catching frogs, and picking flowers. We didn't have a phone there, and there was no cell service. Wow, how many of you have been in a place like that lately?! It was so relaxing, and we were able to spend time with my parents, my sister DeeDee, and my nephew Christian. I have so many pictures from that week, I couldn't possibly load them all, but I did put some up on the site.
After returning from the cabin on Wednesday, July 25th, we took a couple of days to hang out at my parents' house and run some errands. On Friday, we went into my hometown to participate in their Hometown Pride Days. After trying to find our own turtle, to no avail, we were able to borrow a turtle for the exciting Turtle Races! All of the girls had two turns to race the turtle, but they didn't win. Of course, they had so much fun participating that it didn't matter to them whether they won or not. I took many pictures and video of that as well. They each received a t-shirt, a cookie and a juice pouch, which made them feel like winners in the end. My sister, ever the trooper, was the designated turtle holder, as the girls didn't really want to hold it. They each touched the turtle, and that was enough for them. Taylor said that next year she would hold the turtle. We'll see! We did many other things in town, and on Saturday we went back so the girls could play some games and we went to a craft fair. We met this wonderful woman who puts adorable collars and cuffs on jean jackets. My mom bought one for each of the girls, although she didn't have Taylor's there with her. She ended up driving out to my parents' house the next week to deliver the jacket. Thank you so much Shelly! It was an honor to meet you, and we adore the jackets.
I will tell you about one last thing tonight, and then I need to go to bed. My parents have chipmunks that hang out in front of their house. My dad feeds them sunflower seeds, and the girls love to do the same. Last year they would see how close they could get before the chipmunks ran away. This year, Taylor came in one day and said she was petting the chipmunk, but I honestly didn't believe her. I thought she was telling us about what she wanted to do. However, a little while later I looked out the front door to see Taylor PETTING THE CHIPMUNK! It was so funny! All of the girls had their pictures taken petting the chipmunks, which I will also post later, and even I was able to pet the little things. The girls named all of them, although I couldn't tell them apart, but Taylor, Erin and Jade probably could. There was also a gopher that came to eat the seeds, but we couldn't get near it. They named the gopher "Goldie".
O.k., I have so much more to write about but no energy to do it. I promise to write more about our trip tomorrow. Thank you again for checking in on our family. Your thoughts and prayers mean so much to us! Have a wonderful weekend!!
Friday, August 10, 2007
Well, the wait is almost over! Of course, because it has been so long since our last update, you may be reading a novel before I'm done! We went to MN for three weeks to visit family and friends, and I had very little access to a computer. Thank you for being so patient and for continuing to check up on us. I will also be posting pictures either today or tomorrow; however, I literally have over 1,000 pictures to go through and choose from, so you'll have to be patient once again.
We returned from our trip late Monday evening. We had to go to Baltimore to Kennedy Krieger on Tuesday, therapy on Wednesday, and we had appointments yesterday to get Taylor and Erin fitted for new braces (Taylor's leg) and a new TLSO (body jacket for Erin). Today is our day "off", but it is also the only day I have this week to unpack, wash clothes, clean up the mess we made after coming home, oh, and of course take care of our children! I may have to post updates in short stories, instead of one big book, but I will try to grab some time this afternoon to start.
Thanks for waiting!
We returned from our trip late Monday evening. We had to go to Baltimore to Kennedy Krieger on Tuesday, therapy on Wednesday, and we had appointments yesterday to get Taylor and Erin fitted for new braces (Taylor's leg) and a new TLSO (body jacket for Erin). Today is our day "off", but it is also the only day I have this week to unpack, wash clothes, clean up the mess we made after coming home, oh, and of course take care of our children! I may have to post updates in short stories, instead of one big book, but I will try to grab some time this afternoon to start.
Thanks for waiting!
Sunday, July 15, 2007
First of all, we want to wish our nephew, Christian, a very Happy Birthday!! Wow, we can't believe you're 15 already! We're so proud of the wonderful young man you turned out to be!
We have been doing well around here. I have to apologize for my last entry. It doesn't happen often anymore, but I do have days where I feel terribly sad for Erin's circumstances. We do know that she will have a wonderful life and she will do something very special, but sometimes the things that she can't do are so blatantly obvious, and when it bothers her, it makes it more difficult for us to stay positive. While she rarely sees our sadness, it is there none-the-less.
Erin received a piece of equipment called a Dynamic Stander to demo, and she absolutely LOVES it. As soon as we put her in it, she began twirling and "dancing" around our foyer (the only place in our house where she can roll). She had the biggest smile on her face the entire time! I took some great pictures and cute videos that I will try to put up on the site. Her sisters wanted to roll around with her as well, so Jade jumped in Erin's wheelchair and Taylor grabbed her bike. Erin usually hates it if her sisters try to use her wheelchair, but since she had other "wheels", she didn't mind.
We went to Children's Hospital on Friday to have some tests done on Erin and Taylor. They both had to undergo studies of their bladders called Urodynamics. Erin went first, because we knew it wouldn't bother her to be catheterized. Taylor was traumatized 2 years ago when she had to be catheterized after her surgery on her spinal cord. She has had 2 years to really build up that fear and make it much worse than it really is. We found out that Erin's bladder hasn't grown like it should, which is pretty common for people with spinal cord injuries. For a child her age, she is supposed to be able to hold about 150 cc's of urine in her bladder. Erin could only hold about 75 cc's. We will most likely need to put her on a medication called Ditropan and start catheterizing her regularly. I think I have been resisting it in my mind, only because it's like admitting that the disability has affected far more than her trunk and legs. Most people truly don't understand what it means to have a spinal cord injury -- it is much more than just the fact that your legs don't work. Anyway, our hope is that she will someday regain control of her bladder and bowel, along with her legs of course.
Taylor went 2nd, and she went into panic mode as soon as she was on the table. Now, Kevin and I had been talking to her for days about it, and we thought she had calmed down; however, that built-up fear was just too much for her. I held her hand and talked to her through the entire ordeal, but I don't know if it helped. She admittedly felt no pain, because we had numbed the area ahead of time, it was just the idea of it. After the catheter was placed, she was fine, which was a relief! Unfortunately, Taylor's test results were even worse than Erin's. A child Taylor's age should be able to hold 250 cc's in her bladder, but she started having bladder contractions with just 35 cc's in there. She was able to hold it in through many more contractions (which are very abnormal) until there was just over 70 cc's. Wow, we knew she was having issues with her bladder, but that was worse than we thought. We have really been avoiding catheterizing with Taylor, especially since she is so scared of it, but we may not be able to avoid it any longer. I'm still hoping that she can go on the medication to see if that helps first.
We hope you all had a wonderful weekend. The show about Erin and Jade's separation surgery is on again today at 5 p.m. EST on the Discovery Health Channel. Thank you to the many who sent e-mails and posted messages of encouragement after my last entry. We are so blessed to have people who care about our family. Have a fantastic week!
We have been doing well around here. I have to apologize for my last entry. It doesn't happen often anymore, but I do have days where I feel terribly sad for Erin's circumstances. We do know that she will have a wonderful life and she will do something very special, but sometimes the things that she can't do are so blatantly obvious, and when it bothers her, it makes it more difficult for us to stay positive. While she rarely sees our sadness, it is there none-the-less.
Erin received a piece of equipment called a Dynamic Stander to demo, and she absolutely LOVES it. As soon as we put her in it, she began twirling and "dancing" around our foyer (the only place in our house where she can roll). She had the biggest smile on her face the entire time! I took some great pictures and cute videos that I will try to put up on the site. Her sisters wanted to roll around with her as well, so Jade jumped in Erin's wheelchair and Taylor grabbed her bike. Erin usually hates it if her sisters try to use her wheelchair, but since she had other "wheels", she didn't mind.
We went to Children's Hospital on Friday to have some tests done on Erin and Taylor. They both had to undergo studies of their bladders called Urodynamics. Erin went first, because we knew it wouldn't bother her to be catheterized. Taylor was traumatized 2 years ago when she had to be catheterized after her surgery on her spinal cord. She has had 2 years to really build up that fear and make it much worse than it really is. We found out that Erin's bladder hasn't grown like it should, which is pretty common for people with spinal cord injuries. For a child her age, she is supposed to be able to hold about 150 cc's of urine in her bladder. Erin could only hold about 75 cc's. We will most likely need to put her on a medication called Ditropan and start catheterizing her regularly. I think I have been resisting it in my mind, only because it's like admitting that the disability has affected far more than her trunk and legs. Most people truly don't understand what it means to have a spinal cord injury -- it is much more than just the fact that your legs don't work. Anyway, our hope is that she will someday regain control of her bladder and bowel, along with her legs of course.
Taylor went 2nd, and she went into panic mode as soon as she was on the table. Now, Kevin and I had been talking to her for days about it, and we thought she had calmed down; however, that built-up fear was just too much for her. I held her hand and talked to her through the entire ordeal, but I don't know if it helped. She admittedly felt no pain, because we had numbed the area ahead of time, it was just the idea of it. After the catheter was placed, she was fine, which was a relief! Unfortunately, Taylor's test results were even worse than Erin's. A child Taylor's age should be able to hold 250 cc's in her bladder, but she started having bladder contractions with just 35 cc's in there. She was able to hold it in through many more contractions (which are very abnormal) until there was just over 70 cc's. Wow, we knew she was having issues with her bladder, but that was worse than we thought. We have really been avoiding catheterizing with Taylor, especially since she is so scared of it, but we may not be able to avoid it any longer. I'm still hoping that she can go on the medication to see if that helps first.
We hope you all had a wonderful weekend. The show about Erin and Jade's separation surgery is on again today at 5 p.m. EST on the Discovery Health Channel. Thank you to the many who sent e-mails and posted messages of encouragement after my last entry. We are so blessed to have people who care about our family. Have a fantastic week!
Tuesday, July 10, 2007
Wow, things have hit me pretty hard the past two days. Erin doesn't usually complain about ANYTHING, but she does say things sometimes that hit us directly in the heart. Yesterday, as I was getting her ready for bed, Erin said, "Mommy, I don't need to wear a diaper, do I?" When I told her that she does, she became very sad and kept insisting that she doesn't need to wear them. How do you explain to a 3 year old that she will most likely always need to wear diapers? She had tears in her eyes as we talked about it. I had to hold back my tears and try to stay cheerful to make it seem like it wasn't a big deal. Today, she was riding her FES bike and watching Taylor and Jade run around chasing each other. She announced, very sadly, that she wishes she could do everything that her sisters can do. Oh my goodness, please Lord let me trade places with her! We would give anything in this world for her to be able to do what her sisters can do. It's like a prison sentence, and the wheelchair is like her cell. She can't get out, no matter how good she is or how hard she works.
Sorry, some days are harder than others. Please don't misunderstand me; I am ALWAYS thankful to have them in our lives, and I know that it is an absolute miracle that they both survived. We know how blessed we are each and every day! It's just tough sometimes as we watch Erin struggle to do things that are no problem to her sisters. We hate to see her, or any of our children, sad.
I just had to get that out. I'm sure tomorrow will be a much better day. We are getting another piece of equipment to try out, and I'm sure Erin will love it. It is just like the wheeled stander that she used at Kennedy Krieger. You can see the pictures in the June 2007 batch. Hopefully insurance will cover it so she can have one here.
Oh, on a positive note, Erin has been riding her new FES (Functional Electrical Stimulation) bike every day. She does extremely well, and she rides 4.2 miles each day. Go Erin! This will help to strengthen the muscles in her legs, gives her a cardiovascular workout, and hopefully is sending some signals that are getting through to her brain saying this is how they are supposed to work.
Have a wonderful week!
Sorry, some days are harder than others. Please don't misunderstand me; I am ALWAYS thankful to have them in our lives, and I know that it is an absolute miracle that they both survived. We know how blessed we are each and every day! It's just tough sometimes as we watch Erin struggle to do things that are no problem to her sisters. We hate to see her, or any of our children, sad.
I just had to get that out. I'm sure tomorrow will be a much better day. We are getting another piece of equipment to try out, and I'm sure Erin will love it. It is just like the wheeled stander that she used at Kennedy Krieger. You can see the pictures in the June 2007 batch. Hopefully insurance will cover it so she can have one here.
Oh, on a positive note, Erin has been riding her new FES (Functional Electrical Stimulation) bike every day. She does extremely well, and she rides 4.2 miles each day. Go Erin! This will help to strengthen the muscles in her legs, gives her a cardiovascular workout, and hopefully is sending some signals that are getting through to her brain saying this is how they are supposed to work.
Have a wonderful week!
Monday, July 9, 2007 (Continued)
I forgot to say that the television special about Erin and Jade is on tonight at 8 and 11 p.m. (EST) on the Discovery Health Channel. It will also be on Sunday, July 15 at 5 p.m.
Have a great evening!
Monday, July 9, 2007
Hello everyone! We hope you are all doing well! We're just doing our best to stay cool here -- the heat index for today is 105 degrees. Isn't that lovely?! I can't even take the girls to the pool, because they could still easily get dehydrated, especially Erin. That's o.k., we went to the pool on Friday, and it was absolutely packed. Erin didn't even want to swim, because all of the kids kept running by her splashing water in her face. It was a tough day.
Kevin and I celebrated our anniversary. Happy Anniversary, my love!! He has been my rock, my best friend, my soulmate and true love, and I am truly blessed to have him for my husband. Thank you, Kevin, for being there for me through the joy and the sorrow. After everything we have been through over the past 3 years, we have really been concentrating on our relationship during these last few months. I feel like we are closer now than we've ever been. I'm just so thankful!
We have been getting estimates to have our house modified to make it accessible for Erin. It's an absolutely monumental task, and I'm not sure how it will be possible, but we definitely need to try. We are looking into trying to get some grants and we'll see about some possible fundraisers. We want to thank our wonderful friend Carol for putting in the hours upon hours of work to find some assistance for us. Carol has truly gone above and beyond what anyone would ever consider asking of her. Thank you Carol!!!
We have a busy week of therapy ahead, but I will try to post new pictures soon. I have some great pics from the 4th of July to share.
Again, thank you for taking the time to check in on our family!
Sunday, July 1, 2007
We had another fun day today. I took the girls to the pool, and we all had a fantastic time. They just absolutely love to play in the water. Taylor is becoming a good little swimmer (that's my girl!). Every time I took Erin out of the water, she would start kicking her legs. I'm not sure if it was voluntary or not, but it sure was cool to see.
Kevin built a platform today for Erin's chair she will need to sit on while she rides her FES bike. We are just waiting for the chair to arrive, and then Erin can ride at home. We're sooooo excited!!
I finally posted new pictures today. You will see Erin doing her OT and PT. There are a few pictures where she and her sisters are playing hide and seek (her favorite game), and I think you will enjoy their hiding spots! I also wanted to share some pictures from Kevin's birthday. Erin and I decided to surprise him, and we went to see him at his performance at the Iwo Jima Memorial. He is so handsome!!! Anyway, I want to thank all of those involved for helping to make the surprise possible, and for surprising us with special parking and special seating. It was a wonderful evening! You will also see Erin with her new friend Alex and one of our heroes: Jimmy. Alex and his family are very involved with advocating for spinal cord/stem cell research. You can see a video they made for President Bush before the last vote on the Stem Cell Research Enhancement Act, which he vetoed, of course. Check it out at Youtube: Hope for Alex
We hope you have a wonderful week. Please stay safe! Thank you for caring so much about us.
