The Buckles Family

We just wanted to give you the details about the show we were involved in that will be airing on Sunday, November 15th.  It will be on at 9 p.m. Eastern time (8 Central), and it is called Conjoined Twins After Separation.  There are two other sets of formerly conjoined twins who were involved, and it should be absolutely fantastic.  We have not had the opportunity to see it yet, so we will be watching it for the first time with all of you.  You'll have to let us know what you think.  You can see the little card we sent out as a reminder over on our other site. 

If that wasn't exciting enough, we have something even bigger coming up!  Erin's service dog, SOLOMON, will be graduating from his training program very soon!!!  That's all Erin can talk about, and she is literally counting down the days until we see him again!  It's soooo cute!  Even though we won't have him with us full time until right before Christmas, this is a gigantic step for him and for us.  We will start working with him often, and he will start staying with us for short visits soon after Thanksgiving.  We can't wait!!!! 

I posted photos from our latest trip to Kennedy Krieger on our Faith, Hope and Joy blog, and while the videos of Erin are still better, I have to say that the pics are pretty cute.  We were able to meet Miss Maryland during therapy one day, and she even let all three girls try on her crown.  I guess you know who we will be cheering for in January during the Miss America pageant!

I will post more new photos soon.  I have so many on my computer, and it really is difficult finding time to edit them and pick the right ones.  I'll work on it.

I'm home with Jade today.  She has had a fever for the past few days, and she's STILL coughing.  I think it's been over 2 months now.  Crazy!  Believe me, we have taken her to the doc numerous times, and it's just a virus.  Oh, so frustrating!  Anyway, hopefully she'll get better soon.

We hope you're having a great week!  Don't forget about Sunday!

First and foremost, we would like to wish our sweet, "baby" girl Taylor a very HAPPY BIRTHDAY!!  She turned 8 years old on Friday.  I know, I can't even believe it either!  She is the most easy-going, sweet tempered, courageous girl we know, and she is wise beyond her years.  We are so proud of her each and every day, and we are absolutely blessed to have her in our lives.  God truly granted us a special gift when he gave us Taylor Joy!!  She was born just 21 minutes shy of Halloween, because I didn't want her to share her birthday with any kind of holiday.  She was two weeks early, and she was a beautiful surprise! 

This year we started out Taylor's birthday in the E.R.  Not a great start to her special day, but true to form, Taylor didn't complain at all.  She had a fever the day before her birthday, so she couldn't go to school.  Thankfully Kevin's mom is in town, so she was able to stay with her for the day so I could actually go to work.  Thank you Jean Jean!!  I'm worried they're going to get a little tired of me missing work!  Anyway, a little after 5 that evening, Taylor started to have intense chest pain, to the point where she was crying hysterically.  I immediately hooked her up to our pulse oximeter (which measures the oxygen saturation in her blood and her heart rate).  Her numbers looked good, except when she would have the pains.  At that point her heart rate would go up, but not to any alarming levels.  I listened to her lungs, and they both sounded clear.  I guess it's a good thing we have so much equipment and knowledge.  We feel prepared for *almost* anything.  I decided to take her to the E.R., along with Jade, while Kevin stayed home with Erin.  Jade has had abdominal pain for 3-4 weeks now, and we are doing everything we can to figure out what is causing it.  We figured we could have them both checked out to avoid another trip in for Jade.  Anyway, after being triaged, we sat in the waiting room for quite a while.  Once we were taken into a room, they ran a few tests on both girls, including blood, urine, and a flu test for Taylor.   Much to my surprise, the flu test came back positive almost immediately!  What?!  We had all three girls vaccinated with the new H1N1 vaccine just the week before!  It had obviously not kicked in yet, and Taylor was exposed before she was protected.  I explained to the doc that Erin was in great danger if she got this flu, and she agreed that we needed to protect her as much as possible.  She prescribed Tamiflu for all three of them, hoping it would help in staving off this illness.  Taylor was quietly reading Harry Potter the entire evening, miserable as she was with her fever.  Taylor was taken for chest x-rays, but everything looked fine with those.  She very patiently waited until Jade was done with all of her tests. 

In the meantime, Jade had to get an I.V., which is usually pretty traumatic for her.  She was extremely brave, though, sitting on my lap while they first inserted the I.V. and then drew blood.  She had to have a CT scan, so she had to drink the contrast solution to help them see all of her organs.  They brought in this GIGANTIC cup, and at first said she had to drink the entire thing!  Seriously, she has never in HER LIFE drank that much in one sitting.  After some careful consideration, they agreed that she only had to drink half of it, which was better but still A LOT!  She was a great sport about it, especially after I told her that the faster she drank it, the faster we could go home.  It was 11 p.m. by this time.  She was finally taken for her CT scan at 11:30, and she was very brave (almost excited).  She knew her sisters have both had these fairly recently.  Jade has had them as well, but she was too young to remember.  Anyway, the scans had to be read at a different hospital, so we didn't get out of there until almost 1 a.m.  The results?  Nothing unusual.  We are still answer-less, and she is still having abdominal pain.  We have now done blood tests (2), urine tests, x-rays, and a CT scan, as well as 3 physical exams by three different docs.  Can you say "Frustrating"?!  We're still working on it!

Anyway, because of the H1N1, all three girls had to stay home until Wednesday.  They were all anxious to get back to school, especially Taylor.  She missed being in school on her birthday, and she was very sad that she couldn't share that with her friends.  She never complained, but we could see it on her face.  Taylor did end up getting a cough, and she had a fever through Monday, but overall the flu didn't hit her too badly.  Luckily Erin and Jade escaped it altogether (knock on wood) this time.  It's not a guarantee that they won't get it at all, but I think they're better protected now, especially since the vaccine has had more time to work.  We will hopefully get the booster in a few weeks, so we will feel a little more confident about their health. 

We celebrated Taylor's birthday on Saturday with her grandma Jean Jean and big brother.  After having cake and then dinner (yes, a little backwards but fun), the girls were able to go out trick or treating for a little while.  We got Taylor a doctor's costume, and it had a mask, so she wasn't spreading germs anywhere.  Around here, everyone puts the candy in the kids' bags, so she never touched anything or anyone.  She was thrilled to be able to go out for a short time, and it was definitely worthwhile.  Erin and Jade had a fantastic time as well.  Jade is no longer scared of the skeleton costumes, which is a relief.  She used to walk around muttering to herself, "it's just a costume, it's just a costume!"  It was very funny, but we didn't want her to be scared.  Erin was a princess this year, and Jade was Scooby Doo.  We recycle costumes around here.  Taylor was Scooby for 2 years in a row, and this was Jade's second year as him as well.  We certainly get our money's worth!  Erin wore a princess dress we've had in their dress-up box, and she loved it.  So did we!  I'll try to get the pictures up soon.

Everyone is finally back in school, and I am back at work.  What a relief!!  The wonderful and amazing people I work for are allowing me to work full days in order to make up for the time I missed.  I just need to reiterate again just how much we love the school and everyone in it!!  I am blessed to be a part of such an outstanding faculty and staff!! 

I have two extremely important posts that I need to write.  Hopefully I will get time soon.  The first post is about our experiences in Baltimore at Kennedy Krieger.  I'm not sure there are even words to express how amazing it was!  The second post is about Erin's service dog, SOLOMON.  We recently were able to spend three days in a row with him, and it was fantastic!!  Erin's excitement about him doubles, triples and quadruples each time we see him.  He will be graduating on November 14th, and we should have him at home with us full time by Christmas!  What a WONDERFUL Christmas present!!!!  We want to thank Terry for bringing him to us each of those three days and for so patiently working with me to teach me how to handle SOLOMON.  We all adore the dog (and Terry too), and we can't believe he's almost ours!  Yay!! 

O.k., more on those two things later.  I have to get our girls ready for bed.  We hope you're having a great week!!  We want to thank everyone for taking the time to stop in and check on us.  Thank you for the wonderful, encouraging comments, and thank you, thank you, thank you for watching Erin's videos on youtube. 

Oh, one last thing:  the new show we are involved in will be airing on TLC on the evening of Sunday, November 15th.  I don't have a time yet, but as soon as we know, I will post it here.  It is about formerly conjoined twins, and we will be in it with 2 other families.  It should be wonderful, and we can't wait to see it!  We want to thank Figure 8 Films for being so great, and for truly caring about our girls!

O.k. now I'm going!  Take care!

First of all, I just wanted to let you know that everyone is doing well.  O.k., well Jade has something going on with her stomach (pain for over a week and a fever today), but no one is REALLY sick (we hope).

The reason I haven't posted updates this time is because we spent all of last week in Baltimore at the Kennedy Krieger Institute.  Erin and Taylor had physical therapy again, and they did fantastic!  In fact, Erin was downright AMAZING!!  I don't have time to write a long update right now, because I have to get ready for work, but I wll post links to two videos I took of Erin on Friday.  You're not going to believe it!  We have a LOT of work ahead of us, but we are definitely on the right track.  O.k., check these out:

Erin walking with braces and no e-stim

Erin walking with just e-stim on her quads and no braces

She is actually able to step forward with her legs.  Her hip flexors are starting to work!!  Her left leg is much better than her right leg at the moment, but we will keep working on it.  Her muscles are weak, but we will be doing a ton of electrical stimulation to build those up.  She is a long way from walking on her own, but we are beyond thrilled that she can voluntarily move those muscles at all.  THANK YOU Miss Robin (and Mr. Scott and Miss Rachel)  for working so hard to get her to this point!!!

O.K., have a great day!  I need to go, but I will update soon to tell you about our week. 

I know, it seems like I dropped off the face of the earth.  Well, for the past week, it has almost felt like it.  I'll try to start at what may be the beginning of our latest craziness.