Kevin built a platform today for Erin's chair she will need to sit on while she rides her FES bike. We are just waiting for the chair to arrive, and then Erin can ride at home. We're sooooo excited!!
I finally posted new pictures today. You will see Erin doing her OT and PT. There are a few pictures where she and her sisters are playing hide and seek (her favorite game), and I think you will enjoy their hiding spots! I also wanted to share some pictures from Kevin's birthday. Erin and I decided to surprise him, and we went to see him at his performance at the Iwo Jima Memorial. He is so handsome!!! Anyway, I want to thank all of those involved for helping to make the surprise possible, and for surprising us with special parking and special seating. It was a wonderful evening! You will also see Erin with her new friend Alex and one of our heroes: Jimmy. Alex and his family are very involved with advocating for spinal cord/stem cell research. You can see a video they made for President Bush before the last vote on the Stem Cell Research Enhancement Act, which he vetoed, of course. Check it out at Youtube: Hope for Alex
We hope you have a wonderful week. Please stay safe! Thank you for caring so much about us.
Saturday, June 30, 2007 (Continued)
I will attempt to finish this now, before it gets too late.
Erin's sessions with her physical therapist seemed too good to be true. She had a great deal of muscle activity in her legs. Of course, I say that with nothing for you to compare it to. Keep in mind that last year at this time Erin's legs had no muscle activity. They were just floppy. Now she has tone in her legs and you can feel her muscles kick in once in awhile as we are walking her. Over this past two weeks, she would move her legs while she was sitting in her chair and especially when she wakes up in the morning. She is nowhere near the point where she could crawl or walk, but just seeing some activity is extremely exciting to us. On Friday, which was our last day, Erin walked for 30 minutes on the Hydrotrack (underwater treadmill). Amy, her PT, became very excited and said that Erin was taking steps on her own. Amy was just supporting her legs underneath her hamstrings, and she said Erin took about 10 steps all by herself!!! It's still difficult to even believe it is true, and I was standing right there. Are you sure??? I can't quite wrap my mind around it....
All in all, this stay was fantastic!! We met some wonderful people, and we were able to see some of our other dear friends. We were blessed to meet the Pitts family, who also has a set of twins, one with a spinal cord injury and the other who does not. Alex and Ryan are 6 years old and absolutely adorable. Erin, who has never before played with other children (not including her sisters), had a wonderful time wheeling up and down the hallways with the boys. They played "Red Light, Green Light", they raced, and they chased each other. It brought tears to my eyes to see Erin having so much fun and feeling so comfortable. She has never had the opportunity to play with another child in a wheelchair. We were also able to spend time with Jimmy, the man who is a complete inspiration to our family. Jimmy, who is categorized as a quadriplegic, was walking this week with just a cane!!! Jimmy, you are amazing and you give us so much hope!!! At the Ronald McDonald House we had a number of dinners with Darrin and his family. We have known Darrin since we started going to KKI in Sept/Oct. He is doing fantastic things as well, and we are so excited for him and his fabulous progress. Way to go Darrin!! Erin talked about Darrin, but she wouldn't talk to him. There was one day where she gave in and spoke to him, which was very cute. He gave Erin two beanie babies, which she now carries on the back of her chair.
Thank you again to the Ronald McDonald House for providing us and many other families a safe and comfortable place to stay. Thank you to the many people who come in to serve dinner to all of us. You just have no idea how much it means to us!!
I want to say a huge thank you to the Under Armour company. They are continuing to work with us to create little shirts for Erin for underneath her TLSO (body brace). Some of the reps from the company came over to the RMH to see us again, and they brought shirts, not only for Erin, but for the entire family. Wow!!! This company is outstanding, and they are not just this wonderful to us. At least twice a month a group from within the Under Armour Company goes into the Ronald McDonald House to provide dinner for the families. They make it fun for everyone, often decorating and providing activities for the children.
Tomorrow I will post new pictures -- I have many. You will be able to see what we have all been up to.
I want to take a moment to wish my husband a very happy birthday. Thank you for being my best friend, a wonderful husband and a fantastic father. I love you!!! Happy Birthday (last week)!!
Erin's sessions with her physical therapist seemed too good to be true. She had a great deal of muscle activity in her legs. Of course, I say that with nothing for you to compare it to. Keep in mind that last year at this time Erin's legs had no muscle activity. They were just floppy. Now she has tone in her legs and you can feel her muscles kick in once in awhile as we are walking her. Over this past two weeks, she would move her legs while she was sitting in her chair and especially when she wakes up in the morning. She is nowhere near the point where she could crawl or walk, but just seeing some activity is extremely exciting to us. On Friday, which was our last day, Erin walked for 30 minutes on the Hydrotrack (underwater treadmill). Amy, her PT, became very excited and said that Erin was taking steps on her own. Amy was just supporting her legs underneath her hamstrings, and she said Erin took about 10 steps all by herself!!! It's still difficult to even believe it is true, and I was standing right there. Are you sure??? I can't quite wrap my mind around it....
All in all, this stay was fantastic!! We met some wonderful people, and we were able to see some of our other dear friends. We were blessed to meet the Pitts family, who also has a set of twins, one with a spinal cord injury and the other who does not. Alex and Ryan are 6 years old and absolutely adorable. Erin, who has never before played with other children (not including her sisters), had a wonderful time wheeling up and down the hallways with the boys. They played "Red Light, Green Light", they raced, and they chased each other. It brought tears to my eyes to see Erin having so much fun and feeling so comfortable. She has never had the opportunity to play with another child in a wheelchair. We were also able to spend time with Jimmy, the man who is a complete inspiration to our family. Jimmy, who is categorized as a quadriplegic, was walking this week with just a cane!!! Jimmy, you are amazing and you give us so much hope!!! At the Ronald McDonald House we had a number of dinners with Darrin and his family. We have known Darrin since we started going to KKI in Sept/Oct. He is doing fantastic things as well, and we are so excited for him and his fabulous progress. Way to go Darrin!! Erin talked about Darrin, but she wouldn't talk to him. There was one day where she gave in and spoke to him, which was very cute. He gave Erin two beanie babies, which she now carries on the back of her chair.
Thank you again to the Ronald McDonald House for providing us and many other families a safe and comfortable place to stay. Thank you to the many people who come in to serve dinner to all of us. You just have no idea how much it means to us!!
I want to say a huge thank you to the Under Armour company. They are continuing to work with us to create little shirts for Erin for underneath her TLSO (body brace). Some of the reps from the company came over to the RMH to see us again, and they brought shirts, not only for Erin, but for the entire family. Wow!!! This company is outstanding, and they are not just this wonderful to us. At least twice a month a group from within the Under Armour Company goes into the Ronald McDonald House to provide dinner for the families. They make it fun for everyone, often decorating and providing activities for the children.
Tomorrow I will post new pictures -- I have many. You will be able to see what we have all been up to.
I want to take a moment to wish my husband a very happy birthday. Thank you for being my best friend, a wonderful husband and a fantastic father. I love you!!! Happy Birthday (last week)!!
Saturday, June 30, 2007
I'm sorry once again for the lengthy absence. I did warn you that we would be busy, and it turned out to be far busier than even I expected. On June 18th, Erin and I left for Baltimore to spend another two weeks at the International Center for Spinal Cord Injury at Kennedy Krieger Institute. Because the Ronald McDonald House is extremely busy during the summer, we were only able to get a small room for our stay, and it would have been very difficult to fit 5 of us into the room. Thankfully, Kevin's mom agreed to stay at our house for an additional two weeks to care for Taylor and Jade. Kevin had to work every day, and he couldn't take the girls with him. I definitely missed having everyone with me, but we are so grateful to Jean Jean for making the sacrifice. Taylor and Jade were thrilled to have their grandmother with them every day, and it was a wonderful opportunity for all of them to spend some quality time together. I think Erin enjoyed having some one on one time with mommy as well. She seemed to blossom a bit while we were gone, and she actually spoke to more people while at KKI. She's still very shy, but she did much better this time around.
Erin amazed us once again with the improvements she was able to make. She has fantastic therapists, who work extremely hard to keep her sessions fun while she works to the point of exhaustion. We want to thank Miss Amy and Miss Becca for everything they do for Erin! You ladies are Heaven-sent! We also want to thank everyone else at Kennedy Krieger who we came in contact with. Each time we are there, we are treated so well and couldn't be happier with everyone who works at this amazing place. Anyway, back to Erin.... During this stay, Erin walked on the treadmill while suspended in the harness, she walked in her RGO's, she did a lot of kneeling and standing (with assistance), she walked on the Hydrotrack (underwater treadmill), and she was FINALLY big enough to use the FES bike. FES stands for Functional Electrical Stimulation. Basically, there is a stationary bike with a very sophisticated computer hooked up to it. Electrodes are placed on Erin's quads, hamstrings, and glutes (front and back of thigh and her butt). The electrodes are hooked into the computer and the computer sends electrical signals to Erin's muscles in the correct order for her to pedal the bike. The computer can measure the amount of force Erin's legs are able to generate to turn the pedals, and, if need be, the motor will kick in to help with the rotation. If Erin voluntarily helps push the pedals, the computer will detect it. The computer on the bike is wirelessly linked to the internet, and it sends all information about her workouts to RTI (company who makes the bike), to KKI and to us so we can all monitor her progress. The most amazing thing of all is that this company, Restorative Therapies Inc., has donated a bike to us. I was absolutely brought to tears by their extremely generous donation, because we never would have been able to afford this bike! Thank you so much to Judy, Scott, and everyone else at this fantastic company!! Please check out their website to learn more about their bikes: http://www.restorative-therapies.com
O.k., back to Erin's therapy. In OT, Erin worked on being able to dress and undress herself. She has always had problems with her balance while sitting, because she has no muscle function from armpit level down. Through all of her hard work, Erin can now sit for short periods of time without having to prop herself up using her arms. She can take off some of her shirts (nothing that is tight), and she can take off her pants/shorts. She does need a tiny bit of assistance during the process, but for the most part she can do it herself. Becca also worked with her on being in a high kneeling position and reaching for things and transferring them from one hand to the other. It's all about balance. She has gained a great deal of strength in her trunk, and she has some muscles in her back and her abdomen that are working now.
Well, for those of you reading this tonight, you will have to wait a bit longer for the rest of the update. I need to get the girls to bed, but I will try to complete this before tomorrow.
Erin amazed us once again with the improvements she was able to make. She has fantastic therapists, who work extremely hard to keep her sessions fun while she works to the point of exhaustion. We want to thank Miss Amy and Miss Becca for everything they do for Erin! You ladies are Heaven-sent! We also want to thank everyone else at Kennedy Krieger who we came in contact with. Each time we are there, we are treated so well and couldn't be happier with everyone who works at this amazing place. Anyway, back to Erin.... During this stay, Erin walked on the treadmill while suspended in the harness, she walked in her RGO's, she did a lot of kneeling and standing (with assistance), she walked on the Hydrotrack (underwater treadmill), and she was FINALLY big enough to use the FES bike. FES stands for Functional Electrical Stimulation. Basically, there is a stationary bike with a very sophisticated computer hooked up to it. Electrodes are placed on Erin's quads, hamstrings, and glutes (front and back of thigh and her butt). The electrodes are hooked into the computer and the computer sends electrical signals to Erin's muscles in the correct order for her to pedal the bike. The computer can measure the amount of force Erin's legs are able to generate to turn the pedals, and, if need be, the motor will kick in to help with the rotation. If Erin voluntarily helps push the pedals, the computer will detect it. The computer on the bike is wirelessly linked to the internet, and it sends all information about her workouts to RTI (company who makes the bike), to KKI and to us so we can all monitor her progress. The most amazing thing of all is that this company, Restorative Therapies Inc., has donated a bike to us. I was absolutely brought to tears by their extremely generous donation, because we never would have been able to afford this bike! Thank you so much to Judy, Scott, and everyone else at this fantastic company!! Please check out their website to learn more about their bikes: http://www.restorative-therapies.com
O.k., back to Erin's therapy. In OT, Erin worked on being able to dress and undress herself. She has always had problems with her balance while sitting, because she has no muscle function from armpit level down. Through all of her hard work, Erin can now sit for short periods of time without having to prop herself up using her arms. She can take off some of her shirts (nothing that is tight), and she can take off her pants/shorts. She does need a tiny bit of assistance during the process, but for the most part she can do it herself. Becca also worked with her on being in a high kneeling position and reaching for things and transferring them from one hand to the other. It's all about balance. She has gained a great deal of strength in her trunk, and she has some muscles in her back and her abdomen that are working now.
Well, for those of you reading this tonight, you will have to wait a bit longer for the rest of the update. I need to get the girls to bed, but I will try to complete this before tomorrow.
Sunday, June 17, 2007
I would like to wish my husband and my dad a very Happy Father's Day!!! To Kevin, my soulmate and best friend, thank you for being such a wonderful husband and father. You bring so much happiness into our lives, and we could never thank you enough for all that you are and all that you do. You are the man of my dreams and my knight in shining armour! Our children could not have a better father, and that means the world to me. I love you more than there are stars in the sky! We all love you dearly!
To my dad, thank you for being the best father that I could ever ask for. You are a blessing in my life, and I want to thank you for being there for me in the good times and the bad. Happy Father's Day, Dad! I love you!
Happy Father's Day to all of the great fathers out there who work so hard to be the best that they can be.
Taylor and Jade have been recovering well. They are both back to eating, and they seem to be feeling much better. We are absolutely thankful for that! We spent a wonderful weekend with Kevin's family, celebrating Derek's graduation. I will try to post pictures soon. We have an extremely busy week, so I apologize if it doesn't happen until next weekend.
Have a fantastic week!
To my dad, thank you for being the best father that I could ever ask for. You are a blessing in my life, and I want to thank you for being there for me in the good times and the bad. Happy Father's Day, Dad! I love you!
Happy Father's Day to all of the great fathers out there who work so hard to be the best that they can be.
Taylor and Jade have been recovering well. They are both back to eating, and they seem to be feeling much better. We are absolutely thankful for that! We spent a wonderful weekend with Kevin's family, celebrating Derek's graduation. I will try to post pictures soon. We have an extremely busy week, so I apologize if it doesn't happen until next weekend.
Have a fantastic week!
Thursday, June 14, 2007
I just wanted to post an update to let you know how everyone is doing. Many of you have asked about my father -- thank you for that. He is finally home and doing much, much better! He went home on Tuesday afternoon, and he has lost 20 lbs in 2 days! It was all fluid that had built up from the IV.
Erin has completely recovered from this crazy virus, but Taylor and Jade are still having a pretty tough time. Taylor's only issue is that she won't eat, but Jade still has diarrhea. Poor thing! We are supposed to be at my nephew's graduation tonight, but Jade and I stayed here to try to recover.
Congratulations Derek! He is graduating from high school, and we are all so very proud of him. His family lived in New Orleans before Hurricane Katrina, and they had to relocate to the city in which we live. They have had to go through so much in the past 2 years, and he has amazed us all with his strength and perseverance. Way to go Derek! We love you!
We had another long week with sick kids and trying to go to therapy, but Erin did a fabulous job once again. She has been working so hard, without complaint, and it brings tears to my eyes when I see her determination.
The kids have all been excited, because their grandma Jean Jean and aunt Connie are in town for the graduation. It is so wonderful to have them here, and we wish they could stay longer.
I need to say thank you to a wonderful woman named Carol (again) for all of her hard work to help our family. Thank you so much Carol! You are Heaven-sent!
Thank you to everyone for checking on our family. It means so much to us!
Erin has completely recovered from this crazy virus, but Taylor and Jade are still having a pretty tough time. Taylor's only issue is that she won't eat, but Jade still has diarrhea. Poor thing! We are supposed to be at my nephew's graduation tonight, but Jade and I stayed here to try to recover.
Congratulations Derek! He is graduating from high school, and we are all so very proud of him. His family lived in New Orleans before Hurricane Katrina, and they had to relocate to the city in which we live. They have had to go through so much in the past 2 years, and he has amazed us all with his strength and perseverance. Way to go Derek! We love you!
We had another long week with sick kids and trying to go to therapy, but Erin did a fabulous job once again. She has been working so hard, without complaint, and it brings tears to my eyes when I see her determination.
The kids have all been excited, because their grandma Jean Jean and aunt Connie are in town for the graduation. It is so wonderful to have them here, and we wish they could stay longer.
I need to say thank you to a wonderful woman named Carol (again) for all of her hard work to help our family. Thank you so much Carol! You are Heaven-sent!
Thank you to everyone for checking on our family. It means so much to us!
Monday, June 11, 2007
After last week, we were hoping for a nice, relaxing weekend; however, the virus that has taken over our girls had something else in mind. All three girls had diarrhea, a fever, and didn't have much interest in eating or drinking. In fact, Erin was so dehydrated and lethargic on Saturday that we almost took her to the Emergency Room (once again). After waking up in the morning, all she wanted to do was lie on the floor all day. She just kept falling asleep, and we couldn't get her to even drink very much. We were pretty worried. After speaking to her pediatrician (thank goodness for Dr. Labow) we decided to try some of his suggestions, and she seemed to turn the corner. After eating half of a banana, Erin perked up a little bit, and she even ate some dinner. While all the girls still have the diarrhea today, Erin and Jade, at least, are in better moods. Poor Taylor was the quiet one today, and she hasn't eaten more than 2 bites of anything, but at least she is drinking. I hope they get rid of this virus soon -- it sure is taking it's toll on everyone!
I took Erin to therapy today, while Kevin stayed home with Taylor and Jade. Erin did a fantastic job walking in her RGO's! She is getting so much stronger, and she is able to swing her legs forward mostly by herself. It's really difficult, and the adults that I've spoken to about using RGO's say it's very hard work and they are exhausted when they are done. Erin has gotten to the point where she is not very excited to go to therapy every day, because she knows how hard she is going to have to work. We are so proud of her, though, for doing everything that we and the therapists ask of her without much complaint. I get tired of going to therapy every day, and I'm just the driver and cheerleader!! Way to go Erin! We promise that it will all be worth it in the end. Honestly, last year at this time, Erin literally had very, very little movement below the level of injury. We now see a great deal of movement in her legs, and it amazes us each and every time we see it. Now, don't misinterpret what I said. While she does have movement, she is nowhere near the point where she could crawl, stand or walk, but just the fact that there is movement now where there wasn't any before is extremely exciting to us. We definitely celebrate the little things in our house!
Well, my dad is supposed to be discharged from the hospital tomorrow. He is still not eating more than one or two bites at each meal, and I don't think everything is working perfectly yet, but apparently they feel he is well enough to go home. He actually gained 26 lbs. in a few days time, while not being able to eat or drink anything! That's crazy! It's all fluid retention from the I.V. How miserable! I hope he's much more comfortable at home and he starts to lose some of that.
Thank you again for checking in on our family. I will keep you posted on our little girlies. Have a great week!
I took Erin to therapy today, while Kevin stayed home with Taylor and Jade. Erin did a fantastic job walking in her RGO's! She is getting so much stronger, and she is able to swing her legs forward mostly by herself. It's really difficult, and the adults that I've spoken to about using RGO's say it's very hard work and they are exhausted when they are done. Erin has gotten to the point where she is not very excited to go to therapy every day, because she knows how hard she is going to have to work. We are so proud of her, though, for doing everything that we and the therapists ask of her without much complaint. I get tired of going to therapy every day, and I'm just the driver and cheerleader!! Way to go Erin! We promise that it will all be worth it in the end. Honestly, last year at this time, Erin literally had very, very little movement below the level of injury. We now see a great deal of movement in her legs, and it amazes us each and every time we see it. Now, don't misinterpret what I said. While she does have movement, she is nowhere near the point where she could crawl, stand or walk, but just the fact that there is movement now where there wasn't any before is extremely exciting to us. We definitely celebrate the little things in our house!
Well, my dad is supposed to be discharged from the hospital tomorrow. He is still not eating more than one or two bites at each meal, and I don't think everything is working perfectly yet, but apparently they feel he is well enough to go home. He actually gained 26 lbs. in a few days time, while not being able to eat or drink anything! That's crazy! It's all fluid retention from the I.V. How miserable! I hope he's much more comfortable at home and he starts to lose some of that.
Thank you again for checking in on our family. I will keep you posted on our little girlies. Have a great week!
Friday, June 8, 2007
Oh, it's been a long week here in the Buckles household. We spent all day on Monday at Children's Hospital in D.C. Erin and Taylor had some scans, called a DMSA, on their kidneys to check for scarring. Anytime they have a urinary tract infection with a high fever, they will need to have a DMSA done. Since Erin had one in late December and Taylor in late January (Taylor's temp. got up to 105 numerous times), the Urologist decided they both needed to have the scan. Normally they sedate young kids for the test, because they need to stay completely still. I convinced the scheduler that neither of my girls needed sedation. When we arrived at the hospital, the technician who does the scans thought I had lost my mind. He asked me at least 7 or 8 times if I was sure they did not need to be sedated. After assuring him that I knew my children well, he went ahead with the test. To do the DMSA, they inject the girls with a radioactive substance that accumulates in their kidneys. After the injection, we have to wait about 1 1/2 hours before they can do the scan. The girls have to lie on a special table, completely still, while the machine does it's work. Taylor went first and absolutely amazed the man by holding still. He was still very hesitant about Erin, because she is only 3 years old. I'm not sure how many different ways I could have told him that it would be fine. They wrap the kids up in velcro straps, so it would be difficult to move to begin with. We were all able to be in the same room together, so I read books to the girls during the tests. Now, they did have to repeat one segment of the test with Erin because she moved, but I won't complain because she was moving her legs!! I know he didn't understand why I wasn't upset, but that's o.k. He was actually excited that she did so well and only moved the one time. He said every other child her age would have to be sedated. Now, while I'm sure that's not the case, I know it probably makes their job easier. Anyway, the great news is that neither Taylor nor Erin has any scarring in their kidneys. Jade was able to spend the day with her daddy on Monday. He had to be at work that day, so to make things a little easier on me, he took Jade with him. She was so excited and felt like such a big girl. She was able to eat breakfast and lunch with him in the chow hall, and she sat and had a conversation with the Colonel of the base while Kevin was in a meeting. How cute!
After returning home on Monday, I took Erin's temperature. She felt a little warm to me during her DMSA scan, but they had her all wrapped up, so I thought she might just be overheated (very common for her). She also wasn't the same happy little girl that she usually is, but since we were around a lot of people that day, and she is very shy, I just attributed her quietness to that. Anyway, when we got home and she still felt warm, I took her temperature. It was 102.4! Aaahhh! I wish I would have said something while we were there! I immediately called and left a message for her Urologist and sent him an e-mail (sometimes they check one more frequently than the other). We heard back from him later that evening saying she needed to have a urine culture done the next day. On Tuesday, after many phone calls back and forth, they decided we should come in to the ER. Definitely not my favorite place! Now, you know we got some funny looks when describing why we were there, "Ummmm, my daughter has a slight fever....." Of course, we explained the situation, but initially they must have thought we were just some hysterical parents. I need to say a huge thank you to Miss Nadia and Miss Terry from the Volunteer Services office for helping us to get through there faster and for taking care of Taylor and Jade until Kevin could get to the hospital. You are both Heaven-sent! I don't know what we would do without you EVERY time we are there. We all love you dearly! Anyway, we got home at 7:30 p.m. on Tuesday. Fun!
I need to go off on a little tangent for a minute. While we were at the hospital on Monday, a woman was trying to speak to Erin. As I stated earlier, Erin is extremely shy and she very rarely speaks to strangers. This woman asked, right in front of Erin, if Erin was the "mean" one. I was appalled, but I have to say that it was not even the first time it happened. I've had other people ask me the exact same question while Erin is sitting right there. Erin is a very smart little girl, and she knows what that means, so if anything, those people are making it much, much worse! Why would an adult ask such a question, ever, but especially in front of the child? I wish everyone could see Erin at home. She is non-stop smiles and she talks more than anyone else in the house. Anyway, I was just upset that someone would say such a thing, and she works in a children's hospital. Are kids ever really excited or even comfortable when they are in the hospital for tests or procedures?
Anyway, Erin's urine culture and blood tests came back negative (normal), so the docs said it must be viral. Sure enough, on Wednesday Erin got diarrhea and then Taylor got it on Thursday (along with the fever). Taylor still has the fever today, so we are just taking it easy and trying to relax.
For those of you who have asked about my dad, we got some fantastic news on Wednesday. There was no cancer found in the section of colon they removed!! Amazing! The surgeon was sure it would be cancerous, because the polyps were so big. Anyway, what a huge relief. However, my dad is still miserable. His intestines are still not working, and it has been 8 days since the surgery. He can't go home, because he is extremely uncomfortable, and the docs need to make sure everything is working before they discharge him. He was only supposed to be in the hospital for 3-5 days. I wish I could do something for him. I'll let you know as soon as he starts to improve.
Thank you again for checking on our family. We appreciate your love and support!
After returning home on Monday, I took Erin's temperature. She felt a little warm to me during her DMSA scan, but they had her all wrapped up, so I thought she might just be overheated (very common for her). She also wasn't the same happy little girl that she usually is, but since we were around a lot of people that day, and she is very shy, I just attributed her quietness to that. Anyway, when we got home and she still felt warm, I took her temperature. It was 102.4! Aaahhh! I wish I would have said something while we were there! I immediately called and left a message for her Urologist and sent him an e-mail (sometimes they check one more frequently than the other). We heard back from him later that evening saying she needed to have a urine culture done the next day. On Tuesday, after many phone calls back and forth, they decided we should come in to the ER. Definitely not my favorite place! Now, you know we got some funny looks when describing why we were there, "Ummmm, my daughter has a slight fever....." Of course, we explained the situation, but initially they must have thought we were just some hysterical parents. I need to say a huge thank you to Miss Nadia and Miss Terry from the Volunteer Services office for helping us to get through there faster and for taking care of Taylor and Jade until Kevin could get to the hospital. You are both Heaven-sent! I don't know what we would do without you EVERY time we are there. We all love you dearly! Anyway, we got home at 7:30 p.m. on Tuesday. Fun!
I need to go off on a little tangent for a minute. While we were at the hospital on Monday, a woman was trying to speak to Erin. As I stated earlier, Erin is extremely shy and she very rarely speaks to strangers. This woman asked, right in front of Erin, if Erin was the "mean" one. I was appalled, but I have to say that it was not even the first time it happened. I've had other people ask me the exact same question while Erin is sitting right there. Erin is a very smart little girl, and she knows what that means, so if anything, those people are making it much, much worse! Why would an adult ask such a question, ever, but especially in front of the child? I wish everyone could see Erin at home. She is non-stop smiles and she talks more than anyone else in the house. Anyway, I was just upset that someone would say such a thing, and she works in a children's hospital. Are kids ever really excited or even comfortable when they are in the hospital for tests or procedures?
Anyway, Erin's urine culture and blood tests came back negative (normal), so the docs said it must be viral. Sure enough, on Wednesday Erin got diarrhea and then Taylor got it on Thursday (along with the fever). Taylor still has the fever today, so we are just taking it easy and trying to relax.
For those of you who have asked about my dad, we got some fantastic news on Wednesday. There was no cancer found in the section of colon they removed!! Amazing! The surgeon was sure it would be cancerous, because the polyps were so big. Anyway, what a huge relief. However, my dad is still miserable. His intestines are still not working, and it has been 8 days since the surgery. He can't go home, because he is extremely uncomfortable, and the docs need to make sure everything is working before they discharge him. He was only supposed to be in the hospital for 3-5 days. I wish I could do something for him. I'll let you know as soon as he starts to improve.
Thank you again for checking on our family. We appreciate your love and support!
Saturday, June 2, 2007
Sorry for not updating sooner. My dad's surgery went very well. They had to take about 7 inches of his colon, but they believe they got everything. The surgeon checked his liver and other organs and said they all look great. On initial inspection, the surgeon actually thought the masses in my dad's colon did not look like they were malignant (cancerous). They were sent down to pathology, of course, for more intense testing. I'll let you all know when we find out the results. He'll be in the hospital for 3-5 days, but he seems to be in very good spirits.
The girls and I went to the pool again today. Taylor cannot get enough of the water! I am able to protect Erin's feet by putting Jade's old water shoes on her, and I figured out that I can protect her knees by cutting off the tops of old socks and pulling them up over her knees. Thank you to those of you who e-mailed or signed our guestbook with suggestions. I really appreciate the time you took out of your day to do that. Anyway, Jade normally hates to get her face wet at all, but she and I went underwater together. I don't think she has forgiven me yet!! :0) She was fine, and she continued to play, but she kept reminding me that she didn't want to go underwater. Erin, after watching me with Jade, immediately made sure I knew that she did NOT want to go underwater. She has said that she will put her nose in the water during her bath tonight.
Thank you for checking on us, once again! We are truly grateful for all of the wonderful people who care about our family!
The girls and I went to the pool again today. Taylor cannot get enough of the water! I am able to protect Erin's feet by putting Jade's old water shoes on her, and I figured out that I can protect her knees by cutting off the tops of old socks and pulling them up over her knees. Thank you to those of you who e-mailed or signed our guestbook with suggestions. I really appreciate the time you took out of your day to do that. Anyway, Jade normally hates to get her face wet at all, but she and I went underwater together. I don't think she has forgiven me yet!! :0) She was fine, and she continued to play, but she kept reminding me that she didn't want to go underwater. Erin, after watching me with Jade, immediately made sure I knew that she did NOT want to go underwater. She has said that she will put her nose in the water during her bath tonight.
Thank you for checking on us, once again! We are truly grateful for all of the wonderful people who care about our family!
Friday, June 1, 2007
Please keep my dad in your thoughts and prayers this afternoon as he undergoes surgery on his colon. It was discovered that he has some masses in his colon that are most likely cancerous.