Two weeks ago today, Erin came home from school with a slight fever.  Now, I wasn't completely surprised, because Jade had been coughing and sporting a low-grade fever for 2 1/2 weeks at that point.  I was not concerned about Erin then, because she had no other symptoms.  We were very vigilant about her chest P.T., cough assist, and nebulizer treatments every day, and she was showing no other signs of illness.  On Friday (Oct. 2) Jade wasn't feeling well, but she had a special event at school to attend.  She was chosen as student of the month for September, and there was a breakfast and awards ceremony for the special students at school that morning.  Way to go Jade!!!!  I told her that we would go to that, and if she still felt sick afterwards, we could go home.  I ended up just staying at school, in their classroom, the rest of the morning.  I had to work at noon anyway, so it would have been silly to drive home.  Jade was a bit clingy, but I was really trying to keep her in school for the day.  I knew she didn't feel great, but she didn't have a fever.  When it was time to take Erin to the nurse to cath her, Jade really wanted to go with us to have her temperature taken.  I thought it was a good idea, because then I could show her she didn't have a fever.  When we arrived at the nurse's office, the nurse took Jade's temp.  It was normal, and I think she was a bit disappointed.  Erin really wanted the nurse to take her temperature as well.  I mean, you can't do something for one and not do it for the other.  Such is the life with twins (or siblings of any age for that matter).  The nurse took Erin's temperature just for "fun", and we were all surprised when she was the one with the fever.  At that time it was 100.7.  She told me to go cath her, and she would retake it when we were done.  Maybe it was just a fluke.  I mean, Erin was acting completely normal and said she felt fine.  Less than 10 minutes later the nurse took her temperature again, and it was even higher (101.4).  We had no choice at that point but to go home.  They aren't taking any chances at schools right now (for great reason).  Erin's teacher, Mrs. B, couldn't believe it when I told her we had to go.  No one would have believed that Erin had a fever if I had not seen it with my own eyes.  Anyway, when we arrived home, that is when Erin started feeling the effects.  She wanted to lie down in bed, which she NEVER wants to do if she is feeling o.k.  She stayed in bed all afternoon, only getting up when we went to get Taylor from school.  Yes, Jade came home with us at noon.  Over the weekend, Erin was up and down with a very low-grade fever, never above 101.  She still wasn't displaying any other symptoms.  I decided to send her to school on Monday, because her temp was only 99 when she woke up.  By the end of the day when we got home, her temperature was 102.2, and I became slightly worried.  Mrs. B asked me at what point do I get really worried, and I explained that I wasn't even close yet.  I mean, we literally have so many pieces of medical equipment at our house it's like a small clinic.  Here is what we have at our immediate disposal:  equipment for chest P.T., cough assist device, nubulizer, pulse oximeter machine, suction device, blood pressure device, and my very own stethescope.  We are very well equiped to monitor our children's health.  When Mrs. B posed the question, I was very confident (even a little cocky) in my answer.  I was certain we were not on the same path as we went down in June.  I mean, gee, the symptoms were not even close, right?  I decided to keep Erin at home on Tuesday, just to be safe.  I thought that with a little rest she would be as good as new on Wednesday.  Hmmmm, I might have been slightly off.  She woke up with a temperature of 100.something and she had a bit of a stuffy nose.  Throughout the day, Erin started to go downhill.  Sometime in the afternoon, Erin said, "Mommy, it's a good thing I didn't go to school today.  I don't feel good at all."  By that evening, she was a little junky sounding, but I couldn't hear it in her chest... yet.  When Erin went to bed, her temp was only 100.7.  I gave her some Motrin, and at the last minute I decided to hook her up to the pulse oximeter.  For those of you who do not have the time to check the link, a pulse oximeter is a device that measures the oxygen saturation in your blood.  Many of you have had this done if you've gone to the doctor or been to the hospital for any reason.  They usually put something on your finger.  Most people have a steady oxygen saturation of 99-100%.  Our docs have said that anything below 92-94 starts to get concerning.  When Erin's alarms went off on that Tuesday night (well, 3:30 a.m.), I ran in to find her saturation level at 84.  Not only that, but her heart rate was in the 160's (normal is 75-100), her respiratory rate was 63 (normal is below 25), and her temperature was 104.5.  OMGoodness!!!  Ummm, where is that panic button?!  I immediately gave her some more Motrin and brought her into my room for a breathing treatment.  I listened to her chest, and I still did not hear any of the usual crackles/wheezes brought on by pneumonia.  Of course, I am not even close to being a doctor, so really that doesn't even count.  I made a frantic call to Erin's pulmonologist, knowing full well that she wouldn't get the message for another 4 hours at least.  I also made another frantic call.  Yes folks, Kevin was out of town when this happened.  He felt completely helpless as I asked him what I should do.  It was a miserable situation for everyone.  We knew I had to take Erin to the hospital; that was a given.  Our dilemma was whether I should wait or take her immediately.  At 4:30 when I took her temperature again, it had actually gone up to 104.8.  HELP!  Thankfully Kevin stayed on the phone with me the entire time, and we decided I had to leave soon.  I called my friend Michelle, who, to her great credit, answered the phone with a friendly, "Good Morning!" (at about 4:50 a.m.).  She readily agreed to come over to get Taylor and Jade ready for school and take them for me.  She said she would be happy to do whatever we needed.  Now, keep in mind that this meant she wasn't able to get her own daughter ready for school that morning.  Michelle, you're an absolute LIFESAVER!!!  Thank you!

By the time I had Erin ready to go and we were in the van, it was 5:50 a.m.  I KNEW if I took her to our local hospital, they would want to fly her to Children's again.  I also knew that I could get her there faster by driving (by the time the local docs checked her out, they called Children's Transport team, and they flew out from D.C. it would be late morning at least).  At this point, if any of you know D.C. traffic, I had one option:  I had to pick up a slug.  For everyone who doesn't know what this is, I know that sounds crazy.  The type of slug I'm talking about is not the one that's slimy and crawls slowly across the ground.  A slug, in this case, is a person who parks their own vehicle in a commuter parking lot and then catches a ride into Washington D.C. with someone else who is driving.  Our HOV lanes in this area require at least 3 people in a vehicle in order to use them.  In MN we called this the Sane Lane.  Anyway, by using the HOV lane, you can literally save yourself hours of commuting time each day.  I had NEVER picked up a slug before, and I was quite nervous to do this, but I knew it was my only option.  I had to get Erin to the hospital quickly, and since Children's is in the middle of D.C., using the HOV lanes was the only way to get there.  So, I pulled up to the line of people and picked up a person headed for the Pentagon.  I told him right off the bat that this was my first time picking up a slug, which probably made him more than a little nervous.  Not to mention that I had my little girl in back hooked up to a pulse oximeter.  Kevin, who does this all the time, said they usually sleep the entire way in, but this gentleman stayed awake.  Thankfully he helped direct me to where I needed to drop him off, and he told me how to get back on the interstate.  We made it to Children's Hospital by 7:15, which is quite amazing considering morning traffic into Washington D.C.

Here is what happened when we got to the hospital:

• Due to her breathing, Erin was immediately taken back to a room when we arrived in the E.R.
• She was given a breathing treatment, and the tell-tale crackling sound associated with pneumonia was detected in her lungs.
• She was taken for a chest x-ray
• The x-ray confirmed pneumonia in her left lung.  It was diffuse, which usually indicates that it is viral.
• Test for H1N1, and I.V. is started.
• Erin was admitted to the hospital and taken to the Respiratory Care Unit (RCU).  She was put on oxygen to assist her breathing.  She was not allowed to eat or drink anything, because she was breathing too fast.  They were worried she would aspirate it and choke.
  
• After 10 hours of really struggling, 2 consults with PICU doctors, and much worrying later, Erin was taken to the Pediatric Intensive Care Unit for closer monitoring.
  
• She stayed in the PICU for the next 24 hours, still on oxygen.
• Results for H1N1 test came back negative.
• Finally moved back to RCU.  Her oxygen saturation levels began to drop again and respiratory rate increased. 
  
• Friday she was on and off oxygen throughout the day/night.
• On Saturday morning, the monitor was not detecting her breathing/heart rate correctly, so it was literally alarming every 30 seconds.  I had to get up to turn it off each time.  I finally asked the nurse to change the settings, but she had to ask the doctor.  The doctor didn't want to change the settings, so I asked her to see if the doctor would like to come in and turn off the alarm each time it beeped.  He came in a short time later and took her off the monitor all together.  He put in the order to spot check her vitals every few hours.
  
• Erin was taken off IV fluids to see how she handled eating and drinking. 
  
• Mrs. B, Erin's teacher, came up to visit.  She brought Taylor, Jade, and her daughter Jesse.  It was so wonderful for her to do that, and we had a really special visit.  I really missed my girls!  Erin loved the company!  THANK YOU, Mrs. B!!!
  
• Erin was put back on I.V. fluids Saturday evening, because she didn't do as well as they had hoped.
• On Sunday morning, Erin was taken off the IV again.  This time she did better.  Her incentive was the fact she was told she could go home if she would eat and drink well.
• Erin was discharged on Sunday afternoon (late).
• We went home to sleep in our own beds, but Erin still wasn't doing great.
• She woke up on Monday with another fever, which made its way up to 102.3.  Ughhh!
• Since it was a holiday, I wasn't able to reach her pediatrician until that evening.  He wanted us to be seen on Tuesday morning.
• We went to see Erin's pulmonologist on Tuesday, who thought she sounded like her lungs were filled with water.  She ordered another chest x-ray.
• The chest x-ray didn't look as bad as she thought it would, so with a list of instructions, we were able to come back home.  We were very close to re-admission.
• Over the next few days, Erin slowly began to improve.  She is now doing pretty well, and we feel like we're on the right track.  Phew!

During most of this, Kevin was trying to get back home.  Thankfully my friends Michelle and Justin were able to take care of Taylor and Jade from Wednesday through Friday.  They had a wonderful time playing with Katelyn and going on outings with their family.  You guys are the BEST!  On Friday evening, the girls went to stay with Kevin's sister where they had a fantastic time playing with their cousins, had a visit from K.J., and enjoyed being with their aunt, uncle and grandma.  We're blessed to have such special people around us to help out.  We were all relieved to finally get home on Sunday, as it was extremely stressful for everyone involved.  Kevin was able to make it home on Monday, and I can't tell you how wonderful it was to see him.  Talk about a sight for sore eyes!  He felt horrible for not being able to come home sooner, but there wasn't much he could do.  We're just happy to have everyone home together now.  We want to thank everyone who helped us out, and we want to thank those who said lots of prayers and left messages of encouragement.  I can't tell you how great it feels to know there are so many people out there who are willing to support us when we need it. 

Thank you again for stopping by to check on us, even after my long absence!  I need to go and give Erin a breathing treatment right now.  Have a great night!

O.k., I really am going to try to do a quick update.  Maybe a list would work best.  Here goes:

1.  Erin is still slowly recovering.  She sounds much better, but she's not 100% yet.

2.  Jade now sounds like Erin did, although she has a much stronger cough than her twin.  She's had a fever for the past 2 days.

3.  I started my new job last week.  I am working part time as a paraprofessional with the Math Specialist at the girls' school.  While working has added quite a bit more stress to our lives, I am thrilled to be at their school, and I'm even happier to be contributing (a very small amount) to our finances.  I love the staff and administration at the school, and I feel very lucky to join their ranks.

4.  We took Erin to the Pulmonologist last week.  Together we came up with a good plan for Erin, and we hope this will keep her out of trouble in the future.

5.  We all got our flu shots.  Taylor was a cool cat, Jade was not thrilled, and Erin was actually excited about the fact that she couldn't feel the injection in her leg. 

6.  School is going wonderfully.  All three girls love it, and they're doing extremely well. 

7.  K.J. is doing great!  He just got a fantastic grade on an English paper, and we're so proud of him!

8.  We will get to see SOLOMON on October 8th, when he will meet us at school for the first time (with students present). 

9.  SOLOMON'S graduation date is November 14th!!  We can't wait!!!

10.  Our Make A Wish trip is planned and booked.  A real vacation with the entire family!!!  Yay!

O.k., I also have to tell you about two amusing things that have happened in the past few days.  Yesterday I was helping in Erin and Jade's classroom at the end of the day.  A little boy was wandering around looking for something.  Here is our exchange:

Me:  Hey N!  What are you looking for?

N:  My water bottle.

Me:  Well, I'll help you look for it.  What does it look like?

N:  Ummm, it's a bottle... and it has water in it.