Monday, May 28, 2007
I hope everyone spent at least a little time today thinking about our troops, past and present, who have given their lives to ensure the freedoms we enjoy in this country. I cannot even fathom what the families go through when they are told their loved one has been killed -- the pain would be unimaginable. While I think we need to get our troops home, I am so proud of all of the service men and women for being willing to sacrifice so much to serve our country. I am honored to be married to a man who is a Marine through and through.
I decided to take the girls to the pool this weekend. We went both Saturday and Sunday, and I was just amazed at how comfortable the girls were in the water. They haven't really been in a pool since last August, but it seemed like it was just last week. Taylor is a little fish, and I'm pretty sure she spends more time underwater than on top! That's my girl!! Jade is much more comfortable this year -- she will walk into the water until it is up to her chest without any fear at all. Now, she still won't get her face wet, but I'm working on it. Erin loves to play in the shallow water. The pool has a zero depth entry, so you can wade in. Erin crawls around in the water that is between 6 inches to a foot deep. What is amazing to see is how much her legs move while she is in the water. I think it is a combination of not having to work as hard to move in the water and the fact that she gets a lot of sensory input into her knees and feet from the bottom of the pool. As she pulls herself along, Erin will actually move her legs as if she is trying to crawl. When she wants to sit up, she'll push her upper body upright and her legs will come up into the "W" sitting position. I know her therapists wouldn't be happy about that in the long run, as it is very bad for her hips and knees, but it is wonderful to see her moving her legs in that way. Of course, the major down side to all of the crawling is the fact that she now has big scrapes on her toes, ankles and knees. It didn't happen on Saturday, but Sunday was the day she really began moving her legs more. I will have to find something to protect her legs and feet while we're in the pool. I know I can get her some water shoes, but I don't know what to do about her knees. If anyone has any ideas, I would really appreciate it. On Sunday the girls decided they wanted to go into the big pool, so I had them take turns while the others sat on the side. They all loved swimming with me in the deep water, and Taylor especially thrived. She began swimming farther and farther, and I definitely had visions of a champion swimmer in my head! Last year she had a difficult time floating on her back (because she was scared), but on Sunday she listened to everything I told her, and in no time at all she was floating. She could have stayed there all day, but I finally had to pick her up -- because it was Erin's turn! They all make sure that they get their turns! :0) I wish I could take them to the pool everyday. It's actually one of the best types of therapy for both Erin and Taylor.
I want to take a moment to thank the wonderful ladies at the Target pharmacy for everything you do for our family. You have all been fantastic, and we appreciate that you care so much about our children.
I also wanted to tell anyone who is interested that Erin and Jade's show will be airing again tomorrow (Tuesday, May 29) on the Discovery Health channel at 9 p.m. EST and again at 12 a.m. (for those of you who like to stay up late). I think it is also going to be showing on Saturday, June 2nd at 1 p.m. I always have people asking me when it is going to be on, so I thought I would post it here. The one hour program is called "Conjoined Twins: Erin and Jade".
We hope you all have a wonderful week. I will try to post some new photos soon. Thank you for taking the time to check on us.
I decided to take the girls to the pool this weekend. We went both Saturday and Sunday, and I was just amazed at how comfortable the girls were in the water. They haven't really been in a pool since last August, but it seemed like it was just last week. Taylor is a little fish, and I'm pretty sure she spends more time underwater than on top! That's my girl!! Jade is much more comfortable this year -- she will walk into the water until it is up to her chest without any fear at all. Now, she still won't get her face wet, but I'm working on it. Erin loves to play in the shallow water. The pool has a zero depth entry, so you can wade in. Erin crawls around in the water that is between 6 inches to a foot deep. What is amazing to see is how much her legs move while she is in the water. I think it is a combination of not having to work as hard to move in the water and the fact that she gets a lot of sensory input into her knees and feet from the bottom of the pool. As she pulls herself along, Erin will actually move her legs as if she is trying to crawl. When she wants to sit up, she'll push her upper body upright and her legs will come up into the "W" sitting position. I know her therapists wouldn't be happy about that in the long run, as it is very bad for her hips and knees, but it is wonderful to see her moving her legs in that way. Of course, the major down side to all of the crawling is the fact that she now has big scrapes on her toes, ankles and knees. It didn't happen on Saturday, but Sunday was the day she really began moving her legs more. I will have to find something to protect her legs and feet while we're in the pool. I know I can get her some water shoes, but I don't know what to do about her knees. If anyone has any ideas, I would really appreciate it. On Sunday the girls decided they wanted to go into the big pool, so I had them take turns while the others sat on the side. They all loved swimming with me in the deep water, and Taylor especially thrived. She began swimming farther and farther, and I definitely had visions of a champion swimmer in my head! Last year she had a difficult time floating on her back (because she was scared), but on Sunday she listened to everything I told her, and in no time at all she was floating. She could have stayed there all day, but I finally had to pick her up -- because it was Erin's turn! They all make sure that they get their turns! :0) I wish I could take them to the pool everyday. It's actually one of the best types of therapy for both Erin and Taylor.
I want to take a moment to thank the wonderful ladies at the Target pharmacy for everything you do for our family. You have all been fantastic, and we appreciate that you care so much about our children.
I also wanted to tell anyone who is interested that Erin and Jade's show will be airing again tomorrow (Tuesday, May 29) on the Discovery Health channel at 9 p.m. EST and again at 12 a.m. (for those of you who like to stay up late). I think it is also going to be showing on Saturday, June 2nd at 1 p.m. I always have people asking me when it is going to be on, so I thought I would post it here. The one hour program is called "Conjoined Twins: Erin and Jade".
We hope you all have a wonderful week. I will try to post some new photos soon. Thank you for taking the time to check on us.
Friday, May 25, 2007 (Continued)
Sorry about that. I had a very small window of opportunity to go to the grocery store today, so I had to cut the update short. I will finish it now while I have a few minutes.
I was going to explain about the Spina Bifida clinic, but first let me say that neither Erin nor Taylor have Spina Bifida. We take them to that clinic because all of the doctors that they need to see are also part of the Spina Bifida clinic. The premise of the clinic is that, instead of families having to make four different appointments to see all of their doctors, which could literally take place over several months, we just go to the Spina Bifida clinic where all of our doctors come to see us. After checking in, we are put into a room to wait. One by one, each doctor comes in to see us. Now, while it is a fabulous idea, it does make for a REALLY long day; however, we still prefer the clinic over trying to set up separate appointments. We absolutely love most of our doctors (I guess it would be too much to say we love all of our doctors), and the girls just adore them. The Urologist decided that both Taylor and Erin need a series of tests on their bladders and kidneys, because as they grow things can change, and they both had urinary tract infections with high fevers within the past few months. All of these tests have names that tell nothing about them: DMSA, VCUG, and UroDynamics. The latter involves a catheter, which will be extremely traumatizing to Taylor. Just the word itself sends a look of fear across her face. I wonder if she could be sedated for that one? Poor thing!
The next doctor to come in to see the girls was their Orthopaedist. She thought Erin looked great, but she was a bit concerned about Taylor's foot. It seems that no matter what we do, her muscles and tendons in her right leg/foot just keep getting worse. If you look at her ankle, you cannot even see any part of her heel cord (achilles tendon). Because of this tremendous atrophy, Taylor has an extremely difficult time pointing her toe (plantar flexion), which makes walking or running quite hard. She has no push-off when she steps. If it gets much worse, Taylor will need to have surgery. During the operation, her surgeon will take tendons from the front of her foot and mesh them in with her heel cord to try to restore some function. We will continue to work hard with therapy and e-stim to try to prevent yet another surgery, but it almost seems inevitable. We're definitely not giving up, though!
The next, and last, doctor that day to come in (one of the docs wasn't there - nice) was their neurosurgeon, Dr. Keating. Again, he was very happy with how Erin is doing and gave her an A for the day. He was happy with Taylor's current status, but he knows that could quickly change. Since her spinal cord is re-tethered, she could go downhill at any moment, but she could also hang in there and never have any symptoms. With her, it is a waiting game, and we are ever vigilant about minor issues that could be signaling something much bigger. There is nothing that can be done right now surgically, because the surgery itself to untether her cord carries enormous risk of causing Taylor to lose function from her waist down. So, we have to actually wait until she does begin to lose function before the surgery can be performed. Of course, any function that she does lose before or during surgery will most likely never return, so that is why we are so watchful each day. We can't necessarily prevent it, but we can try to catch it early to limit the amount of function she does lose.
The best part of our day at Children's was getting to see all of our friends in the Volunteer Services office and especially another amazing family we have been blessed to know in our journey. We were able to spend some time with the Shaw family, whose twin boys Mateo and McHale were separated at Children's last fall. They are in town for check-ups and a few procedures, and it was great to see them!
Well, enough about medical stuff.... We are all doing pretty well. Other than allergies, we are all really healthy. We truly enjoy spending as much time as possible outside, especially now that it is nice enough to get our little plastic pool out (for the girls at least!). We are just going to try to relax this weekend. Since gas is so expensive, we are going to hang out at home and play outside.
We hope everyone has a safe and relaxing Memorial Day weekend. Please remember all of our troops and veterans as you go about your daily lives and be thankful for all that you have.
I was going to explain about the Spina Bifida clinic, but first let me say that neither Erin nor Taylor have Spina Bifida. We take them to that clinic because all of the doctors that they need to see are also part of the Spina Bifida clinic. The premise of the clinic is that, instead of families having to make four different appointments to see all of their doctors, which could literally take place over several months, we just go to the Spina Bifida clinic where all of our doctors come to see us. After checking in, we are put into a room to wait. One by one, each doctor comes in to see us. Now, while it is a fabulous idea, it does make for a REALLY long day; however, we still prefer the clinic over trying to set up separate appointments. We absolutely love most of our doctors (I guess it would be too much to say we love all of our doctors), and the girls just adore them. The Urologist decided that both Taylor and Erin need a series of tests on their bladders and kidneys, because as they grow things can change, and they both had urinary tract infections with high fevers within the past few months. All of these tests have names that tell nothing about them: DMSA, VCUG, and UroDynamics. The latter involves a catheter, which will be extremely traumatizing to Taylor. Just the word itself sends a look of fear across her face. I wonder if she could be sedated for that one? Poor thing!
The next doctor to come in to see the girls was their Orthopaedist. She thought Erin looked great, but she was a bit concerned about Taylor's foot. It seems that no matter what we do, her muscles and tendons in her right leg/foot just keep getting worse. If you look at her ankle, you cannot even see any part of her heel cord (achilles tendon). Because of this tremendous atrophy, Taylor has an extremely difficult time pointing her toe (plantar flexion), which makes walking or running quite hard. She has no push-off when she steps. If it gets much worse, Taylor will need to have surgery. During the operation, her surgeon will take tendons from the front of her foot and mesh them in with her heel cord to try to restore some function. We will continue to work hard with therapy and e-stim to try to prevent yet another surgery, but it almost seems inevitable. We're definitely not giving up, though!
The next, and last, doctor that day to come in (one of the docs wasn't there - nice) was their neurosurgeon, Dr. Keating. Again, he was very happy with how Erin is doing and gave her an A for the day. He was happy with Taylor's current status, but he knows that could quickly change. Since her spinal cord is re-tethered, she could go downhill at any moment, but she could also hang in there and never have any symptoms. With her, it is a waiting game, and we are ever vigilant about minor issues that could be signaling something much bigger. There is nothing that can be done right now surgically, because the surgery itself to untether her cord carries enormous risk of causing Taylor to lose function from her waist down. So, we have to actually wait until she does begin to lose function before the surgery can be performed. Of course, any function that she does lose before or during surgery will most likely never return, so that is why we are so watchful each day. We can't necessarily prevent it, but we can try to catch it early to limit the amount of function she does lose.
The best part of our day at Children's was getting to see all of our friends in the Volunteer Services office and especially another amazing family we have been blessed to know in our journey. We were able to spend some time with the Shaw family, whose twin boys Mateo and McHale were separated at Children's last fall. They are in town for check-ups and a few procedures, and it was great to see them!
Well, enough about medical stuff.... We are all doing pretty well. Other than allergies, we are all really healthy. We truly enjoy spending as much time as possible outside, especially now that it is nice enough to get our little plastic pool out (for the girls at least!). We are just going to try to relax this weekend. Since gas is so expensive, we are going to hang out at home and play outside.
We hope everyone has a safe and relaxing Memorial Day weekend. Please remember all of our troops and veterans as you go about your daily lives and be thankful for all that you have.
Friday, May 25, 2007
Wow, I don't know where the time goes! Another two weeks have gone by since I've updated, and it's all been a blur. We have, of course, been going to therapy every day, but we've also had a few other doctor's appointments. On May 15th we had to take Erin and Taylor to Spina Bifida clinic, which is an all-day affair. We had to be there early that morning so Erin could have a renal/bladder ultrasound. This is a test to see how her bladder and kidneys look. The doctors look for any thickening of her bladder walls. If that happens, it tells them that she has high pressure in her bladder, which would ultimately damage her kidneys. Thankfully everything still looks good. Taylor also had to have x-rays done of her right leg and foot. We just wanted to see if her bone structure has been affected by the issues with her spinal cord -- if you look at her leg and foot, it looks far different from the left one. The doctor said that the only thing affected has been her muscles, tendons and ligaments. They have all atrophied so badly that Taylor may have to have surgery to help restore some function. In the meantime, we are working hard on her therapy to try to prevent another surgery. Anyway, after the tests/x-rays in the morning, we had barely enough time to grab a very quick lunch before going to the Spina Bifida clinic. I think I've explained the premise of the clinic before, but I'll give you a quick recap later.
Sunday, May 13, 2007
Happy Mother's Day!!!
We hope all of the wonderful, hardworking mothers out there have a very special day today. We especially want to recognize all of the mothers who have children who are dealing with serious issues. These women have to be just that much stronger and have more courage each and every day.
I am so extremely thankful to be the mom to four very special children. I do not take one single second for granted, and I am absolutely blessed to have them all in my life!!
Kevin and I would like to wish our moms a very Happy Mother's Day! You are both amazing women who have been wonderful examples in our lives. We want to thank both of you for all of the sacrifices you made (and continue to make) on behalf of us. Please know that we love you both dearly and we are thankful each and every day to have you in our lives.
We hope all of the wonderful, hardworking mothers out there have a very special day today. We especially want to recognize all of the mothers who have children who are dealing with serious issues. These women have to be just that much stronger and have more courage each and every day.
I am so extremely thankful to be the mom to four very special children. I do not take one single second for granted, and I am absolutely blessed to have them all in my life!!
Kevin and I would like to wish our moms a very Happy Mother's Day! You are both amazing women who have been wonderful examples in our lives. We want to thank both of you for all of the sacrifices you made (and continue to make) on behalf of us. Please know that we love you both dearly and we are thankful each and every day to have you in our lives.
Thursday, May 10, 2007
First, we would like to wish Mateo and McHale Shaw a very happy 1st birthday!! Born conjoined, these twin boys have defied all odds and are thriving today. Like many formerly conjoined twins, they have a long road ahead of them, but they are alive, which is an absolute miracle in itself. If you would like to check in on them, you can visit their website at www.caringbridge.org/visit/mateoandmchale Happy Birthday boys!! We hope you have a fantastic day!
I also wanted to mention another special family we are blessed to know. The Deyo family has a little boy, Nicholas, who will be two in July. He has the same spinal cord injury that Erin has. We have been able to meet up with them at Kennedy Krieger a couple of times, one of which was our most recent visit. It's been so nice for us to talk to another family who understands what we are going through. We are thankful to know you!! You can look in on Nick at www.caringbridge.org/visit/nicholasdeyo
O.k., so now for our other exciting news from this week. We had the honor and privilege of meeting the Queen of England on Tuesday! It was an amazing, once in a lifetime experience for our family, and we want to thank Children's Hospital for inviting us to be a part of that special day. Taylor was hoping she would wear her crown, but we had to explain that she only wears it for very special occasions. We also had the opportunity to speak to the First Lady, Laura Bush, again (we met her a few years ago at Christmas). She actually remembered us, which was a shock! Anyway, we had a fabulous time, getting to see many of the special people we love at the hospital. I was able to take pictures of our family that day (all dressed up), but I wasn't able to take pictures of the Queen. Children's Hospital has some pictures from the day on their website, and we made it into a couple of them. You can check them out at www.dcchildrens.com Taylor was also allowed to do something special that day. She was chosen to give a gift to the British Ambassador's wife. Taylor walked up to her and did her beautiful curtsy. She said, "It's an honor to meet you, Lady Catherine. I have a gift for you." The gift bag contained a Doctor Bear teddy bear and a scarf. Lady Catherine asked Taylor her name, and then she told Taylor she was going to name her bear "Taylor Bear". Every time she looks at it, she said she would think of Taylor. It was so sweet, and Taylor had the cutest grin on her face. We would like to thank Children's Hospital (and everyone in the Volunteer Services office) again for thinking of us and including us in that very special occasion.
I will post new pictures either tonight or tomorrow. We don't have therapy tomorrow (phew), so we will have a chance to relax. We have been going non-stop for the past 3 weeks, and it will be nice to have a day off. Not that we ever really have a day off, because we do therapy with the girls at home, but at least we don't have to go anywhere.
Thanks for thinking about us! Have a great weekend!
Wednesday, May 9, 2007
Our family has had some amazing experiences over the past few weeks. After meeting the Duchess of York, we spent the following 2 weeks at the International Center for Spinal Cord Injury at Kennedy Krieger Institute in Baltimore, MD. Once again, Erin did a fantastic job and amazed everyone with the things she can do. I actually posted pictures from our first week there, and I have more to post from our second week. Erin was able to stand at a tall bench without her body brace on or any e-stim. She just had the braces on her ankles/feet. Amy, her physical therapist, gave her minimal assistance at her left knee and hip, and Erin was able to keep her right leg straight for much of the time. If she would start to sag, Amy would just remind Erin to stand up tall, and Erin would use her legs to push herself back up. It's pretty difficult to believe, but I saw it with my own eyes!! And I have pictures/video! Again, this does not mean Erin will be walking anytime in the near future, but we do believe it will happen someday. It's pretty difficult to wrap my mind around it, though, when we had been told for so long that Erin would not regain any function below the level of her injury. We definitely have tremendous hope for what is to come.
Another outstanding thing that has happened is that we are working with the wonderful people at the Under Armour company to create some shirts for Erin (and Jade). Right now, Under Armour does not have a line of clothing out for toddlers, but they have the best heat gear out there, with material that wicks away moisture from your skin. Because of Erin's spinal cord injury, her body cannot regulate its temperature, and she is hot all of the time. She has to wear the TLSO (brace on her torso) all day, every day, and it keeps all of the heat in. She perspires excessively, especially in the summer, and the shirts she has now (to wear underneath her brace) keep the moisture right up against her skin. Under Armour has been amazing in their willingness to create shirts for both Erin and Jade, and we could never thank them enough for all of the time and hard work they have put into this project. They even had 4 of the people who are working on this come over to the Ronald McDonald House to meet us last week. It was wonderful to meet them and be able to thank them in person. They took the time to look at the demo shirts they had made to see how they fit the girls. We discussed the modifications that could be made and off they went to work on them some more. Absolutely amazing! Thank you Under Armour! For those of you who do any kind of physical/outdoor activities, check out Under Armour's clothing lines -- I'll bet you will fall in love with them as well.
I have another big piece of news, but it will have to wait until later. I will try to post another update either tonight or tomorrow. Thank you for checking in on us!
Sunday, April 29, 2007
Here is another little update to bring you up to speed on what is happening with Erin. We have been seeing quite a bit of muscle activity in her legs lately, mostly being able to straighten them out and bear some weight for a very short period of time. Many times if we hold her underneath her arms and tell her to "stand up", Erin will straighten her legs on command. In therapy, her therapist (Amy) will help Erin to stand in front of a bench or a table, just holding her at the knees/hips. Erin will stand up really straight, and that's without her TLSO (Thoracic, Lumbar, Sacral Orthosis) on. That's the brace she wears on her abdomen to help her stay upright and to prevent a curvature of her spine. Last year at this time, she was not able to keep herself upright for any amount of time without her brace on. Anyway, while she is standing there, sometimes her knees start to sag, and Amy will tell Erin to stand up again, and Erin will do it. It's almost difficult to believe! It's amazing to see these improvements she is making. While we don't know how far she will go, at least we know we are doing everything we possibly can to help her get there.
Erin also began some aquatic therapy last week. The first day was pretty rough on her, because she hasn't been in a pool for quite awhile. However, the second day was much better, and she was more relaxed in the water. When Amy was able to get her completely relaxed, she asked Erin to move her legs, and she said she felt Erin's glutes and quads firing (butt and front of thighs). In the water, Erin doesn't have to fight against gravity in order to move, so any movement would be much easier. There may be muscles firing outside the water too, but it's too difficult for her to move her legs while fighting gravity. We'll see what happens, but it can only be good.
Thank you for checking in on us! I will do my best to update again soon. Have a great week!
Also, a great big THANK YOU to Carol for sending the girls all of the books! They were absolutely thrilled and couldn't wait to read them! Thank you again for everything!
Erin also began some aquatic therapy last week. The first day was pretty rough on her, because she hasn't been in a pool for quite awhile. However, the second day was much better, and she was more relaxed in the water. When Amy was able to get her completely relaxed, she asked Erin to move her legs, and she said she felt Erin's glutes and quads firing (butt and front of thighs). In the water, Erin doesn't have to fight against gravity in order to move, so any movement would be much easier. There may be muscles firing outside the water too, but it's too difficult for her to move her legs while fighting gravity. We'll see what happens, but it can only be good.
Thank you for checking in on us! I will do my best to update again soon. Have a great week!
Also, a great big THANK YOU to Carol for sending the girls all of the books! They were absolutely thrilled and couldn't wait to read them! Thank you again for everything!
Saturday, April 28, 2007
Well, so much for trying to update more frequently! I have very good intentions, but it never seems to work out like I plan -- I guess if we had more hours in the day I might get everything done! As you can probably guess, we have been keeping ourselves extremely busy, and I haven't even had time to check my e-mail in over a week (sorry to those of you who have sent messages in that time period). I'll do my best to complete this update tonight, otherwise I will post another one tomorrow -- hopefully with pictures.
On Friday, April 20th, we had the honor and privilege of meeting Sarah Ferguson, the Duchess of York. The wonderful people at the Ronald McDonald House in Baltimore invited our family to be guests at a real tea party, where the Duchess and the First Lady of Maryland were the guests of honor. Taylor, Jade and Erin were chosen to greet her at the door and to present her with 3 bouquets of flowers. Taylor was the first to welcome the Duchess to the house -- She did a curtsy and said, "It's an honor to meet you ma'am". After the Duchess handed out "princess bracelets" and little toys to all of the kids, Taylor said, "would you come to our tea party please?". It was so adorable, and Kevin and I were beaming with pride. I captured it all on video, of course! Taylor took her hand and escorted the Duchess back to where a beautiful tea party was set up. The party was just for the children, the Duchess and Mrs. O'Malley (the governor's wife). All of the parents were there, taking pictures, and marveling at what wonderful little ladies and gentlemen our children were being. The Duchess told the kids the story of her wedding day. As she was describing the glass carriage with the six white horses, the beautiful tiara, and the amazing wedding dress with the 50 foot train, and last but not least, the fact that she married a real prince, Taylor's face was the picture of amazement as she imagined the Cinderella-like moment. The Duchess also talked about her daughters, who are real princesses. The girls were very impressed! The day was wonderful, and we are so thankful that we were invited. The real occasion was to announce a new McDonald's charity program in the Baltimore and Washington region. McDonald's has placed a new item - a $1 donation - on the menu. All of the proceeds will go to the Ronald McDonald House Charities in Baltimore. I can't even begin to tell you how many families, including our own, benefit from the Ronald McDonald House, so we want to thank those of you who choose to donate to this special cause. Without the Ronald McDonald House, we would not be able to stay in Baltimore for Erin's intense physical and occupational therapy at the Kennedy Krieger Institute. We have met so many amazing families while staying there, some of whom are still there each time we go back.
I'll try to post another update tomorrow, but if it doesn't happen, it will have to wait until next weekend. I do have some great things to tell you about Erin!
As you can probably guess, we have been keeping ourselves extremely busy, and I haven't even had time to check my e-mail in over a week (sorry to those of you who have sent messages in that time period). I'll do my best to complete this update tonight, otherwise I will post another one tomorrow -- hopefully with pictures.On Friday, April 20th, we had the honor and privilege of meeting Sarah Ferguson, the Duchess of York. The wonderful people at the Ronald McDonald House in Baltimore invited our family to be guests at a real tea party, where the Duchess and the First Lady of Maryland were the guests of honor. Taylor, Jade and Erin were chosen to greet her at the door and to present her with 3 bouquets of flowers. Taylor was the first to welcome the Duchess to the house -- She did a curtsy and said, "It's an honor to meet you ma'am". After the Duchess handed out "princess bracelets" and little toys to all of the kids, Taylor said, "would you come to our tea party please?". It was so adorable, and Kevin and I were beaming with pride. I captured it all on video, of course! Taylor took her hand and escorted the Duchess back to where a beautiful tea party was set up. The party was just for the children, the Duchess and Mrs. O'Malley (the governor's wife). All of the parents were there, taking pictures, and marveling at what wonderful little ladies and gentlemen our children were being. The Duchess told the kids the story of her wedding day. As she was describing the glass carriage with the six white horses, the beautiful tiara, and the amazing wedding dress with the 50 foot train, and last but not least, the fact that she married a real prince, Taylor's face was the picture of amazement as she imagined the Cinderella-like moment. The Duchess also talked about her daughters, who are real princesses. The girls were very impressed! The day was wonderful, and we are so thankful that we were invited. The real occasion was to announce a new McDonald's charity program in the Baltimore and Washington region. McDonald's has placed a new item - a $1 donation - on the menu. All of the proceeds will go to the Ronald McDonald House Charities in Baltimore. I can't even begin to tell you how many families, including our own, benefit from the Ronald McDonald House, so we want to thank those of you who choose to donate to this special cause. Without the Ronald McDonald House, we would not be able to stay in Baltimore for Erin's intense physical and occupational therapy at the Kennedy Krieger Institute. We have met so many amazing families while staying there, some of whom are still there each time we go back.
I'll try to post another update tomorrow, but if it doesn't happen, it will have to wait until next weekend. I do have some great things to tell you about Erin!
Sunday, April 15, 2007
First and foremost, we need to thank a very special woman named Carol, who sent an absolutely wonderful gift to Erin. Carol contacted us awhile ago and asked if Erin had a toy wheelchair and doll to play with. It's something we thought she would enjoy, but we weren't able to get one for her. Carol lovingly volunteered to send one, and Erin received it last week. The look on her face as she opened the box was precious, and her excitement grew as she saw that she now has a doll who is in a wheelchair, just like her. A book was also included that talks about a boy in a wheelchair going to school. Thank you Carol, from the bottom of our hearts!! Erin loves the gifts. It means so much to us that you would think to do this for our daughter!
We've been working really hard with Erin on her therapy at home. She has been having some issues lately, so we decided to take her to the pediatrician on Friday to see if we could figure out the cause. After many, many x-rays, and hours spent driving and waiting, waiting and driving, her pediatrician called me on our 2 1/2 hour drive home to tell me that Erin had (has?) a stress fracture in her left heel. He said that fractures like those can go undetected on the initial x-ray and are only spotted weeks later if there is a follow-up x-ray. So now we know the cause of Erin's ankle swelling and pain while we were at Kennedy Krieger last time. It's actually a relief to have a diagnosis, but it confirms that she does have osteoporosis in her lower extremities and we really need to do something about it soon. We now have to figure out if we can continue her rigorous therapy, or if we need to back off. She's been doing amazingly well, which makes it harder to have a set-back, but we don't want to cause further injury. I'll let you know what we find out.
Jade seems to be coming down with a cold, which only seems to make her more funny. Today her eyes were watering and she looked at me and said, "Mommy, my eyes are melting!" It was so cute! She walked around and told everyone who would listen that she has a cold, and she doesn't feel well. Tonight, as she was getting her pajamas on, she noticed a little red mark, like a bug bite, on her tummy, and she screamed with alarm. Immediately she said, "This is an emergency!" She decided that it must be a spider bite. I'm not sure where that came from, but it was funny.
We have another busy week, but I'll try to update again soon.
Here is Erin's new doll with the wheelchair:
We've been working really hard with Erin on her therapy at home. She has been having some issues lately, so we decided to take her to the pediatrician on Friday to see if we could figure out the cause. After many, many x-rays, and hours spent driving and waiting, waiting and driving, her pediatrician called me on our 2 1/2 hour drive home to tell me that Erin had (has?) a stress fracture in her left heel. He said that fractures like those can go undetected on the initial x-ray and are only spotted weeks later if there is a follow-up x-ray. So now we know the cause of Erin's ankle swelling and pain while we were at Kennedy Krieger last time. It's actually a relief to have a diagnosis, but it confirms that she does have osteoporosis in her lower extremities and we really need to do something about it soon. We now have to figure out if we can continue her rigorous therapy, or if we need to back off. She's been doing amazingly well, which makes it harder to have a set-back, but we don't want to cause further injury. I'll let you know what we find out.
Jade seems to be coming down with a cold, which only seems to make her more funny. Today her eyes were watering and she looked at me and said, "Mommy, my eyes are melting!" It was so cute! She walked around and told everyone who would listen that she has a cold, and she doesn't feel well. Tonight, as she was getting her pajamas on, she noticed a little red mark, like a bug bite, on her tummy, and she screamed with alarm. Immediately she said, "This is an emergency!" She decided that it must be a spider bite. I'm not sure where that came from, but it was funny.
We have another busy week, but I'll try to update again soon.