Me:  Oh, o.k. good.  That was helpful.  Let's go find it!

I had an extremely difficult time not lauging out loud at that one, but he was just so serious.

This one was not amusing when it happened, but I can see the humor in it now.  Jade and I went to get gas today in our van.  I put the nozzle in the tank, started pumping and set the lever so it would pump and shut off by itself.  I was standing right next to it as itpumped, but I was not paying attention to it at all.  All of a sudden gas was gushing out and spraying everywhere, and I was scrambling to shut the pump off.  I was angry that I was covered in gas, but I was also angry at the money I just wasted on the gas all over the van, ground and me.  I grabbed Jade and we went into the station to complain about the malfunctioning pump.  I mean, it's SUPPOSED to turn off by itself!  As I explained to the MAN inside, he proceeded to tell me that the nozzle has two sensors.  He calmly explained, as if he was talking to Jade, that I must not have had the nozzle all the way inside the tank.  O.k., right, because it was, of course, my very FIRST time pumping gas!!  He came out to look at all of the gas on the ground and apologized (although you could tell he didn't really mean it, as he truly thought it was my fault). 

All right, I'm off to bed.  Oh, check out the new photos I posted on our other site.  These are from our trip to the beach.  I also posted pics from the first day of school.  Another cool thing you should check out is another video about our family on the Baltimore Ronald McDonald House website. 

Good night!

The first week of school was an absolute success!!  The girls adore their teachers (so do we!), and we know they're going to have a wonderful year.  Taylor couldn't be happier in Mrs. S's class, and we feel like it's a great fit.  She has a few friends in there, but most of her best friends from last year are in different classes (except for Isaac).  That's o.k., it seems, because they just burn up the phone lines talking to each other after school and on the weekends!  I don't remember ever talking on the phone in 2nd grade!  Can you say social butterfly?!  She is also making some great new friends this year, which is fantastic. 

Erin and Jade couldn't wait for the first day of school.  We were able to meet their teacher the week before school started (we wanted them to be in the same class this year), and we were immediately impressed.  Mrs. B is an outstanding teacher with the greatest personality!  We feel truly blessed that our girls were placed in her class.  I was excited when she asked me if I would like to help out in the classroom... OF COURSE I would!  I was in there helping her and all of the students (not just Erin and Jade), and it was so much fun to get to know everyone.  They have a great class!  I helped out all week, and I found myself wishing I could get a job working in their classroom full-time, but since there isn't an opening for that, I am getting a job at their school doing something else!  Yay!  I will be starting on Wednesday (working part-time), and I am so excited.  I will still be able to volunteer in the girls' classrooms in the mornings and actually work (earning money) in the afternoons.  Life is good!  It will be a relief to be up at the school in case something happens with the girls (especially Erin).  Did I mention that I will actually have an income?!  O.k., while it won't be a lot, it will be something, and right now any amount will help.  I wasn't sure I would be able to work this year, because we still have to go to Baltimore for a week at a time for therapy, and we will also miss a week for Taylor's Make A Wish trip.  When I was talking to the principal about it, she was not concerned.  In her words, she said, "Life happens".  Wow, that's amazing!  Well, she really is an amazing and wonderful person, and I couldn't be happier that we chose this school.  Thank you, K!

I mentioned in my last post that Erin had some chest congestion we were trying to combat.  Well, everything we were doing didn't seem good enough, because she continued to get worse last week.  We were doing nebulizer treatments and inhalers several times each day, and we were using our cough assist machine to try to help Erin have a more effective cough.  None of it seemed to be working, and her little body was getting worn down.  By Friday I knew we were in for a hospital visit, and of course it would come over the weekend.  She hadn't had a fever up to that point, but I just had a feeling it was coming.  In the early hours of Saturday morning, Erin spiked a fever of 103 degrees, and she was struggling to breath well.  Her respiratory rate was up, which meant her heart rate was up as well.  Kevin and I were both able to take her to the hospital this time (thank you K.J. for taking care of Taylor and Jade), and we went directly to Children's, bypassing the possibility of another helicopter ride.  Erin's temperature was back up to 103 by the time we got to the hospital, her respiratory rate was between 70 and 90 (breaths per minute), and her heart rate topped out in the 190's.  O.k., just to take a moment to help you all understand:  count how many breaths you take in a minute.  Now try to take 90 breaths in one minute.  Imagine what it would feel like with a ton of junk in your chest.  That's how Erin was.  My heart rate goes up just thinking about it.  While we were being triaged, they wrote down "Respiratory Distress" on her chart -- just giving it that title made me feel distressed!  We thought for sure that she was going to be admitted again, just like the situation in June.  After Motrin, a chest x-ray, two breathing treatments (the second one was high dose), a dose of oral steroids, a urinalysis (to make sure she didn't have a UTI), a test for H1N1, a prescription for antibiotics and another dose of steroids, and a lot of observation, Erin was finally allowed to go home.  She was breathing better at that point, her oxygen saturation levels were fairly good, her heart rate and respiratory rates had come down a little, and listening to her breath didn't cause us to fear for her life.  We were exhausted but relieved that she seemed to be on the right track.  We made it home at about 11:45 p.m.  Whew!  I really dislike days like those!  Anyway, Erin seems to be holding steady.  She is still exhausted, and her body is still worn out.  She tried to go to school for a little while today, but she didn't do very well.  We are scheduled to see a pulmonologist very soon to discuss this situation and come up with a plan on how to get a handle on these new issues.  I'm not going to lie, we're pretty concerned about the upcoming winter and flu season.  It could be bad.  While we can't keep our children in a bubble, sometimes I'd really like to!

I need to get some sleep now, since I haven't gotten much lately.  We hope you all have a fantastic week!  Thank you for sticking with us and continuing to check in on our family.  It means more to us than you could ever know!

Oh, really quick... I posted a new video of Erin on youtube.  She has mastered the ability to transfer independently, and I caught one of her first transfers on video.  It was from my phone, so the quality isn't the best, but you can definitely see how proud she is.  Please take a minute to check it out.

We had the most amazing week at the beach!  EVER!!  We would like to thank Terry and Ed from the bottom of our hearts for so graciously allowing us to use their wonderful house near the beach!  We could never truly express our immense gratitude for their fantastic gift, and we hope they understand how much it means to us.

All three girls were enthralled with the ocean.  They had so much fun running and jumping in the waves (well, I was doing the running and jumping with Erin in my arms, but she still loved it).  Taylor kept wanting to go swimming in the ocean and couldn't understand why I wouldn't let her.  Well, she didn't understand until she had been knocked over by a few waves and struggled to keep her footing with all of the others.  Maybe when she's older and stronger.  They were all content to play for hours in the water each day.  In the mid-afternoon, we headed back to the house for a break, and then we went to the pool to play for a few more hours.  It was perfect.  Seriously.  I thought they might be more interested in building sand castles, but they are all like me and wanted to be in the water instead.  We did bring at least half of the sand from the beach home with us each day, and our van turned into a sandbox, but what could be more fun than that?!  O.k., I can think of a few things, but we really did have the best time!  Oh, yes of course I took a few hundred pictures, and I will add them to the other photos I need to post.  Once the girls are in school, I'll just have to take a morning and post pictures. 

Anyway, all of the kids start school on the 8th.  The girls are thrilled and can't wait to start.  I think K.J. is excited to be senior (yes, I did say SENIOR), and he's probably even more excited to be done with this year.  I used to teach seniors, and I swear they came in on the first day of school ready to be done.  It's an exciting year for everyone.  We can't believe Erin and Jade are going to be in Kindergarten.  I think most parents who have children with medical problems, especially those who find out while they're still in the womb, never allow themselves to imagine the future.  It's difficult to picture your child starting school when you don't even know if they are going to survive birth.  Each new milestone is another miracle to us, and we're absolutely blessed to experience these with our daughters.  Taylor can't wait to start 2nd grade, and more importantly (to her), she can't wait to see her friends!  It should be a fun and exciting year!

Well, along with the good sometimes comes the bad.  Erin has gotten increasingly junky in her chest this week, and we are doing everything possible to prevent it from getting worse.  We are doing nebulizer treatments with her, inhalers, the cough assist device, and we're waiting for an appointment to see a pulmonologist.  She was originally scheduled to be seen in late October (the appointment was made in June, and that was the EARLIEST she could be seen - What??).  Anyway, her pediatrician is working on it right now.  She needs to be seen before flu season begins, because it's supposed to be pretty bad this year.  If she got sick in June with pneumonia, what is going to happen this winter?  We need to have a plan in place now. 

O.k., so as if that hasn't been enough fun this week, Taylor has been struggling with lower abdominal pain for the past few days.  She has not been eating or sleeping (which means we're not either), and she has a few other symptoms that had us concerned.  I spoke to her pediatrician yesterday, and he wanted us to bring her in today.  Well, her pain increased last night, and we felt we just couldn't wait.  I took her to the E.R. at 9 p.m. and after many tests, we arrived home at about 2 a.m.  They checked urine, blood, and did a CT scan with contrast.  It was concluded that Taylor has a bladder infection, or should I say a breakthrough bladder infection because she is already on low dose antibiotics in order to prevent UTI's.  This must be some nasty bacteria!  I guess we will see when it grows out in culture, but for now she is on a stronger antibiotic and Tylenol 3 for pain.  Poor girl!  She was such a trooper, though, and so very brave.   We hope she recovers quickly!

I need to go for now, but hopefully I can update again soon.  My sister leaves for Iraq again today.  This time she is moving there indefinitely, and we're not sure when we'll see her next.  Please keep her in your thoughts and prayers.

Have a great Wednesday!

Today is Conjoined Twins Day.  It is a day to celebrate and remember all conjoined twins.  Most people don't have any kind of understanding of what it means to be given the news that the beautiful, precious babies you are carrying are conjoined.  They don't know the instant fear that grips your heart, and they can't comprehend the worry that is a constant companion throughout each day of your pregnancy.  Did you know that only 1 in 200,000 LIVE births is a set of conjoined twins (most sets of conjoined twins don't make it to birth).  Of those that are born alive, two-thirds of them don't make it past the first 24 hours.  Of the sets that survive past the first 24 hours, only a quarter of them will make it to separation surgery and beyond.  A very small number of conjoined twins survive but cannot be separated, and they live their lives connected to their twin.  When you look at those statistics, the fact that our girls are still with us is an absolute miracle!  We take this day to remember all of the amazing babies who are no longer in the arms of their parents.  These families will always ache for their children, but they are forever thankful for the time they were given with their children, whether it was just the pregnancy, or if they had the opportunity to hold them for minutes, hours, or even a few days.  Our thoughts and prayers are always with these amazing families but especially today.  We also take today to celebrate the few sets of twins who do survive.  We are thankful for the blessing, and we want to share that blessing with you.  It is only through God's Grace that these children are here, and we know that they are here to teach us something, just as the other sets had something to teach us before going to be with Him.  We hope you take some time today to tell someone else about conjoined twins.  Please remember all of the families who miss their children each minute of every day.  It is agony to lose one child, but they have lost two children at the same time.  We also want to thank all of you for your continued support throughout our journey!  We could never truly express our tremendous gratitude for this opportunity to have you in our lives, even if it is only through our website.  Thank you from the bottom of our hearts!  For those of you who would like to participate in this day, we encourage you to release balloons in remembrance of all of the babies with wings.  Our girls love to send balloons to the babies in Heaven!  If you do release balloons, take pictures and send them to us.  We will post them on our site for everyone to see!