Here is Erin's new doll with the wheelchair:
Thursday, April 5, 2007
Something AMAZING happened today! After I tell you what it is, there will be a few who do not understand why it is such a big deal, so I hope I can explain well enough why it is. Taylor had physical therapy, so I was just playing with Erin and Jade, trying to keep them occupied and happy. In our therapy room there was a plastic slide that had big rails along both sides that ran all the way down. Erin and Jade were playing on the slide (with my help) when Erin decided she wanted to go down the slide feet first on her tummy. Normally she goes down head first so she can control her descent, which also ensures that she can do it by herself. Anyway, as she was going down feet first, I noticed that she had a lot of extensor tone in her legs, which means she had them locked out straight. As I picked her up from the bottom of the slide, I decided to see what would happen if I set her on her feet. As I stood her up, Erin grabbed the rails of the slide on both sides, and I noticed that the tone in her legs wasn't going away. I looked at the physical therapist (who works with both Taylor and Erin) and said, "she's standing!" I decided to take it a step further, and I actually let go of Erin. ERIN STOOD THERE BY HERSELF, HOLDING ONTO THE RAILS OF THE SLIDE! Did I mention she was standing all by herself?! The tone in her legs lasted about 3-4 more seconds before her legs gave out. Now, I know that doesn't seem very long to most of you, but we have NEVER seen Erin stand on her own -- EVER. The therapist and I were so excited we couldn't contain ourselves, which actually ended up scaring Erin. I probably would have been crying tears of joy at that moment, but I was busy trying to console Erin. Now, I'm not even sure if this could be considered a baby-step in our quest for Erin's recovery, but it was exciting none-the-less. It definitely doesn't mean she will be walking soon, but considering the fact that just one year ago she didn't have any tone in her legs, this is absolutely HUGE!!! I spoke to her therapist at the Kennedy Krieger Institute (thank you Amy) who said that it is called "standing on tone". She said that some patients who have had strokes or other injuries actually use the tone in their legs to learn to stand again. Needless to say, we're all very excited!
I just wanted to share our news. It seems like the perfect ending to our week and an absolute blessing as we go into Easter weekend. We hope you all have a safe and blessed weekend. I will post pictures tomorrow of our egg coloring adventures.
I just wanted to share our news. It seems like the perfect ending to our week and an absolute blessing as we go into Easter weekend. We hope you all have a safe and blessed weekend. I will post pictures tomorrow of our egg coloring adventures.
Wednesday, April 4, 2007
We are having another busy week filled with physical therapy (at the center and at home), as well as just trying to stay on track with everything else in our lives. We are very lucky to have Kevin Jr. with us for most of the week, as he has spring break. We are all thrilled to spend so much time with him. We had some beautiful weather (up until today), so we've spent a great deal of time outside. Yesterday we met our neighbors at a park down the road, and the girls had so much fun with them, especially at a new place. The most difficult thing for me to deal with in situations like that is Erin not being able to keep up with the other kids. She loves to play on all of the equipment -- she commando crawls, but she can't go very fast. Yesterday, all of the kids were running around playing games, and Erin just kept yelling, "Taylor, wait for me!", "Jade, wait for me!". I was heartbroken for her. And she usually doesn't want me to carry her, because the other kids don't have their moms carrying them. I guess it will only get worse when she gets to school, and I'm not sure how to deal with that, and I don't know how to help her deal with it either. I just hope she will find some good friends who will wait for her and will play games that she can play. That is also one of the reasons why we are working so hard right now, trying to recover as much function as possible. Anyway, right now it bothers Kevin and me more than it bothers Erin, which is good, but that will most likely change in a few years.
On a much lighter note, I have an amusing story to tell. We spend a great deal of time on the road, driving to and from physical therapy. The girls can only watch so many videos or listen to their favorite CD so many times before they become completely bored. At some point during every trip, we end up playing the game "I spy". Now, as an adult, you quickly figure out that there are a small number of possibilities of things to "spy" as you drive down the interstate. The girls, however, never tire of spying the same things over and over again. Taylor is the one who always wants to play, but Erin is right behind her in her enthusiasm for the game. Jade usually decides to listen rather than participate. Taylor does her best to spy new things, but Erin, inevitably, spies the same thing -- every time: a tree. Today, it actually became quite amusing as we took turns. Erin would say, every time, "I spy with my little eye something tall with green leaves on it." And each time, Taylor and I would pause, pretending we had to think about it, before we would say, "a tree?" And without fail, Erin would say, "yes, it is a tree!" with a great deal of enthusiasm and pride. Eventually, Taylor and I began describing a tree as well, and Erin was just as excited with that -- she always guessed it correctly. Too funny!
I think we are going to dye Easter eggs tonight, so everyone can participate. It is always so much fun to see what the kids can do. K.J. is very creative and does a fantastic job. The girls just like to color on the eggs and drop them in the dye. I'm sure I will take pictures, so I'll post them in the next few days.
I hope you all have a very blessed weekend.
Tuesday, March 27, 2007
For those of you who are interested, Discovery Health Channel is airing Erin and Jade's show again tonight at 9 p.m. EST. It is called "Conjoined Twins: Erin and Jade". I know it airs a few more times in the next few days, but I'm not sure when. You can go to www.discoveryhealth.com to look up the program and when it airs.
The girls all had an exciting day last week. Some wonderful people donated tickets for the circus to Children's hospital, and our amazing friends in the Volunteer Services office called us to see if we would like to go. Unfortunately, it was on the only day that Taylor receives therapy, and right now her therapy is very important. However, we decided that our children never have the opportunity to just be kids and have fun, because we're ALWAYS at doctors appointments or physical therapy (or in the car driving to and from those appointments). We happily accepted the tickets and made the short trek into Washington D.C. to enjoy the Ringling Brothers/Barnum and Bailey Circus. To our great surprise, the tickets happened to be in a suite (I've never even seen the inside of one before). It was incredible! We had been worried that we wouldn't be able to take Erin's wheelchair into the Verizon Center again, which would be very upsetting to her. Her wheelchair is her legs -- imagine going someplace without yours. Anyway, in the suite, she was able to wheel herself around -- her smile melted my heart. There was a bathroom (for Taylor's many trips) and lots of room for Jade to run around. It was better than anything we could have imagined! Then the circus started.... For those of you who watch American Idol, just think about the little girl who cried as she watched the show. That was me! I looked around at my girls, and the looks of excitement and pure wonder on their faces brought tears of joy to my eyes. They were able to be kids and enjoy something that kids of all ages find exciting. What a blessing! Again, to those of you who have the opportunity to donate things, you will just never know how much it affects the lives of those who receive it. We want to say thank you, from the bottom of our hearts, to the people who donated the circus tickets!
To top off the day, my parents took us all to Chuck E. Cheese's for lunch. Taylor has been asking to go for months. They should have been in excitement overload by then! We had a difficult time getting them to eat anything. After about 3 french fries and two bites of pizza each, they were ready to play some games, ride on the little stationary rides and climb in the big overhead tunnels. Taylor made a beeline for the climbing equipment, which caused Jade to want to do the same. After agreeing to let Jade go up, Erin decided she wanted to do it too. Now, here's a little tidbit of useless information: I'm extremely clausterphobic. However, since Erin could not climb up and through the tubes by herself, I quickly agreed (gulp) to take her up. Taylor was already up and crawling quickly, so up I went with Jade and Erin. They couldn't wait to get to the top. As soon as we climbed up the last big step, Jade took off through the tubes and Erin went into an absolute panic. We were up really high above the floor, and I think she felt completely out of control, even though I was holding her. She latched on around my neck as tightly as she could with her arms. Thankfully, there was a twirly slide right in front of us, so I sat down and away we went to the safety of the floor below. Now, I was very sad that Erin had become so frightened, but I would be lying if I said I wasn't relieved that I wouldn't have to crawl through those tunnels! Phew! After that, Erin happily rode on the rides and played games. She liked earning tickets, even though she didn't know what they were for. Taylor and Jade felt the same, once we were finally able to coax them from the climbing equipment. Thank you Grandma and Grandpa for our extra-special lunch/playtime.
All in all, it was easily the best day we've had in a very long time. It was wonderful to see the girls just being kids. I will post pictures soon from our amazing day.
We hope you all have a wonderful day as well. Take care!
The girls all had an exciting day last week. Some wonderful people donated tickets for the circus to Children's hospital, and our amazing friends in the Volunteer Services office called us to see if we would like to go. Unfortunately, it was on the only day that Taylor receives therapy, and right now her therapy is very important. However, we decided that our children never have the opportunity to just be kids and have fun, because we're ALWAYS at doctors appointments or physical therapy (or in the car driving to and from those appointments). We happily accepted the tickets and made the short trek into Washington D.C. to enjoy the Ringling Brothers/Barnum and Bailey Circus. To our great surprise, the tickets happened to be in a suite (I've never even seen the inside of one before). It was incredible! We had been worried that we wouldn't be able to take Erin's wheelchair into the Verizon Center again, which would be very upsetting to her. Her wheelchair is her legs -- imagine going someplace without yours. Anyway, in the suite, she was able to wheel herself around -- her smile melted my heart. There was a bathroom (for Taylor's many trips) and lots of room for Jade to run around. It was better than anything we could have imagined! Then the circus started.... For those of you who watch American Idol, just think about the little girl who cried as she watched the show. That was me! I looked around at my girls, and the looks of excitement and pure wonder on their faces brought tears of joy to my eyes. They were able to be kids and enjoy something that kids of all ages find exciting. What a blessing! Again, to those of you who have the opportunity to donate things, you will just never know how much it affects the lives of those who receive it. We want to say thank you, from the bottom of our hearts, to the people who donated the circus tickets!
To top off the day, my parents took us all to Chuck E. Cheese's for lunch. Taylor has been asking to go for months. They should have been in excitement overload by then! We had a difficult time getting them to eat anything. After about 3 french fries and two bites of pizza each, they were ready to play some games, ride on the little stationary rides and climb in the big overhead tunnels. Taylor made a beeline for the climbing equipment, which caused Jade to want to do the same. After agreeing to let Jade go up, Erin decided she wanted to do it too. Now, here's a little tidbit of useless information: I'm extremely clausterphobic. However, since Erin could not climb up and through the tubes by herself, I quickly agreed (gulp) to take her up. Taylor was already up and crawling quickly, so up I went with Jade and Erin. They couldn't wait to get to the top. As soon as we climbed up the last big step, Jade took off through the tubes and Erin went into an absolute panic. We were up really high above the floor, and I think she felt completely out of control, even though I was holding her. She latched on around my neck as tightly as she could with her arms. Thankfully, there was a twirly slide right in front of us, so I sat down and away we went to the safety of the floor below. Now, I was very sad that Erin had become so frightened, but I would be lying if I said I wasn't relieved that I wouldn't have to crawl through those tunnels! Phew! After that, Erin happily rode on the rides and played games. She liked earning tickets, even though she didn't know what they were for. Taylor and Jade felt the same, once we were finally able to coax them from the climbing equipment. Thank you Grandma and Grandpa for our extra-special lunch/playtime.
All in all, it was easily the best day we've had in a very long time. It was wonderful to see the girls just being kids. I will post pictures soon from our amazing day.
We hope you all have a wonderful day as well. Take care!
Sunday, March 18, 2007
Wow! Where do I start?! On February 26th (Erin and Jade's birthday) we traveled to Baltimore, MD again for Erin's therapy. We returned to the International Center for Spinal Cord Injury at the Kennedy Krieger Institute. Let me just say that as soon as we even pull up to the front doors, we are surrounded by wonderful people. From the guys who park the vehicles to the fantastic people who work security, the receptionists, nurses, doctors and especially all the therapists -- they all make us feel completely welcome and cared for. We could not have found a better place to be! Thank you to everyone at KKI for taking care of our family! Since we arrived on their birthday, Erin's therapists, Becca and Amy, decorated the gym and had princess tiaras for all three girls. They had princess birthday hats for the other therapist, techs, and patients to wear, and they even gave Erin and Jade little gifts. All of this, after they had already come to the birthday party at our house on February 24th. Thank you Amy and Becca for caring so much about our girls and for going above and beyond all expectations. We stayed in Baltimore for two weeks, spending our nights at the Ronald McDonald House. We had a bigger room this time, which was so nice, and our stay there was fantastic. We always meet the greatest people, and each story we hear makes our hearts break, but it also reminds us (as if we need reminding) how very precious life is. The strength of these children/teens inspires me. My mom came with me to help take care of the girls, which I am so thankful for. Things can get a little hectic each day, as we spend 4-5 hours at KKI for therapy. My mom, along with everyone else in the gym, helped to entertain Taylor and Jade while Erin worked hard. Everyone was very happy with the improvements Erin has made. She continues to improve her trunk strength, and she has gained quite a bit of muscle in her lower body through our continuous use of electrical stimulation on her abdomen, back and legs. Amy, Erin's PT, worked with me to teach me how to help Erin walk on the treadmill. She showed me how to move her legs and cue her muscles in the correct order as she walks. I was able to actually feel a lot of activity in Erin's muscles in her legs. While we still don't know if this activity is voluntary, it is much more than we've ever felt in her legs before. On Monday, March 5th, I was helping Erin to walk. It is a 3 person job: there is one person working each leg, and a third person holds Erin from behind so she doesn't swing as we move her legs. Just to try to give you a better idea of what this looks like, I will try to describe the equipment. Erin is suspended above a treadmill by a harness attached to something called a Lite Gait Trainer. I have pictures of it on the site from our previous visits to KKI. I will post a few new pictures of this equipment. I have some cute ones of Erin raising herself up high above the treadmill using the remote control attached to the Lite Gait. Anyway, on that Monday, we were feeling more activity in Erin's legs than we have EVER felt before. The new research has shown that walking every day can make a huge difference, and we felt like we were witnessing the results. However, along with all of the activity, Erin cried the entire time. We couldn't figure out why she was crying, because she is usually so happy and compliant when it comes to her therapy. We finally decided that maybe Erin was actually feeling some of the activity in her legs, but she didn't know how to interpret those sensations. Unfortunately, Monday night I discovered that Erin's left ankle was pretty swollen. I immediately thought of the possibility of a fracture. Because of Erin's spinal cord injury and the fact that she can't walk or run around, Erin's bones in her legs are less dense. She is far more susceptible to fractures than most people. Basically she has osteoporosis in her lower extremities. We are working with a doctor who specializes in Osteogenesis Imperfecta (brittle bone disease) to come up with a treatment plan to strengthen Erin's bones. Anyway, I knew that we had just suffered a setback, but I was hoping against hope that it wasn't a major one. On Tuesday morning we took Erin over to Johns Hopkins Medical Center for x-rays on her legs. Fortunately there were no fractures, but that left us with more questions than answers. It could have been a sprain or a strain, or it could possibly be a number of other issues, some of which are quite rare. Since our family seems to gravitate towards rare conditions, we could not rule those out! On Tuesday night I was looking at Erin's ankle and feeling around the swollen area. Each time I pressed on her ankle, her leg would pull back and she would say, "ouch!". When I asked her why she said it, Erin told me that I was touching her owwie (sp?). What?! I would wait until she wasn't paying any attention to me and then I would press on her ankle again. Each time I got the same response. Erin was feeling pain! Now, most parents don't celebrate the fact that their child feels pain, however, the fact that Erin was feeling something in her legs was AMAZING!! That made me want to push ahead with her therapy, but we had to wait until we knew what was causing the swelling and the pain. She still received therapy the rest of the week, but we weren't able to get her up walking more than once or twice. She was able to use her new bike, which we had brought with us, so she literally rode her bike all over the building, on three different floors. Amy attached her e-stim unit, so her leg muscles were working to push the pedals. On Friday, when the swelling hadn't gone down, we made the trek over to Johns Hopkins again for an ultrasound on Erin's left leg. There was a possibility that she had a blood clot in her leg. Thankfully that was ruled out, but again we were left with all questions.