We had a very exciting event this morning that we would like to share.  I've mentioned before that Keira, the 14 year old girl from Canada, was here visiting us.  Last year she decided she wanted to raise money to donate for SOLOMON.  She held raffles, donated her babysitting money, sold her Irish dancing shoes, had garage sales....  Did I mention that she was only 13 years old when she did all of that?!  When she first contacted us and said she wanted to raise money, I thought she would send a few dollars.  Keira raised over $3,000 (U.S.) to donate!!  Because she worked so hard, and she is such a remarkable young girl, her mom brought her here to give us the money in person.  And because we were so amazed by her, we wanted her to be honored in a special way.  She doesn't quite realize what an outstanding thing she has done, but all of the adults know just how fantastic this really is.  After talking to Terry Henry from paws4people, he came up with something that seemed very fitting.  I definitely wanted her to be able to meet SOLOMON and to see the special bond between Erin and her dog.  I felt it was important for Keira to see how all of her hard work would help our little girl.   Paws4people arranged for the presentation of Keira's donation to take place at the Canadian Embassy in Washington D.C.  It was very exciting to go to the Embassy (most of us have never been to an Embassy before), and we were thrilled that they were willing to do this for Keira.  The Canadian Broadcasting Company (CBC) was there to film everything, and they interviewed everyone afterwards.  Keira was quite nervous once she was told she would have to speak in front of everyone AND a camera, but she did an absolutely beautiful job.  I got up to speak after her, and I was emotional (of course).  O.k., so it's not difficult to get me choked up, but this was truly something special for our family, and I had a hard time holding back the tears.  Keira presented the money (she had all of it in cash) to Erin.  When Erin peeked into the envelope, the look on her face was priceless!  She actually really wanted to keep the envelope, so Kevin had to ask someone at the Embassy for another one so we could give the money to paws4people.  We will put the one from Keira into Erin's scrapbook so she can keep it forever!  After the presentation, we were able to take pictures with everyone.  We even went outside to this beautiful area on the roof of the Embassy.  It had an amazing view of the U.S. Capitol building.  We were able to take some photos with that in the background.  Too cool.  For the girls, the best parts of today were playing with Keira again and hanging out with SOLOMON.  I guess you can't ask for much more than that!  Keira is absolutely the sweetest girl we've ever met, and we know her mom is extremely proud of her.  We are blessed to have them in our lives now, and we know we have forged a lifelong friendship.  Unfortunately, for those of you who have ever been to D.C. in the summer, you know that it was extremely hot and terribly humid today.  We went outside after the event to play in a little park, but Erin quickly became overheated.  She does not tolerate the heat well at all.  Because of her spinal cord injury, Erin cannot regulate her body temperature and she always overheats quickly.  While our girls love to be outside, it is just not possible to do that here for any length of time in the summer.  Also, we knew we would have to battle traffic on the way home, which could take several hours on a Friday.  We live along one of the worst traffic corridors in the country, and on Fridays in the summer everyone heads out to the beaches, which just happens to be the same interstate we travel.  Lovely!  We very sadly said goodbye to Keira and Joan, hoping we can see them again soon.  We are so thankful for what Keira has done for Erin, and she will be in our hearts forever.  She is an amazing young girl who is a shining example for people of all ages.  She has shown us that you can accomplish anything you put your mind to.  Thank you Keira!!!

Oh, we have been soooooo busy!  I can't even catch my breath, it's been such a whirlwind, especially these past few days.  It's getting late, and I'm pretty tired, so I'll just do a quick update to give you the rundown.

Yesterday we had the opportunity to meet a 14 year old girl named Keira and her mom Joan.  They are from Canada.  Keira has a keen interest in conjoined twins, and she actually decided to raise money over this past year in order to help donate money for SOLOMON.  For those of you who may not know, SOLOMON is the service dog (in training) who will soon become Erin's constant companion.  Anyway, Keira is such an amazing girl, and she did such an outstanding job with her fundraisers, that her mom decided to bring her to the U.S. this summer to meet us and the Herrin family.  We are absolutely honored that Keira would do something so very special for us, and we were blessed to spend the afternoon with them yesterday.  She is such a sweet girl, and our girls absolutely adored her!  Jade decided that she is her very best friend, and Erin said that yesterday was "the best day EVER!".  We will also get to see her tomorrow, so you know that we are looking forward to that as well.

Today we spent the ENTIRE day being filmed for the new documentary for TLC.  This one is about the lives of formerly conjoined twins.  There are two other families involved, although we haven't gotten to meet either one.  As of right now, it is set to air on November 22nd.  We will remind you as the date approaches, and we will also let you know if it changes (as they often do).  The best part about our day was the fact that we were able to spend the first half with SOLOMON, Terry, and Kyria (from paws4people).  Erin was ecstatic to see SOLOMON, although she had a hard time warming up in front of the camera.  Eventually she overcame her shyness, and she gave some great commands, which SOLOMON obeyed.  It was exciting to see, and Terry and Kyria were quite pleased with her progress.  We even took him up to the girls' school to walk around.  This gave him the opportunity to get used to the environment without the chaos of students around.  Once school starts we will take him up again, as he needs to get accustomed to the noise and constant activity of a kindergarten classroom.  Everyone at the school was extremely accommodating and did everything possible to make our visit go smoothly.  The principal is wonderful, and we just love her!  We want to thank everyone there for all of your help.  As SOLOMON'S transition time nears, we are all very excited.  The only member of our family who is not the least bit excited is our cat, Ninja!  SOLOMON was very interested in him, but he wanted NO part of it.  He actually hissed at the dog.  Poor thing!  I think it's going to take a while for them to get used to each other.  Anyway, the girls thought it was hilarious.  Oh, we also got to play with the two new puppies Kyria just got for the program.  I won't tell you their names yet, because Kyria hasn't revealed them to the public. However, I can tell you that they are absolutely adorable, and we all fell in love with them!!  Once I have time to post pictures, I'll upload some from today.

Tomorrow is Conjoined Twins Day.  Mark it on your calenders!  On this day each year we remember all of the sets of conjoined twins who don't survive.  We think about their families and the heartache they experience.  We also celebrate the conjoined twins who do survive.  Each set, whether they have feet or wings, are absolute miracles, and we are blessed to be a part of this bigger "family".  If you would like to celebrate it with us, we always release balloons for "all the babies in heaven" (as our girls always say).  If you do a balloon release, take some pictures and send them to us.  I will try to post them (along with ours) on our website. 

O.k., I have to go.  We have an exciting day tomorrow, and I am exhausted from today.  We hope you're having a great week!

Jade and Erin usually come up with the cutest things when they are talking, and they're not even trying to be funny.  Here are a few of my favorites (Jade has more of them, I'm not sure why.  Maybe it's because she is constantly talking!)

Jade:

• Naked Feet (bare feet)
• Long-legged Daddy (Daddy long legs spider)
• Iceberg (ice cube)
• Bunder (Thunder -- unfortunately she doesn't say this anymore.  I wish she did)
• Yesterday she asked Taylor if she could tell her a secret.  She then told Taylor that "this time it won't be in Japanese".

Erin:

• Cabinet (cabin).  We all loved this one.  In fact, we called it the cabinet the entire time we were there.

Kevin and I are constantly saying that we need to write down the funny things they say right after it happens, because we usually forget what it was.  Maybe we need to keep a notebook just for that.  I used to write Taylor's down, and I love looking back at the things she said.

I've just realized that this month is going to FLY by.  We have quite a few things packed into August, and it feels like September is going to be here before we know it.  I'm definitely not complaining, because most of these "things" are exciting or fun-filled, but it also means that I only have my girls at home with me full time for one more month.   Yes, school starts here in Virginia exactly one month from today.  Taylor and Erin are extremely excited, and I think Jade would be just as happy staying home with me.  Yes, we're still dealing with her separation anxiety, but hopefully she can overcome it soon.  I think she'll be thrilled once we meet her teacher and see her classroom.  Not to mention the fact that I'll be at school with them quite often, so she won't really have time to miss me.  Once we have SOLOMON (sometime this Fall), I will need to be there with him daily to help take care of his needs.  Also, once the sub list opens up again, I am hoping to substitute teach there on a regular basis.  It will be far different from teaching high school students, but it should be fun!  In the meantime, I will try to volunteer in the girls' classrooms as often as they let me. 

O.k., now I want to tell you about something that happened last week with Erin.  I tweeted about it at the time, so if any of you follow us on Twitter, you will now get the details.  Last Sunday the girls and I were playing around, and I picked Erin up and was holding her underneath her arms.  She was facing away from me, and I was holding her so her feet were touching the ground.  I often do this with her, because I love to see what she can do when I tell her to straighten her legs.  Erin can actually straighten her legs voluntarily (meaning she's doing it herself, and it's not just a reflex or accidental tone kicking in).  On Sunday she did this, and as I often do when she straightens her legs, I let her legs hold some of her weight.  As I'm trying to help you visualize this, I don't want you to picture Erin standing all by herself, because she certainly cannot do that, but the fact that she can straighten her legs out at all is HUGE to us.  Anyway, she can't keep her legs straight for very long before her muscles get tired and give out, but we usually give her a little break and ask her to do it again.  On Sunday, after she straightened her legs, I was still holding her up in the same position:  legs dangling below her, with her feet just touching the floor.  All of a sudden, Erin's legs started stepping.  Yes, you did read that correctly!  Erin's legs took four steps in a row, without hesitation!  Again, I was holding up all of her weight, but her legs were taking the steps.  I was screaming, "YOU'RE WALKING!  ERIN, YOU'RE WALKING!"  I know it might sound strange to you that I describe it like her legs are their own separate entity, but I don't know if Erin was controlling them or if our training from the litegait was kicking in and her muscles were doing what they have been taught to do.  Because Erin knows how badly we want her to be able to walk, she told me that she made her legs do that, but we just don't know.  We'd love to think that she did!  Anyway, it was just wonderful and absolutely amazing to watch her legs taking four steps!  She was so very proud and excited, and I know it's things like this that give her hope that she will walk someday.  Because we KNOW she will.  It's things like that little miracle that make all of our hard work and the trips to Baltimore absolutely worth it.  And it makes us want to work harder!  As my sister stated, "The journey of a thousand miles begins with a single step.  Erin has already taken four!"