All in all, our two week stay gave us more hope than ever before that Erin will have recovery of function. We still don't know to what extent, but we will continue to work for as much recovery as possible. It also ignites a new fire to work as hard as possible for stem cell research and spinal cord injury research. If you ever have the opportunity to help in any way, there are millions out there who would be eternally grateful. We have seen the effects of the hard work from the people at Kennedy Krieger. There is a man named Jimmy who has truly shown us what hard work and determination can do. The first time we met him he had no function from the neck down. On this last visit, I was able to watch him walk down the hallway and then he went up and down the stairs using only a cane. Talk about miracles! Way to go Jimmy! It brings tears to my eyes each time I think about him.
We returned home from Baltimore on Friday, March 9, and then we prepared for Kevin's return home. He has been traveling with his Marine unit since the end of January, so we were all excited to have him back. Kevin got back on Saturday evening to the great excitement of all the girls. He had a great homecoming! We want to thank my parents for coming to stay at our house and help us out with EVERYTHING while Kevin has been gone. We appreciate it more than you could know.
On Monday, March 12 we had to take Taylor to Children's Hospital for an MRI. She has begun to go downhill lately and show symptoms of her cord being re-tethered. Her neurosurgeon wanted us to come in earlier, but we had been in Baltimore, so he got us in as soon as we were back. She is an old pro at having MRI's, so being sedated doesn't frighten her anymore. After the MRI, we went right up to see the doctor. He told us that her spinal cord is re-tethered, but it is not at the point where he would do anything yet. Unfortunately, he has to wait until Taylor is actually losing function in her lower body before he would do surgery again on her spinal cord. The reason for this is because the surgery is so dangerous that the risk of Taylor losing function just from the surgery alone is extremely high. We just have to wait and watch her for more serious symptoms. She has gone through a growth spurt lately, which put a lot of pressure on her tethered spinal cord, pulling and stretching it when it is not meant to be pulled a stretched. Our hope is that once the growth spurt has stopped, she will stabilize out and her cord will be o.k. for a while. We will just have to wait and see -- that's pretty difficult to do. Each day we watch Taylor to see if her symptoms are worse than the day before. This is something that has the potential to move pretty quickly, so we have to remain extremely vigilant.
The rest of our week was truly crazy, which I will explain later. Everyone is doing well, and we're all healthy. Isn't that what's important?! I will continue my quest to try to update more often. If I don't succeed, I apologize in advance! We hope you are doing well. Please take care and have a great week!
On Monday, March 5th, I was helping Erin to walk. It is a 3 person job: there is one person working each leg, and a third person holds Erin from behind so she doesn't swing as we move her legs. Just to try to give you a better idea of what this looks like, I will try to describe the equipment. Erin is suspended above a treadmill by a harness attached to something called a Lite Gait Trainer. I have pictures of it on the site from our previous visits to KKI. I will post a few new pictures of this equipment. I have some cute ones of Erin raising herself up high above the treadmill using the remote control attached to the Lite Gait. Anyway, on that Monday, we were feeling more activity in Erin's legs than we have EVER felt before. The new research has shown that walking every day can make a huge difference, and we felt like we were witnessing the results. However, along with all of the activity, Erin cried the entire time. We couldn't figure out why she was crying, because she is usually so happy and compliant when it comes to her therapy. We finally decided that maybe Erin was actually feeling some of the activity in her legs, but she didn't know how to interpret those sensations. Unfortunately, Monday night I discovered that Erin's left ankle was pretty swollen. I immediately thought of the possibility of a fracture. Because of Erin's spinal cord injury and the fact that she can't walk or run around, Erin's bones in her legs are less dense. She is far more susceptible to fractures than most people. Basically she has osteoporosis in her lower extremities. We are working with a doctor who specializes in Osteogenesis Imperfecta (brittle bone disease) to come up with a treatment plan to strengthen Erin's bones. Anyway, I knew that we had just suffered a setback, but I was hoping against hope that it wasn't a major one. On Tuesday morning we took Erin over to Johns Hopkins Medical Center for x-rays on her legs. Fortunately there were no fractures, but that left us with more questions than answers. It could have been a sprain or a strain, or it could possibly be a number of other issues, some of which are quite rare. Since our family seems to gravitate towards rare conditions, we could not rule those out! On Tuesday night I was looking at Erin's ankle and feeling around the swollen area. Each time I pressed on her ankle, her leg would pull back and she would say, "ouch!". When I asked her why she said it, Erin told me that I was touching her owwie (sp?). What?! I would wait until she wasn't paying any attention to me and then I would press on her ankle again. Each time I got the same response. Erin was feeling pain! Now, most parents don't celebrate the fact that their child feels pain, however, the fact that Erin was feeling something in her legs was AMAZING!! That made me want to push ahead with her therapy, but we had to wait until we knew what was causing the swelling and the pain. She still received therapy the rest of the week, but we weren't able to get her up walking more than once or twice. She was able to use her new bike, which we had brought with us, so she literally rode her bike all over the building, on three different floors. Amy attached her e-stim unit, so her leg muscles were working to push the pedals. On Friday, when the swelling hadn't gone down, we made the trek over to Johns Hopkins again for an ultrasound on Erin's left leg. There was a possibility that she had a blood clot in her leg. Thankfully that was ruled out, but again we were left with all questions. All in all, our two week stay gave us more hope than ever before that Erin will have recovery of function. We still don't know to what extent, but we will continue to work for as much recovery as possible. It also ignites a new fire to work as hard as possible for stem cell research and spinal cord injury research. If you ever have the opportunity to help in any way, there are millions out there who would be eternally grateful. We have seen the effects of the hard work from the people at Kennedy Krieger. There is a man named Jimmy who has truly shown us what hard work and determination can do. The first time we met him he had no function from the neck down. On this last visit, I was able to watch him walk down the hallway and then he went up and down the stairs using only a cane. Talk about miracles! Way to go Jimmy! It brings tears to my eyes each time I think about him.
We returned home from Baltimore on Friday, March 9, and then we prepared for Kevin's return home. He has been traveling with his Marine unit since the end of January, so we were all excited to have him back. Kevin got back on Saturday evening to the great excitement of all the girls. He had a great homecoming! We want to thank my parents for coming to stay at our house and help us out with EVERYTHING while Kevin has been gone. We appreciate it more than you could know.
On Monday, March 12 we had to take Taylor to Children's Hospital for an MRI. She has begun to go downhill lately and show symptoms of her cord being re-tethered. Her neurosurgeon wanted us to come in earlier, but we had been in Baltimore, so he got us in as soon as we were back. She is an old pro at having MRI's, so being sedated doesn't frighten her anymore. After the MRI, we went right up to see the doctor. He told us that her spinal cord is re-tethered, but it is not at the point where he would do anything yet. Unfortunately, he has to wait until Taylor is actually losing function in her lower body before he would do surgery again on her spinal cord. The reason for this is because the surgery is so dangerous that the risk of Taylor losing function just from the surgery alone is extremely high. We just have to wait and watch her for more serious symptoms. She has gone through a growth spurt lately, which put a lot of pressure on her tethered spinal cord, pulling and stretching it when it is not meant to be pulled a stretched. Our hope is that once the growth spurt has stopped, she will stabilize out and her cord will be o.k. for a while. We will just have to wait and see -- that's pretty difficult to do. Each day we watch Taylor to see if her symptoms are worse than the day before. This is something that has the potential to move pretty quickly, so we have to remain extremely vigilant.
The rest of our week was truly crazy, which I will explain later. Everyone is doing well, and we're all healthy. Isn't that what's important?! I will continue my quest to try to update more often. If I don't succeed, I apologize in advance! We hope you are doing well. Please take care and have a great week!
Monday, February 26, 2007
We would like to wish our beautiful little girls, Erin Faith and Jade Hope, a very happy birthday!!! We can't believe they are 3 already! It has been an amazing and blessed journey -- one that we would do all over again in a heartbeat. We want to thank everyone for the love and support we have received over the years.
We had a wonderful princess party on Saturday for our princesses. We were happily surprised at the people who were able to attend. Thank you to those of you who came. It meant so much to us that you took the time, and some of you drove quite far, in order to celebrate with us. We will never be able to fully express our gratitude for your thoughtfulness and care for our girls.
We also want to thank the many people who have already posted happy birthday messages to Jade and Erin or sent e-mails. We will print them all out so they will be able to read them someday. I think they will be amazed at how many people really care about them.
Our family would like to wish Kendra and Maliyah Herrin a very happy birthday as well. They are a set of formerly conjoined twins who have had their own amazing journey, and they were born on February 26, 2002. What a great day!
Happy Birthday to our little miracles!!! We are so very proud of you both!
We had a wonderful princess party on Saturday for our princesses. We were happily surprised at the people who were able to attend. Thank you to those of you who came. It meant so much to us that you took the time, and some of you drove quite far, in order to celebrate with us. We will never be able to fully express our gratitude for your thoughtfulness and care for our girls.
We also want to thank the many people who have already posted happy birthday messages to Jade and Erin or sent e-mails. We will print them all out so they will be able to read them someday. I think they will be amazed at how many people really care about them.
Our family would like to wish Kendra and Maliyah Herrin a very happy birthday as well. They are a set of formerly conjoined twins who have had their own amazing journey, and they were born on February 26, 2002. What a great day!
Happy Birthday to our little miracles!!! We are so very proud of you both!
Thursday, February 22, 2007
We've been really busy with Erin's therapy as well as getting ready for Jade and Erin's birthday. We can't believe they're going to be 3 years old!! Wow! What an amazing journey we've been on! Hopefully it will just continue to get better and better. We want to thank all of you who have supported us through prayers and encouragement. We could never express how grateful we are to those of you who have stood behind us as we travel this road.
Erin and Jade have decided that they would like a Princess Party this year. They picked out things with Disney Princesses on them. I guess it's quite fitting, since they are our princesses! We are truly blessed to have them both still in our lives. The odds were definitely against us. We want to take a moment to again thank the hundreds of doctors, nurses, hospital administration, volunteer services staff, P.R./Marketing, lab techs, blood banks, physical and occupational therapists, and many others from two different hospitals (National Naval Medical Center in Bethesda, and Children's National Medical Center in Washington D.C.) who helped to make sure our daughters had the very best chances possible. We owe you all a debt of gratitude that we will never be able to repay.
We will post pictures after the party on Saturday. You can look forward to everything Princess!
Erin and Jade have decided that they would like a Princess Party this year. They picked out things with Disney Princesses on them. I guess it's quite fitting, since they are our princesses! We are truly blessed to have them both still in our lives. The odds were definitely against us. We want to take a moment to again thank the hundreds of doctors, nurses, hospital administration, volunteer services staff, P.R./Marketing, lab techs, blood banks, physical and occupational therapists, and many others from two different hospitals (National Naval Medical Center in Bethesda, and Children's National Medical Center in Washington D.C.) who helped to make sure our daughters had the very best chances possible. We owe you all a debt of gratitude that we will never be able to repay.
We will post pictures after the party on Saturday. You can look forward to everything Princess!
Wednesday, February 14, 2007
Happy Valentine's Day!!! We hope you have a wonderful day full of lots of love!
I wanted to post an update, because Erin received a gift yesterday, and we will never be able to fully express how truly grateful we are to have gotten it. We have been working with the many wonderful people from Kennedy Krieger Institute for a few months to try to get Erin a tricycle that she can ride. It was very expensive, and we knew we would never be able to afford it. However, because of the amazing generosity of an anonymous donor, Erin now has her own "bike". We received word last week that someone wanted to purchase it, and the bike was delivered yesterday. I put it together immediately, and just as she has done in the past with new equipment, Erin got on and started riding. Throughout the entire process, Taylor and Jade were not at all jealous. They were extremely excited that Erin would now have her own bike to ride. The bike, called an AmTryke, has foot pedals for her feet to strap into and hand pedals for her to use to propel herself. It will not only strengthen her arms, but it will provide exercise for her legs. We can also hook up the e-stim on her legs, and she will be able to use her legs to pedal. What a wonderful gift. I will post pictures to show you her new bike, and I will also attempt to post a short video of Erin riding.
Ever since we gave birth to Erin and Jade, we have been astounded by the kindness and generosity of others. Without these wonderful people, we would not be able to provide our children with some of the care and equipment they need. We want to thank all of you who have ever donated anything (time, equipment, books, gifts, money, hugs, etc) to a family in need. For those of you who have it in your heart to donate something, we encourage you to do so, because the effects it will have on an entire family will definitely make it worth all of the time and effort it takes. For those of you who keep many families in your thoughts and prayers, that is just as important and an equally wonderful gift. Thank you!
Well, I cannot believe that our twins are almost 3 years old. In less than 2 weeks we will be celebrating this incredible milestone. It has gone by so quickly! We are thankful for every second that we have had with them. What a blessing and a gift.
I wanted to post an update, because Erin received a gift yesterday, and we will never be able to fully express how truly grateful we are to have gotten it. We have been working with the many wonderful people from Kennedy Krieger Institute for a few months to try to get Erin a tricycle that she can ride. It was very expensive, and we knew we would never be able to afford it. However, because of the amazing generosity of an anonymous donor, Erin now has her own "bike". We received word last week that someone wanted to purchase it, and the bike was delivered yesterday. I put it together immediately, and just as she has done in the past with new equipment, Erin got on and started riding. Throughout the entire process, Taylor and Jade were not at all jealous. They were extremely excited that Erin would now have her own bike to ride. The bike, called an AmTryke, has foot pedals for her feet to strap into and hand pedals for her to use to propel herself. It will not only strengthen her arms, but it will provide exercise for her legs. We can also hook up the e-stim on her legs, and she will be able to use her legs to pedal. What a wonderful gift. I will post pictures to show you her new bike, and I will also attempt to post a short video of Erin riding.
Ever since we gave birth to Erin and Jade, we have been astounded by the kindness and generosity of others. Without these wonderful people, we would not be able to provide our children with some of the care and equipment they need. We want to thank all of you who have ever donated anything (time, equipment, books, gifts, money, hugs, etc) to a family in need. For those of you who have it in your heart to donate something, we encourage you to do so, because the effects it will have on an entire family will definitely make it worth all of the time and effort it takes. For those of you who keep many families in your thoughts and prayers, that is just as important and an equally wonderful gift. Thank you!
Well, I cannot believe that our twins are almost 3 years old. In less than 2 weeks we will be celebrating this incredible milestone. It has gone by so quickly! We are thankful for every second that we have had with them. What a blessing and a gift.
Monday, February 12, 2007
We really apologize for the delay in updates. We've been having some major computer issues, and I haven't been able to update the site at all. I'm not quite sure how I got it to work this time, but who am I to ask questions? I'm just happy it's working!