On Monday, my most wonderful husband (who must love me an awful lot) volunteered to get up with Taylor at the crack of dawn to take her to Children's Hospital for a follow-up visit with her orthopedic surgeon.  Even though her appointment time was 8 a.m., they still ended up waiting almost two hours to see her.  Crazy, I know!  She said things look pretty good, but she wants Taylor to do exercises often to try to strengthen the muscles in her right leg and foot.  As soon as they got back from that appointment, I grabbed Taylor and Erin, and we were off to an appointment with their orthotist (person who makes all of their braces for legs and torso).  Jade was able to stay home with daddy and have an exciting afternoon with him.  Taylor's braces for her right foot needed some repairs and adjustments.  We're a little hard on them sometimes!  That part didn't take long, and then Erin was casted for a new TLSO (brace for her torso) and she was casted for new AFO's (braces for her feet).   It took a little bit of time, but Erin is so patient and good.  She didn't complain at all!  The best part for her is being able to choose the new designs (i.e. colors, patterns, etc).  She was very excited to pick them out this time.  I'll be sure to post pictures as soon as we get them.

On Tuesday our friends Michelle and Katelyn came over for a visit.  We haven't seen them since they came to visit Erin in the hospital in June.  It was a fun "reunion" for the girls, and they enjoyed their afternoon of play.  While they were at our house, Taylor lost her first top front tooth.  Well, I helped a little.  It was very loose, and it needed to come out, because the new tooth was already coming in behind it.  So, I grabbed a paper towel and pulled it out.  I made sure she was not in pain, and I watched her eyes the whole time.  She was very calm, and she said it didn't hurt at all.  Taylor was ecstatic when I got the tooth out, and she couldn't wait to see what the tooth fairy would leave.  In fact, she was so excited about the tooth fairy that she didn't sleep most of the night.  Now that was FUN!

On Wednesday we had a picnic at a local park with Michelle, Katelyn, and another friend Hailey.  It was pretty hot out, so we could only play for an hour after we ate our lunch.  Erin has a very tough time in the heat.  Because of her spinal cord injury, she cannot control her body temperature, and she overheats quickly.  On that day, everyone was hot, so it was an easy decision.  It was fun to get out and play for a little while though. 

O.k., so I mentioned that August is a busy month for us.  Here are a few of the things we have going on. 

1.  Erin has an MRI on her spinal cord coming up.  The neurosurgeon just wants to see what is going on with it. 

2.  We have a picnic for Kevin's work.  The girls always love going to this.

3.  We get to meet Keira, a fourteen year old girl from Canada who worked extremely hard to raise money for Erin's service dog.  Oh, did I mention that she raised over $4,000!!!!  Wow, that is amazing for anyone, but for someone that age... it's beyond outstanding!  We have never met her, but she chose to do this for Erin, and I don't think she even realizes what a big deal it is!  We will have the opportunity to spend time with Keira and her mom, and we are trying to set up an event where she can present the money directly to Paws4People.  She will get to meet SOLOMON, and she will see Erin and SOLOMON together.  Hopefully she will understand what a wonderful thing she has done for our daughter.

4.  We will be doing some filming for the new documentary that is being made about formerly conjoined twins.  It should air in November, but I'll let you know for sure when the date is set.  It has already been moved back from August, so it could happen again.

5.  And last but not least, we will be able to spend a week at the beach thanks to our very special friend Terry from Children's Hospital.  "Grandma Terry", as the girls call her, has been wonderful to our family since our very first visit to the hospital in March of 2004.  We had some meetings about Erin and Jade concerning the upcoming separation surgery, and Terry volunteered to take care of our girls.  As soon as Taylor saw her, she called her Grandma (even though she certainly doesn't look like a grandma), and a fantastic bond was forged.  We just love Terry!  She has done more for our family than you could even imagine, and we couldn't be more thankful.  She has offered to let us use their house near the beach, and we very gratefully accepted.  The girls cannot wait!!  They have been asking to go to the beach for a long time, and now their wish will come true.  It will be so much fun, and we are so thankful!  Thank you Terry and Ed!  We love you both!

O.k., another long post and still no new pictures up.  I'll do my best to get some up later today (or this evening).  Have a wonderful weekend!!

O.k., so the main reason that I've gotten so far behind in updating is the fact that we spent the past 2 1/2 weeks in Minnesota.  Most of my family lives there, and we had a few big events to plan/attend.  After getting home from Baltimore on Friday, July 10th, we spent the weekend repacking to leave on Monday, July 13th.  Our summer has literally been one big thing after another... away from home.  The week after the girls got out of school, Erin was in the hospital.  The next two weeks were spent in Baltimore at KKI, and the 2 1/2 weeks after that we were in MN.  It's been absolutely crazy, but (for the most part) fun.

Because I could write for days about all of the things we did on our trip, I may just list our activities, and if anyone wants me to elaborate on any of them, please let me know. 

1.  We arrived to find that my brother Mike built a beautiful ramp for Erin to get in and out of my parents' house.  He also made a small ramp from their back door to the deck, which is a small step out for us, but too much for the chair.  Thanks big brother!!  Erin LOVED it!  We brought her powerchair, and while she has always enjoyed being in MN, this time it was like she was seeing it for the first time.  It was a whole new world that she could get around in.  Best idea ever!  (I don't think I'm doing very well with listing things!)

2.  We spent time with our entire family, including my sister who was in Iraq (and who is now moving back to Iraq for good).  Yes, you read that correctly.  She has given up her house, job, vehicle, possessions, and she is going back to Iraq to teach English at the University.  We're very proud of her (and always worried)!

3.  We went to stay at a cabin on a lake north of Milacs (for those of you who know what I'm talking about).  We stayed at the same cabin two years ago, and the girls could hardly contain their excitement.  They remembered fishing, swimming, running around catching frogs, etc.  The only problem was that it was 58 degrees, windy, cloudy, and downright cold.  We only brought one warm outfit for each; just let me say that they got a lot of use!  However, despite the cold, the girls did swim (while I watched them wearing jeans, a long sleeved shirt, and a sweatshirt).  Believe me, it was in very short bursts, but they weren't about to let the cold spoil their fun. 

4.  While up at the cabin, we joined my dad's entire family for a giant family reunion.  It took place at my aunt's cabin just a few miles away.  We had an amazing time, reconnecting with aunts, uncles, cousins (and dogs).  So much fun! 

5.  While at the family reunion, Taylor, Jade AND Erin all went innertubing behind the speedboat.  I sat in the boat with tears streaming down my face, watching our twins doing something that I never thought they would do.  Oh, and I took about a million pictures of them doing it!  You will see them soon (relatively speaking).  I want to thank my sister for riding with Erin (Erin's wish), and for giving her that opportunity.  Erin wanted to do it by herself, like her sisters, but it just was not safe.  Maybe someday.

6.  Here are a few of the things we did at the reunion:

     -  Ate

     -  Went on canoe rides

     -  Jumped on the trampoline

     -  Ate

     -  Played in a very competitive bocce ball tournament (seriously).  We took 2nd place :0(

     -  Sat around talking to everyone (while we ate)

     -  Went swimming (just the girls)

     -  Went innertubing (again, just the girls)

     -  The girls hung out with their cousins and had a GREAT time

     -  Had a bonfire, roasted marshmallows, made s'mores, and ate.

     -  Rumor had it that there were games of dice and 31 after we left in the evenings. 

     -  Oh, did I mention that we also ate?!

** I guess you can see that there was definitely enough food to go around. 

7.  Because the weather was so cold up until our last day of the family reunion, the wonderful people who own the cabin we stayed in offered to let us have it for an extra day free of charge.  What a special treat!  It had warmed up to the mid-60's by then, a virtual heat wave.

8.  The entire week after returning from our family reunion was spent preparing for my parents' 50th wedding anniversary party.  Their actual anniversary isn't until August 22nd, but they will be traveling during that time, and it worked out best for all of us.  The pressure was on to throw a wonderful party, and we definitely did not want to let our parents down.  They have done so much for all of us during our lives, and we wanted to show them how much we appreciate them and their amazing marriage.  Kevin created an outstanding DVD with music and pictures from throughout their lives.  My family loved it, and we absolutely appreciate the many hours he put into perfecting his project.  Thank you, Sweetheart!

9.  My nephew, Nick, traveled from Phoenix for the big event.  He is my sister's son, and we haven't seen him since right after the girls were separated.  We also were able to see our other nieces and nephews, always the best part of the trip.  Our nephew Jesse is getting married in October, and we won't be able to return for the wedding, so we tried to spend some quality time with him and his beautiful fiance, Stacy.

10.  Saturday, July 25th was the big party.  We went up early to decorate and prepare the food.  The party was a complete success, and my parents were extremely happy!  Yay! 

11.  On Sunday after church, my sister spoke about her experiences in Iraq and talked about the reasons why it is so important for her to go back.  I videotaped the presentation, and I'm sure it will be wonderful if you don't mind a shaky camera from having to reach down to pick things up off the floor or quiet side conversations where I tell the girls to be quiet as they ask how to spell different words.  It may prove to be quite amusing, although I'm not sure that's what my sister was aiming for.

12.  Our last week was spent visiting with family, with a slight deviation on Tuesday.  Mid-morning on Tuesday, as we were waiting for my cousin (who is a pediatrician) to arrive with her children, Erin injured her foot.  At the time she couldn't (or wouldn't) tell me what happened, but it was pretty banged up.  Because I didn't see the way in which the injury occurred, I was more than a little worried that her foot could be broken.  It was swollen all over, and she had some abrasions on her toes and her heel.  It wasn't looking good for the home team!  I knew what our pediatrician would say, but I waited to see what Jessica would say once she saw it.  I mean, I am certainly not a doctor, so it was POSSIBLE that she would look at it and say it was fine.  Of course, if I were a betting woman, which I am NOT, I would have put my money on the other horse.  She agreed with me that it should be x-rayed, and she actually called a friend of hers who works at a fairly local clinic, and she arranged for us to be seen that afternoon.  Thanks Jess!!  Without you, we would have spent the afternoon and evening in a waiting room at the E.R.  By the way, I did find out what happened.  Once I reassured Erin that I was not going to be upset, she told me the tale.  To make a long story short, her foot got caught between her powerchair and the wall.  She tried everything to get it out EXCEPT for backing her chair up.  Oh well.  It turned out that her foot was fine.  She had some scrapes, but there were no fractures.  Thank goodness.  Disaster averted once again!

We arrived home on Friday afternoon.  Let me just say that going through airport security with a little girl in a wheelchair and one with a brace that is too difficult to take off is very interesting (and time consuming).  They pretty much unpacked two of our bags, looking through all of our medical equipment, powerchair battery charger, medicine, etc.  We had to be wanded, and they had to test Erin's chair and Taylor's brace for explosives.  Yep, I did say explosives.  I do appreciate the fact that they are thorough, however, and it made me feel very safe.  Erin's powerchair did end up having a piece broken off during transit, but the airline is doing everything they can to get it fixed in a timely manner.  All in all, it was a great trip, and we're so thankful to my parents for making it happen.  It was wonderful to spend a lot of time with my brothers, Bruce and Mike, and their families, as well as my sister and her son.  It means so much to us, and we cherish these trips.  We really missed my nephew Jon, who is in the Middle East, flying missions into Iraq.  We hope to see him (and his fiance) very soon.

O.k., so I clearly do not have a firm grasp on the concept of lists, but I just had too much to say.  Thank you for taking the time to read this, and as always, thank you for caring about our family!!

I just wanted to let you know that I posted a few photos from Erin's recent hospital stay on our other site.  Please check out http://faithhopeandjoy.blogspot.com  to see them.  I was only able to upload a few today, and I will try to finish posting them this weekend.  These are actually from the end of her stay when she started to feel a little better.  The pics from her helicopter ride and first few days will be coming soon.  I also have many more from our latest adventures to catch up on.  One day at a time, right?!

Everyone here is doing extremely well.  The girls are enjoying their summer, playing outside and sleeping in.  Oh, we received word that Taylor has been approved for her wish from Make A Wish.  We will be going to Disney World!!!!!  Wow, that is sooo exciting!  We can't wait!  We'll let you know once we have more information, but we do feel absolutely blessed that our family can take some time together, and our kids can just be kids for a week.  Thank you MAW!

We hope you have a great week. 

Wow, I am having a serious problem keeping up with our blog!  I want to apologize to those of you who faithfully check our site daily or even weekly, because I know I've been letting you down.  You probably don't even check our site very often anymore, because I've been an absentee blogger!!  Well, all I can say is that I'll keep trying, and maybe I can get my act together enough to update more often.  Now, in my defense, we have been EXTREMELY busy this summer!  However, I know that you're all patiently waiting to read about our adventures, so I'll try to get you caught up without writing a novel.

My last update described our very frightening experiences with Erin being flown from our local hospital to Children's National Medical Center with pneumonia.  She ended up being at Children's from Tuesday through Friday evening, when she was discharged.  The doctors and nurses took excellent care of her, and we knew she was in good hands.  I think she had the very best room in the entire hospital: it was HUGE, a corner room, and had a beautiful view... all great things when you have to be there for a while (not that I think a week is "a while", because it's really not).  Erin had respiratory techs coming in every 2-4 hours to do breathing treatments with her and to do chest PT.  They taught me how to do it...  I'm not going to lie to you, it's not my favorite thing!  They tried a machine called "The Vest", which basically vibrates around her chest and back to break up the secretions in her lungs.  The problem with that is the fact that Erin is still not able to cough up the junk after it is broken up.  We met with two Pulmonologists and discussed our new protocol for Erin.  They were extremely helpful.  They want to see her every six months, so we will now stay on top of any lung issues.  What a relief!  The best part of Erin's hospital stay happened the day after she was admitted.  Mr. Terry brought SOLOMON up to see Erin!  It was fantastic!!  We needed special clearance, so I definitely need to thank everyone (Terry O., Nadia, Katie, etc) for putting forth the extra effort to make that possible.  Erin literally counted down the hours and minutes until her dog was there for the visit.  I can't even describe how amazing it was when SOLOMON walked through the door of her room.  It was like he had been given a command, because he went directly over to the bed, put his paws up and just nuzzled his head into Erin.  He gave her lots of kisses, and she was absolutely THRILLED to see him.  Everyone in the room was in awe of the special bond these two share.  Thank you Terry, for making the special trip in to D.C. to brighten Erin's day and help her to feel better.  It made a world of difference!  Erin spent a lot of time petting SOLOMON and showing him her stuffed dog who shares his name.  Because she was so sick, she tired out quickly and had to lie down.  When she did this, SOLOMON got up on the bed with her and snuggled right in.  I took the greatest pictures -- it was absolutely adorable! 

To make something great even better, that very same day, Erin's friend Katelyn (and her parents) came up for a visit as well.  Katelyn had a procedure herself that morning, and she came up to see Erin when she was done.  After Erin had rested from her visit with SOLOMON, she perked up again for a little while and played Candyland with Katelyn and Jade.  It was so nice to see her smile, especially knowing how miserable she still was.  We want to thank Michelle and Justin for braving the rush hour traffic out of D.C. after staying for a great visit!  We truly treasure your friendship!

So, by Friday Erin's respiratory rate had come down from 70 to 30, and her heart rate came down from 170 to the 90's.  Phew!  Of course, she had a few scary dips with her oxygen levels, and her heart rate went from too high to too low at times, but she slowly recovered.  We went home with her still on steroids, antibiotics and doing breathing treatments every 4 hours.  That's not bad at all.  I want to thank my truly wonderful husband for working so hard to make it as easy as possible for me to stay in the hospital with Erin.  The week she was in the hospital was a very busy one for him at work, but he made a lot of sacrifices in order to bring Taylor and Jade up and spend his days with us there.  He also has every desire to spend nights up there too, but I just couldn't bring myself to leave her.  I'm so sorry, honey, and I promise you that next time one of our girls is in the hospital (unfortunately we know it will happen), you can stay for some of the nights as well.  Thank you for allowing me to be selfish during that time. 

After a quick turn-around and much debate, we left for our scheduled trip to Baltimore on Sunday afternoon.  We weren't sure Erin was quite ready for two weeks of intense physical therapy, but we also knew that they would take it easy on her if she was tired out, and Taylor really NEEDED the therapy.  Our first day consisted of appointments with a nurse who specializes in spinal cord injuries.  She just makes sure the girls have all of the equipment they need and they are getting the proper care between our KKI appointments.  Our PT and OT appointments that day were just evaluations to see how Erin and Taylor are doing, if they have progressed, and we discussed our goals for that session.  Erin still sounded pretty junky that day, and everyone was concerned about her lungs, but by Tuesday she sounded so much better.  What a relief!  I think it truly helped for her to be up walking.  We had her in the pool a lot as well, which is also very good for her lungs.  On Tuesday, SOLOMON came to visit Erin at the Ronald McDonald House after therapy.  Once again, she was ecstatic!  She was so excited to share her "home away from home" with him.  Terry and SOLOMON stayed for dinner and spent time playing on the playground with the girls.  Taylor and Jade were all smiles as well, because they love him just as much as Erin.  Lucky dog!  We want to thank everyone at the RMH for being so wonderful and welcoming Terry and SOLOMON with open arms.  We are truly blessed to have the opportunity to stay there each time we visit Baltimore! 

Erin and Taylor's physical therapy was exhausting but outstanding.  They both worked extremely hard, and we're so proud of them for the amount of effort they put into it.  It will definitely pay off, and they understand that in order to achieve their goals, they have to put their heart and soul into the work.  We do need to thank the therapists yet again for working so hard with our girls and for making it so much fun that they don't always realize they're working!!  There are so many people who worked with our girls, so we are just going to say a giant THANK YOU to everyone who worked with them, played with them, laughed with them, and swam with them.  Absolutely outstanding!  Thank you!

We were able to see some of our very favorite people while we were at KKI this time.  During our first week there, we got to hang out with the Peffley family.  They have four kids, the youngest of which is the one who receives therapy.  The older three very happily played with Taylor, Jade and Erin, often helping them with their therapy.  We were even able to go out to dinner with them on their last night after therapy.  It was so much fun!  We also had the opportunity to hang out with another little girl who (you're not going to believe it) is a formerly conjoined twin and has the same spinal cord injury that Erin has!  I'm not lying!  O.K., so I'm not a mathematician, but the odds of that have to be astronomical!  Anyway, she is an adorable little girl with more personality than you can imagine.  Erin and Keira were able to have some of their pool therapy together.  Too much fun!

Since this is turning into a short novel already, I will tell you about one more thing before publishing it.  Terry Henry, from paws4people/paws4vets, brought SOLOMON up to Baltimore again during our last week of therapy.  We had Ms. Becca, Erin's OT, work with both of them.  This was our second opportunity to have them working together, with Erin learning how to give commands and SOLOMON learning how to listen to her.  It was exciting to see Erin gain confidence as she had SOLOMON by her side.  Terry and SOLOMON had lunch with us, and then they stayed to watch Erin doing her pool therapy.  SOLOMON even allowed Erin to squirt him with pool water, and he didn't flinch.  He's extremely tolerant and patient.  Every time we are with SOLOMON, I am more convinced than ever that he is the perfect dog for Erin!  We all fall in love with him over and over again.  As soon as he left that day, Erin started to cry because she missed him already.  We haven't been able to see him since then, but she talks about him every day, and she tells me how very much she misses him.  We will be able to see him several more times this summer, even visiting Erin's school to get him used to it.  We just want to thank Terry for all of his effort and the many miles he is putting on his car so that Erin can spend time with SOLOMON.  You are all doing an amazing job in training him, and we are deeply grateful for all of your hard work!

O.k., I will end this for now.  I have so much more to tell about the past few weeks, but I will warn you that the upcoming week is even more action packed than the previous ones.  I will do my best to post even short updates.  I will most likely tweet more often than I post here, so if you want to keep up with us, following us on Twitter may be your best bet.  We hope you're having a great week!

O.k., each time I say that I'm going to try to post more often, I end up not posting for a long time!  Sorry!  Things have been far crazier than normal at our house, so I actually have a legitimate reason.

A few weeks ago Jade and Erin both ended up getting fevers.  They didn't have any other symptoms.  Throughout the week, their temperatures were up and down, but we didn't take them to the doctor, because we truly thought it was just another virus.  On Friday of that week, Erin's nose seemed a bit stuffy, but we honestly thought she was just showing symptoms of allergies.  On Saturday she started to cough a little bit, and on Sunday she sounded like she had some congestion in her chest.  On Monday, she sounded worse, but she sounded the same as she did in February when I brought her in for two chest x-rays.  So, of course, regretfully I didn't take her to see her doc.  On Monday evening Erin couldn't fall asleep, because she just kept trying to cough.  As you faithful followers all know, Erin does not have a productive cough because of her spinal cord injury.  When we cough, we use our intercostal muscles between our ribs to make it more forceful.  Erin's intercostal muscles don't function below her midchest.  When she coughs, it sounds more like she is trying to clear her throat.  At about 12:30 in the morning, I brought her into our room to try a nebulizer treatment.  That seemed to calm her coughing down, but she was breathing extremely fast.  We kept her in our room, and as I was lying there listening to her breath, I could feel her body getting hotter.  At about 2:30 I turned on the light to take her temperature, and it was a shocking 104.3.  She was complaining that her tummy was really hurting, so we just didn't know what was going on.  We quickly got her ready, and Kevin took her to the E.R.  After many texts back and forth, he finally told me at a little after 5 a.m. that I should come to the hospital.  Erin had pneumonia, and they were going to transport her to Children's Hospital in D.C.  Thankfully K.J. was at our house, so I grabbed some things, and I quickly left.  When I arrived at the hospital, Erin looked terrible.  Kevin said she didn't even cry when they took blood or when they put in the I.V.  I guess that tells you just how terrible she was feeling!  They did a number of breathing treatments with her, but her respiratory rate was at 70 and her heart rate was up in the 160-170 range.  Try breathing 70 times per minute and see how you feel.  It's awful!  As we discussed our options, the E.R. doctor decided he needed to intubate Erin for transport.  After going back and forth, we decided that it would be best for Erin to be transported by Children's transport team in the helicopter.  If they felt that Erin needed to be intubated, we would have them do it.  Now, don't get me wrong, we were not opposed to her being intubated if she needed to be, and it wasn't that we didn't trust the doctor taking care of her in our local hospital; we just trust the people at Children's more when it comes to our daughters.  Chances were that we knew at least one member of the transport team, and with them it's all children all the time.  If Erin needed to be intubated, it would be them doing it.  We apologize if we offended any members of the E.R. team, but our job is to advocate for our children.  Erin was taken into the procedure room prior to transport, just in case they needed to intubate.  The transport team arrived a little after 7 a.m. and prepared her to go.  We were told that she didn't need to be intubated (yay!), but we were also told that neither Kevin nor I could fly with her in the helicopter.  What?!  Talk about a completely helpless feeling!  They had to bring a full crew because of Erin's respiratory issues, so there was no room for a parent on board the helicopter.  Wow, I was a wreck!  As we watched them take her out on the gurney and load her into the chopper, I had tears streaming down my face.  Kevin just held me and told me it would be o.k.  We had made some phone calls to make sure there were people waiting for Erin when she got to the hospital, and we quickly went home to get Taylor and Jade ready to drive into D.C.  We want to thank Terry, Nadia, and the other wonderful people who were waiting for Erin in the E.R. at Children's when she arrived.  It was so comforting to know that there were familiar, caring people there with her when we couldn't be.  We could never thank them enough for helping to take care of Erin!!!  We fought our way through traffic and arrived after 10 a.m. 