Many of you have been worried about Taylor, since in the last update she had just been discharged from the hospital. I'm excited to report that she is doing very well. She continued to have low-grade fevers for a few days after returning from the hospital, but she has been fever-free for the past two weeks. She is back to her smiley little self, eating and drinking normally. We can't even express how relieved we are by the fact that she has recovered. When she was in the hospital, the doctors couldn't figure out what was wrong at first. Even though we were pretty sure it was a UTI, there was nothing growing out in culture. Of course, all of the worst possibilities ran through our minds. We can never ask, "what are the odds?", because we have beaten every odd out there so far. If it had been anything worse than what it was, we definitely would have gone out to buy some lottery tickets! Anyway, Taylor will have to undergo a test called a DMSA in a few months. This test is done in nuclear medicine, and they will look at her kidneys to make sure there isn't any scarring. Because of her high fevers, it is a possibility. She has had this test done before, so she should be fine with it -- the worst part is that she has to lie completely still for about 45 minutes!
While Taylor was in the hospital and we were all up in her room, Erin looked at me and said, "Mommy, I'm a superhero!" I told her that she absolutely is, and she is definitely our hero! She has to put up with so much at the age of two, and we always feel that she deserves so much more, especially after everything she has gone through. She is so brave and strong, and she never complains. Of course, her sisters deserve a great deal of credit also. They are with us each day as we drive to and from therapy. They are there for each therapy session and are really good about encouraging Erin when she is tired or grumpy. Taylor and Jade get things for Erin when she can't reach them, and they even give her their own toys when she asks (even when it is their favorite toy). We are so proud of all three girls! Sadly, they have had to grow up much too fast and learn things that no parent ever wants their children to know.
Kevin Jr. is doing great! He just had his last game of the season. I will continue to try to get pictures uploaded to the site, because I have some from the game. We were so happy that he made the team this year and was able to play the sport that he loves. He too has gone through far too much in his life, but he has taken it all in stride. We couldn't be more proud of him! His sisters absolutely adore him, and they love to cheer for him at his games. My sister even got them their own pom-poms, so they could be cheerleaders. I have some great pictures of them cheering.
My parents are here for two months to lend a hand. It's been wonderful, and the girls couldn't be happier. We can't thank them enough for everything they do for our family.
Well, hopefully I'll be able to update again soon. Thanks for being so patient and for caring so much about our family. We truly appreciate all of the wonderful messages in our guestbook and the e-mails we receive. We are so blessed to have all of you watching over our family. Have a great week!
Many of you have been worried about Taylor, since in the last update she had just been discharged from the hospital. I'm excited to report that she is doing very well. She continued to have low-grade fevers for a few days after returning from the hospital, but she has been fever-free for the past two weeks. She is back to her smiley little self, eating and drinking normally. We can't even express how relieved we are by the fact that she has recovered. When she was in the hospital, the doctors couldn't figure out what was wrong at first. Even though we were pretty sure it was a UTI, there was nothing growing out in culture. Of course, all of the worst possibilities ran through our minds. We can never ask, "what are the odds?", because we have beaten every odd out there so far. If it had been anything worse than what it was, we definitely would have gone out to buy some lottery tickets! Anyway, Taylor will have to undergo a test called a DMSA in a few months. This test is done in nuclear medicine, and they will look at her kidneys to make sure there isn't any scarring. Because of her high fevers, it is a possibility. She has had this test done before, so she should be fine with it -- the worst part is that she has to lie completely still for about 45 minutes!
While Taylor was in the hospital and we were all up in her room, Erin looked at me and said, "Mommy, I'm a superhero!" I told her that she absolutely is, and she is definitely our hero! She has to put up with so much at the age of two, and we always feel that she deserves so much more, especially after everything she has gone through. She is so brave and strong, and she never complains. Of course, her sisters deserve a great deal of credit also. They are with us each day as we drive to and from therapy. They are there for each therapy session and are really good about encouraging Erin when she is tired or grumpy. Taylor and Jade get things for Erin when she can't reach them, and they even give her their own toys when she asks (even when it is their favorite toy). We are so proud of all three girls! Sadly, they have had to grow up much too fast and learn things that no parent ever wants their children to know.
Kevin Jr. is doing great! He just had his last game of the season. I will continue to try to get pictures uploaded to the site, because I have some from the game. We were so happy that he made the team this year and was able to play the sport that he loves. He too has gone through far too much in his life, but he has taken it all in stride. We couldn't be more proud of him! His sisters absolutely adore him, and they love to cheer for him at his games. My sister even got them their own pom-poms, so they could be cheerleaders. I have some great pictures of them cheering.
My parents are here for two months to lend a hand. It's been wonderful, and the girls couldn't be happier. We can't thank them enough for everything they do for our family.
Well, hopefully I'll be able to update again soon. Thanks for being so patient and for caring so much about our family. We truly appreciate all of the wonderful messages in our guestbook and the e-mails we receive. We are so blessed to have all of you watching over our family. Have a great week!
Thursday, January 25, 2007
Taylor was admitted to the hospital yesterday morning with a temperature of 105 (she hit that number two more times after that). It was a little frightening and difficult to see our little girl so miserable. The last few days have been pretty tough with very little sleep for most of us, but we think she has finally turned the corner. As they were getting ready to discharge her this afternoon, her temperature spiked up to 104.8 again. Aaaaahhhhhh! After giving her more Motrin and Tylenol and observing her for a few hours, they allowed us to bring her home. She has received two doses of antibiotics through an I.V., as well as fluid, for the past few days (she was already dehydrated from her illness last week). Taylor is still pretty weak and doesn't feel completely well yet, but she is (hopefully) on the road to recovery. We are all looking forward to getting some sleep tonight. We just hope she sleeps well, however we're not counting on it. Because of her UTI and the amount of fluid she needs to drink, we'll probably be taking her to the bathroom every hour. Oh well, it's just nice to be home!
Everyone else is doing well!
Monday, January 23, 2007
Boing, boing, boing... that was our children yesterday, bouncing off the walls as they watched it snow for the first time this winter! They were so excited to go outside to play, and it was difficult to convince them that we had to wait a few hours until there was enough snow on the ground to do anything with. Of course, I was excited too, as I love the snow. Thankfully all of the girls were feeling well; they started eating again on Saturday. Taylor is still running a low-grade fever once in awhile throughout the day, so Kevin and I think she may have another UTI. We truly hope not, but we'll definitely keep a close eye on her. Anyway, the girls and I went out to play in the snow yesterday afternoon while the guys stayed inside to watch football. It was still snowing, so Taylor was the only one to make a snow angel. Erin and Jade didn't like the snow falling in their faces! In fact, Jade disliked it so much that she insisted that I get her sunglasses, which she wore for the remainder of our time outside! 
It was pretty cute! We all had so much fun trying to make snowballs (the snow wasn't sticky enough) and sledding down our hill in the backyard (at least it's good for something). I got a lot of exercise carrying Erin and Jade up the hill, so there were added benefits! Erin asked if she could crawl in the snow, and she figured out that she could go down the hill on her tummy all by herself. Jade was the first one to want to go inside, and I actually had to convince Erin and Taylor that we had to go warm up for a little while. We went back out this morning, but the snow had already started to melt. We were able to go sledding for about an hour before we were covered in mud and had to come back inside the house. Hopefully it will snow at least one more time this winter.
I'll try to post some pictures of our recent outings. We're still having computer issues, so I may not be able to do it right now.
We hope you all have a wonderful week!
Friday, January 19, 2007
Taylor and Jade are still not feeling well. I was hoping yesterday would prove to be better when both girls requested breakfast, but Taylor only took one bite of her pancakes and Jade ate one mini-donut. They lie around all day, very listless, and we can't get them to eat or drink very much at all. We are in daily contact with their pediatrician, who is absolutely wonderful. We were extremely fortunate to find him; he actually sees children at his house if it is after hours or on the weekend! We have called him in the middle of the night before, and he is never concerned about the time or inconvenience. Anyway, we're hoping the girls start to recover soon. We're very worried about dehydration, and we watch them closely each day and check their weights. Thankfully Erin never came down with this, so she is still the happy one in our house.
Abygail and Madysen Fitterer, formerly conjoined twins who were separated on January 3, are having a bit of a tough time with their recovery. Their parents had a tragedy in the family right before Christmas, and with the separation surgery and difficult recovery of their daughters, they could use support and prayers right now. You may want to go to their website to offer some words of encouragement; I'm sure they would appreciate it.
We want to thank those of you who took the time to write to us with suggestions for books to read to Taylor. We are excited to check them out.
Thursday, January 18, 2007
Well, we have been dealing with Rotavirus or something very similar with Taylor and Jade all week. They both became ill on Saturday afternoon, and it hasn't let up since then. Neither one of them has eaten much all week -- it's difficult just to get them to drink anything. We're so worried they'll become dehydrated, so we push as much fluid as we can. Jade woke up this morning very hungry and thirsty, so hopefully she's starting to recover, and Taylor just requested pancakes, so keep your fingers crossed that she's on the right road as well. Let's just say it has been a long, hard week!
Thankfully Erin never came down this. She has been her happy little self, making us smile, even as her sisters were cranky. She hasn't been able to go to therapy, because we couldn't take Taylor and Jade out, but we've been doing as much as we can with her here.
Taylor and I finished reading her first chapter book last weekend. We read Charlotte's Web, and she loved it! We've now moved on and are reading our second Arthur book. If anyone has any suggestions for books that a five-year old might like, we would appreciate it. All of our girls just love books, and I'm so happy we could help to instill that in them.
I'm off to make pancakes. Let's hope they get eaten!
Sunday, January 14, 2007
I would first like to wish my mom a very happy birthday!! We all love you so much, and we hope you have a special day today! The girls are excited to throw a party for you when you get here.
Last week we enrolled Erin in a very special program called "Wheeling Angels". This program links an adult volunteer up with a child in a wheelchair. The volunteer then sends the child a card or small gift each week for six months. What a huge commitment for the volunteer! But let me just say that it is so worth it to see the smile on our daughter's face when she receives something in the mail. I wish our "angel" could see that smile! Erin received her first package on Saturday, and her angel Lisa actually sent little gifts for all of the kids. They were so thrilled!! For those of you out there that would like to do something special for a child with a disability, this program is a wonderful way to do it. You can check it out at www.wheelingangels.com Thank you Lisa for creating this program and for being such a special person!
Oh, here is another story about Erin that just tears at the heart. The other night Kevin was getting her ready for bed. All of a sudden she told Kevin that he needed to do surgery on her legs. When he asked her why, she said he needed to do surgery to fix her legs, because they weren't working. To hear that coming out of the mouth of a two year old -- I can't describe how terrible that feels. She looks at her daddy as her hero, and it kills him that he can't make it better for her. With all that we do to try to help Erin, I always feel like we're just not doing enough. I'm sure every parent must feel like that, especially those who have children with special needs.
Of course, having told that story, I do want to say that all of our children keep us smiling each day. They bring so much joy to our lives. We are truly blessed!
Monday, January 8, 2007
Hi! I was hoping to update last week, but our computer has been down, and Kevin was working like crazy to figure out what was wrong.
Some of you may be keeping track of Abygail and Madysen Fitterer, who were successfully separated last Wednesday. Madysen had to go in for a second surgery on Thursday, but they seem to be doing a bit better now. The recovery process is difficult, especially the first few days. Their parents have been through so much, and they could use as much support as possible right now. We have a link to their website on our links page, if you would like to leave them a note of encouragement.
We were quite busy with physical therapy and basketball games last week. The girls love to go to Kevin Jr.'s games. They cheer for him when he gets in the game, and they love to be around all of the people and excitement. However, their favorite part of being there is watching the cheerleaders. At the game on Thursday, every time Erin even saw a cheerleader somewhere in the gym, she would tap my arm and point. It was so adorable! Then she would wheel down to where they were sitting and look up at them. When one of the cheerleaders would smile or wave, she would wheel back to us as quickly as she could. We kept telling her to wave, and she almost did one time -- she raised her arm up, but then she scooted back to us before following through. Kevin and I just laughed. Jade, our social butterfly, would go with Erin to see the cheerleaders, and she would actually smile and wave. She and Taylor were doing some of the cheers, and they all said they want to be cheerleaders when they get bigger.
Erin has been doing something amazing over the last two weeks. She is actually able to straighten her legs a little when we ask her to. It's extremely difficult for her, and it takes a great deal of effort, but she is able to do it. What makes it so difficult for her is that she has to fight against gravity. Her muscles are so weak that, up until this point, she may have had the ability to use some of her muscles in her legs, but she didn't have the strength to do it. We've been told numerous times that if we had a pool to do therapy in, it would help her tremendously. Kevin and I want to do absolutely everything possible to help her to walk someday, so we're going to work hard to find a pool to take her to.
Even at 2 1/2 years old, Erin is painfully aware of the fact that she can't walk and run around like her sisters. We were given tickets to go to the Washington Wizards game on Friday night. Everyone was very excited, especially the girls, because they love to watch the mascot G Wiz. The only problem was that we couldn't take Erin's wheelchair with us. Before we left, she kept asking Kevin and I about it, and we could tell that she was upset and worried. When Kevin was talking to her, she asked him again if we could take her wheelchair. When he told her no, she became very sad and said, "but Daddy, my legs don't work, and I can't walk like Jade and Taylor." It brings tears to my eyes each time I think about it. A two year old shouldn't have to worry about the issues she deals with on a daily basis. A two year old shouldn't have to figure out how she is going to get from point A to point B, with or without her wheelchair. She shouldn't have to know about electrical stimulation or the many medical terms that come out of her mouth each and every day. It breaks our hearts that she can't just get up and play with her sisters. With that said, we are thankful each and every day that she is alive. We are thankful that she will hopefully have the opportunity to walk one day with advances in research. She and Jade are absolute miracles (along with our other children), and we couldn't ask for anything more.
We want to thank Ms. Jackie and Children's Hospital for the tickets to the game on Friday, and we especially want to thank you for the special treatment of Kevin Jr. They made it possible for Kevin Jr. to go out on the court when the players were being announced to be a part of the ball exchange. He was given a basketball by one of the Wizards starters, which was autographed by the team. It was a special moment for him, and it was wonderful to see the smile on his face! Thank you again!
The other story I wanted to tell is about Taylor. All of the girls loved having the Christmas decorations up. In fact, when we were putting them up before Christmas, Jade ran around the house screaming, "Christmas is coming, Christmas is coming!" (just like, "the British are coming, the British are coming"). Last week we decided it was time to take everything down. When Kevin told Taylor earlier in the week that we were planning on doing it, she was extremely sad. We decided to include her in the process, which actually seemed to help. As we were taking everything off the tree, Taylor said goodbye to each and every ornament. She was telling us stories about them, especially the ones which she has received as gifts (her first Christmas). Kevin and I thought it was very cute. Jade and Erin missed out on the process because they were napping, so imagine their sadness upon waking and seeing that everything was gone. They still keep asking where our Christmas tree is. We look forward to their excitement again this year when it is finally time to decorate our house.
We hope you all have a wonderful week!
Wednesday, January 3, 2007
We are asking that you all keep Abygail and Madysen Fitterer and their entire family in your thoughts and prayers today. These beautiful twin girls went in for separation surgery this morning. It will be a long and difficult day for their parents, brother, and the entire extended family. You can check for updates on the surgery at: http://www.mayoclinic.org/fitterer-twins/index.html
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