I have to go right now so I can feed my three starving girls, but I will TRY to write more later (or within the next few days).  We hope you're having a great week.

Five years ago today, Kevin and I carried Erin and Jade from the Neonatal Intensive Care Unit down to the Operating Room at Children's National Medical Center in Washington D.C.  I was holding the girls, and he had his arm around me, which gave me more strength than he knows.  We had an entire entourage of family, nurses, social workers, a photographer, and film crew.  No one spoke, and it was eerily quiet except for the sound of our footsteps and the small wimpering noises Jade began to make as we got closer to the surgical suite.  As we tried to comfort her, I seriously considered just taking our girls and leaving the hospital.  How was I supposed to hand them over to someone knowing I may never see them alive again?  How many kisses were enough to let them know that mommy and daddy loved them more than they could ever fathom?  How could we explain to our 3 1/2 month old twin girls that this surgery was necessary for their survival?  How could I survive without my heart over the next 8 hours, as the anesthesiologist took it with him when he carried our girls away?  In the most heartwrenching moment of our lives, we did have to hand over our beautiful baby girls.  We did have to try to say "see you later".  We did have to hope and pray that our conjoined twin girls would have enough strength to make it through a surgery that many do not survive.

In a miracle from God, Erin Faith and Jade Hope did survive their separation surgery (and so did I).  On the afternoon of Saturday, June 19, 2004, Kevin and I re-entered the NICU to once again see our daughters, but this time on separate beds.  We were overwhelmed by the feelings of thankfulness, relief, and sheer joy.  We had thought they were going to look so tiny lying in the adult sized hospital bed all by themselves, but our first glance showed us something different.  Each of our girls looked so big!  It could have been the fact that they were hooked up to ventilators, and they had tubes and wires everywhere, but whatever it was, we were shocked.  We knew that they were going to be surrounded by equipment.  In fact, in order to prepare us, the hospital had taken us in to see other children who were hooked up to similar equipment before the separation day.  Regardless of what was there, we did not even see those things.  We were focused on our amazing little girls.  We were focused on the fact that they had just endured something that very few people in the world would ever face.  We realized that they had gone through more in their 3 1/2 months than most people would go through in a lifetime.  Miracles! 

While this day is also a little bittersweet, we always choose to focus on the absolute blessings we were given.  It is bittersweet because this day also marks the day of Erin's spinal cord injury.  It is the day that, sometime during the lifesaving separation surgery, Erin had a stroke to her spinal cord and became paralyzed from mid-chest down.  While we didn't know it at the time and didn't find out until the end of September, we know it happened during the surgery.  However, we choose to focus on the fact that Erin could have died from that stroke to her cord.  We focus on the fact that she could have suffered cognitive loss, but she didn't.  We focus on the fact that we have both of our precious little girls here with us each and every day, and we are thankful!  We are friends with many wonderful and amazing families who do not have their twins with them here on earth, and we hold them close in our hearts with each passing moment.  We trust that God has great plans for each of our girls that requires them both to be exactly as they are.  These are the things that we focus on.

Today is a GREAT day!  It was like a second "birth" day for our daughters, where they were given a new chance at life.  It is a day we will always remember and celebrate within our family, and it is a day that we will forever be thankful for. 

Amazingly, as promised, I will now FINALLY tell you our exciting news.  Taylor has been deemed eligible to receive a wish from the Make-A-Wish Foundation!!!!  While we truly wish she was not eligible, we are ecstatic that she will be able to do something so very special because of what she has to deal with on a daily basis.  When we told her, the look on her face was priceless, and she had a sparkle in her eye.  We told her all about it.  There are four categories:  "I want to be...", "I want to go...", "I want to meet...", or "I want to have..."  Wow, that's a tall order for a 7 year old to think about!  When we asked her what she thought she might like to wish for, Taylor said, "I want to go to King's Dominion".  Oh, bless her little heart; King's Dominion is an amusement park about an hour from our house.  I guess all of her friends have been there and talk about it often.  Many people around here get season passes to the park and go all the time.  I bet you've already guessed that we've never been there!  Unfortunately, that's not on our priority list; feeding our family and paying our bills always comes first.  Anyway, we told her to think bigger, so of course her next idea was Disney World.  We never talked about a second choice, because she just seemed so enamored with the thought of Disney.

Last Sunday, two wonderful women from Make-A-Wish came to our house to interview Taylor about her wish.  She seemed a bit shy that day, maybe worried that she was asking for too much.  When they asked her what her wish would be, she did in fact say Disney World.  When they asked her what she wanted to do down there, Taylor said, "I want to swim with dolphins".  Well, I'm not sure they have dolphins at Disney World (Sea World, yes), but that is what she wants to do!  She has never been to an amusement park, so she doesn't really know what to expect, and she doesn't know what there is to do.  It was very cute!

Taylor was then asked what her second wish would be if they couldn't make her first wish come true.  As I said before, we never talked about a second choice, so I was just as interested in her answer as these women from the organization.  I thought she might say something like, "meet Miley Cyrus", or "meet the Jonas Brothers" or even "go on a cruise" (o.k., that might have been my wish... ahem).  Anyway, it seemed that Taylor didn't even have to think about her answer.  She immediately said, "I want to meet Barack Obama".  Kevin and I smiled, knowing the great interest she has taken in him since before the election, but we were still a bit surprised.  We even tried to talk her into one of the aforementioned ideas, but to no avail.  She had her mind made up!  Now, don't get me wrong.  We would love to meet the President, but we were thinking more along the lines of a wish that would get us out of the area in which we live.  It would take us less than an hour to drive to the White House for that wish.  We even joked around about meeting President Obama while flying on Air Force One down to Disney World.  Now that's what I call a WISH!  Ha!

Just a quick amusing moment from the interview.  The women asked Taylor what her favorite store was to go shopping.  Her answer:  Target!  Since that's really the only store she knows, I guess it's a fitting answer.  I mean, you can get just about everything you need at Target! lol

So now our paperwork is all filled out, the documentation is in, and we are just waiting on an answer from the Make-A-Wish office in Richmond.  Keep your fingers crossed that Disney World will be the wish that's granted.  We'll let you know as soon as we find out.  It would be such a wonderful vacation where our children could just be kids for a few days.  Sounds great to me! 

O.k., there's our big news.  I hope it wasn't anticlimactic for those who have been waiting with bated breath to hear it.  It's exciting to us!  Thanks for waiting so patiently!  :0)

I don't know why I do this to myself.  I get so far behind in updating that I'm completely overwhelmed when I finally sit down at the computer.  Well, I do know why it happens...  we're so utterly busy that I don't have time to actually even think about the computer, much less contemplate typing an update.  However, I will do my very best to get you caught up on our lives.  I'm not even sure people check our blog anymore since I've been absent for so long!  I will once again apologize to our faithful readers for abandoning you for a few weeks.  Please stick with us... I'll try to do better!

Kevin has been traveling quite a bit and was actually in France over Memorial Day and the following week.  He then proceeded to land at Andrews Air Force Base and went directly to another airport to catch a flight to Mississippi to help his mom move.  As if that wasn't enough, he flew back home the very next day.  He wasn't even in MS for 24 hours!  Yes, he was TOTALLY EXHAUSTED!  Needless to say, we were so very happy to have him back.  No more big trips for a while, thank goodness.

On Tuesday, June 2nd we spent the entire day at Children's for diagnostic tests and appointments with four different doctors.  Don't worry, it's nothing to be concerned about... just routine exams.  Every six months Erin and Taylor have to see their neurosurgeon, orthopaedic surgeon, physiatrist (doctor of physical medicine), and urologist.  Because of the issues with their spinal cords, Taylor and Erin have to be watched fairly closely in all of these specialties.  After a scoliosis study and renal/bladder ultrasound, we went down to wait for all of the docs to come in to see us (we get to stay in one room while they make their rounds).  It usually takes FOREVER for all of them to get there, but someone must have waved their magic wand that day.  Our neurosurgeon and the urology nurse were actually "fighting" to see who could come in the room first.  To tell you how funny our neurosurgeon is, he actually had the urology nurse paged to say her car was on fire.  When she didn't answer that, he had another nurse come in to tell her she had a phone call.  Needless to say, we were all laughing at their antics, which always makes the time go faster.  Anyway, all of the doctors were pretty happy with how the girls are doing.  Erin's tone in her legs has increased, and there was some discussion of botox or baclofen, but we are still holding off for now.  Phew!  I'm not sure I'm ready for all of that yet!  I guess I'll have to get there someday, because SHE will be there someday. 

After our long day at the hospital, we took our picnic blanket and some snacks and went to watch Kevin's performance that evening.  The girls absolutely adore going to his shows (o.k., well I really do too), and they love the location of that one.  We spread the blanket out on the hill under "our tree", and we get to hang out and watch an amazing performance.  Last Tuesday it looked like it was going to rain, so I let the girls bring their umbrellas with them.  They had a blast playing under the umbrellas (even though it never rained), and they were very excited to see their daddy (and my very handsome husband) out on the field.  Taylor told Kevin that she was going to give him a sign while he was out there, and he said he would be watching for it.  During the show, when he was facing us (four in a crowd of hundreds), she saluted him.  After it was over and we went down to see him, he told her he saw her salute.  She was absolutely BEAMING!

Taylor had her spring awards ceremony on Wednesday, and she received two awards.  She once again got the Superstar Student Award, and she also received one for the Accelerated Reading Program she was involved in.  Go Taylor!

A few other exciting events that have happened in the past week:  Taylor had her cast removed on Monday.  Yay!!  It was so exciting, and I took about 50 pictures of it coming off.  The tech that was doing it must have thought I was just a little bit crazy... oh well!  I will try to post some of those this weekend, and you will be able to see the button she had sewn to the bottom of her foot (holding her tendon attachment to the bone while it healed).  When they removed the button, she had a hole in the bottom of her foot.  Erin, who used to want to be a doctor, would not watch any part of the process.  She refused to look as they cut the cast, and she certainly wanted no part in seeing Taylor's incisions or the button.  She can't even stand to watch any t.v. shows that show any medical aspects, including their own show.  She just about passes out and becomes extremely upset.  Well, who could blame her I guess.  With everything that she's been through (and will have to go through) in her life, I wouldn't want to see any medical stuff either.  It was pretty amusing though on Monday.  Erin would not even sit by Taylor unless her right leg was covered with a blanket.  Yes, I took a picture of that as well!  Erin was very relieved when Taylor could actually put her sock and brace on so the incisions were covered.  Poor thing!

On Tuesday we went to have some of our equipment adjusted by the orthotist.  We seriously have the very best orthotist possible, so even when we bust our behinds to get there on time and then have to wait almost an hour to see her, we never get upset.  Ahem...  well, not too upset.  She honestly is the best, though, so if you ever need any braces done (arm, hip, knee, ankle, foot, torso, etc) let me know and I'll get you her info. 

On Wednesday, Erin and Jade had a party in their classroom.  It was a beach party theme, and they were able to go outside and play on a slip 'n slide and in little pools.  There was food, fun, singing, and more fun.  Very exciting!  Later that evening, Taylor had an end of the year celebration in her classroom.  All three girls are always mobbed by hugs when they are around Taylor's classmates.  I guess they are truly loved!  Although it does get a little out of hand sometimes, so we need to watch closely.  We want to thank our girls' wonderful teachers for such a fantastic school year, and we want you to know that we deeply appreciate everything you have done for our daughters.  Mrs. Lisa, Ms. Molly, Ms. Kathleen, Mrs. Amanda... we will miss you all.  You did an outstanding job with Erin and Jade.  Mrs. F... there are no words to express our gratitude for the lessons you taught and the love that you shared with your students.  Taylor adores you, and she can't stand the thought of leaving you behind.  Just know that you will have two more Buckles girls coming your way in 2 years! 

Today was a huge milestone in the lives of Jade and Erin.  As we approach the five year anniversary of their separation surgery, attending their preschool graduation was a blessing we thought we may never experience.  We are keenly aware of how fragile life is, and on days like today, we are even more thankful for these gifts that we've been given.  Our girls have graduated and will be moving on to Kindergarten!!  Erin's name was called first, and she "walked" up to receive her certificate in her RGO and using her walker.  That was HUGE!!!  She took those steps all by herself, and as Mrs. Lisa talked about her strength and determination, I had tears streaming down my face.  We are so extremely proud of her!  When Jade's name was called, she had the most adorable smile on her face, and my heart was overflowing with love for these miraculous little girls who beat the odds to be with us here today.  

For Taylor, one of the best parts of her week happened tonight.  She was finally able to take a real bath for the first time since April 23rd.  Yes, we did bathe her with the cast on, but it was difficult and definitely no fun (for her or me).  She was able to take a long bath tonight, relaxing and playing.  What a relief!  The reason she had to wait almost a week after her cast was removed was because she had a hole in the bottom of her foot from the button, and the hole led directly up to her bone.  We had to wait until the hole was sealed over before submerging her foot.  Today was the day! 

O.k., I'm certain I left some things out, but I'll try to remember them as I'm doing other things.  You can always sign up to follow me on Twitter, where you'll get updates about the things we're doing as they happen (and probably some of the things I'm forgetting to write about here). 

Oh, and I know some of you are patiently (or impatiently) waiting to find out what our exciting news could be.  I will update about that tomorrow.  I promise (I really do)!

As for right now, I am going to get ready for bed.  I'm extremely tired (but not nearly as tired as Kevin).  I hope you all have a great night!  I will talk to you again tomorrow!  :0)

Taylor's field trip today was fantastic!  I'm so glad I was able to chaperone, and I want to thank my friend Michelle for making it possible.  She took care of Erin and Jade before school, even learning how to catheterize Erin (which she has been offering to do for months).  I have never been able to leave them with anyone before, because there is nobody else who can cath Erin except Kevin and myself.  Michelle had to navigate medicine, equipment, a car full of girls, and probably a whole lot of noise!  Thank you, Michelle!  It meant a great deal to Taylor and I.  She probably would not have been able to go if I had not gone, so that made it even more wonderful.  Apparently, the buses are not allowed to bring wheelchairs along unless they can be tied down in some way.  I had to follow behind the buses in our van so that Taylor could have her wheelchair.  It was worth it though, as I watched her enjoy the day with her friends.  We did not have to go far, so it was not a big deal (although I wasn't sure I had enough gas to make it there!).  Oh, where did we go?  We went to a place called Ferry Farm, which was George Washington's boyhood home.  We went there last Fall for her other field trip, but this time we were able to be outside the entire time enjoying the fresh air.  The kids played games from that time period, and they were able to explore the natural surroundings.  We went through different stations and learned quite a few things about what life was like when our first President was young. 

The class was broken up into small groups, and I absolutely loved all of the kids in mine.  I had Taylor and most of her very best friends.  They are all wonderfully kind and considerate, and I truly lucked out (with Mrs. F's help) to have such a fantastic group.  Other than Taylor, we had Karla, Gabby and Slade.  Taylor and Slade have been teased throughout the majority of the year for being such good friends.  A lot of kids say they are boyfriend/girlfriend, but we talked to her early on about the fact that it is absolutely o.k. to be good friends with a boy.  We told her to just ignore the kids who tried to tease them.  Anyway, Slade was very protective of Taylor today, wanting to help her in any way possible (Karla and Gabby were the same way).  Slade is a little gentleman, always saying, "yes, ma'am/sir", treating everyone with respect, etc.  Well, he said something today that really made me laugh.  The kids were playing games, and they had to choose a partner.  All of a sudden he said, "Well, Taylor is giving me the man look.  I better be her partner".  It was absolutely adorable and had me giggling quietly as they began playing.  It was too cute! 

All in all, it was a great day and much fun was had by all.  I am thankful that I was able to go!  I will try to post pics tonight. 

We hope everyone has a wonderful weekend!

I am so excited to tell you about what we did yesterday.  However, before I do that, let me tell you about how we almost missed it.  Because of Memorial Day, my week was thrown off from the start.  On Tuesday, I kept thinking that it was really Monday, as it was the first day of school for the week.  At midnight on Tuesday (literally) I was thinking about the rest of the week, and all of a sudden it hit me (like a ton of bricks) that we were scheduled to be at a speaking engagement on Wednesday... as in, less than 24 hours away.  I almost went into a full-blown panic attack, because "what if I hadn't remembered?"  "What if I went through all of Wednesday thinking it was only Tuesday?"  This event has been planned FOR MONTHS, and they asked me back in January if I would speak at it!!  Before you ask, yes it was written down in my planner, which is sitting on my kitchen counter, open to the right page and hasn't been looked at in days.  THANK GOODNESS I remembered!  That would have been so terrible if we missed it!  I mean really, REALLY terrible. 

So now, moving on (which I so obviously have not done) I can tell you about our exciting event.  We were invited to speak at the grand opening of the brand new Kennedy Krieger Institute outpatient building.  It was a private affair to honor all of the very amazing and generous donors who made it possible to construct this spectacular building.  I was asked to tell our story and describe how Kennedy Krieger and the International Center for Spinal Cord Injury has impacted our lives.  We all got dressed up, picked up Taylor early from school and headed up to Baltimore for this very special evening.  Before it began we were able to get a tour of the new facilities, which include a much bigger gym/therapy center and a floor dedicated to two new fantastic therapy pools and the Hydrotrack.  The girls were all amazed and enthralled, and they can't wait to head back up there for therapy soon.  Thank you, Elise, for the tour (and everything else)!!  After our tour, we met up with Ms. Becca, a great friend and our favorite OT.  She was asked to be there to help us out, which was absolutely perfect.  The girls adore her, and she is wonderful with them.  She has been with us since our very first visit to KKI.  In fact, if you ever watch the show on Discovery Health (Conjoined Twins: Erin and Jade), you will see her.  Anyway, I need to tell you that I am usually pretty nervous when I have to get up to speak (isn't everyone?), and I have learned over the years that if I have a speech prepared and written in front of me, I will just read it.  I know, it definitely doesn't make for a very good speech!  So, since I am fairly familiar with our story, I just get up there and talk to the audience.  I'm actually far less nervous when I do it that way, and I can keep eye contact with everyone.  In my mind, I always have specific points I would like to talk about (and I usually remember all of them).  Anyway, last night I was scheduled to speak after the President and CEO of KKI, which, I have to admit, did make me a bit nervous in and of itself, but the nerves didn't hit until about 2 minutes before I had to get up on stage.  Thankfully I knew enough people in the audience who I could look at for reassurance once in awhile, and away I went.  I felt like it went well, and I received quite a few compliments after it was over.  Of course, I'm sure most of them were reacting to the actual story and not to the delivery or the deliverer, but it was wonderful to hear.  It was an honor to have the opportunity to thank the outstanding people who have given so much to help families like ours to receive the best treatment possible.  They will never fully understand the magnitude of their gifts, but I hope I was able to, in some small way, explain our gratitude.  The best part for us was the chance to personally thank some of the families after the presentations were over.  The highlight of the evening for Taylor (and Kevin would be quick to point out, me) was meeting Michael Phelps' mom and sister.  Taylor was so excited as she watched him in the Olympics, even staying up late a few nights to see some of his races.  Because of him (and hopefully me), Taylor has decided that she wants to swim competitively as well.  In fact, she has already asked me if I will come and watch her swim in the Olympics when she makes it there someday.  Well, OF COURSE I WOULD!!!!  Anyway, Mrs. Phelps got down by Taylor's wheelchair and talked to her for quite awhile, encouraging her to keep reading (she's an elementary school principal).  Michael's sister Hilary took down our address and said they would send Taylor something special.  Can you guess what Taylor has been talking about ever since then?!  She is so excited!  Erin and Jade's favorite part of the evening was playing in the new garden area.  It's so nice to have green space in which people can relax and even do therapy.  What a great idea!!  There are fountains that draw the attention of every child, and I can imagine that there will be a few wet children throughout the summer (hopefully none of them mine)! 

The evening was a complete success and enjoyed by all.  I want to thank the Public Relations department at KKI for allowing us to be a part of their special evening.  Elise and Becca, we can't thank you enough!  It's always wonderful to catch up. 

We ended up getting home at about 10:30 p.m.; we were all exhausted.  I was thinking it would be difficult to wake the girls up in the morning to take Taylor to school, but Jade was awake at 7:15.  Of course, she was tired today, but apparently she doesn't have the ability to sleep in.  Her tiredness showed when I took her to school, and we had more tears today.  She came out after school with a huge grin, but I really wish she would go in that way again.  Hopefully we'll get to bed early tonight.  We have to be up extra early in the morning, because Taylor has a field trip (which I am chaperoning), and the girls are going to play at Katelyn's house.  Should be a great day for everyone (unless it rains like it's supposed to).  Keep your fingers crossed -- Taylor would have a pretty tough time in her cast if it rains. 

O.k., I still have even more exciting news, but I need to get the girls in the tub.  You'll just have to wait.... and no, I am not expecting another baby.  The last time I said we had exciting news, quite a few people thought it was that.  While that would be exciting, that's not what it is.

I'll update about the field trip as soon as I have time.  Have a great evening!