Friday, June 13th, 2008

It was a really good day today. I was on 1/2 formula and 1/2 Pedialite all day with no tummy problems. I was in a pretty good mood and played with Lucille - although I had several really long naps today. Tonight Mommy put my speaking valve on the for the first time since my surgery and I was making little squealing noises - very cute. I would like to show you some updated pictures of my jaw but I can't. You guessed it, Mommy dropped the camera again and broke it. At least when she bought it back in October after dropping the last one, she purchased an accidental handling service plan so this weekend she will bring it back to Best Buy to get it fixed. Until then, no photos : (

Peyton Nicole Smith

Thursday, June 12th, 2008

Mommy was very excited about today because it was my first meeting with my new feeding therapist, Karen. I took a good nap this morning after my screws were turned, longer than usual actually. When Mommy came out around 12:15, Lucille was rocking me in the chair because I had been so fussy for over an hour. As soon as Mommy picked me up I started throwing up all over her - 5-6 times in 10 minutes. I was just about to end my feeding anyway, so Mommy turned it off, cleaned me up and sat with me to play for a few minutes. I felt much better afterwards. Since my feeding therapy appointment was in 45 minutes, Mommy called Karen to reschedule for next week.

I went back down for a nap and then later Lucille started me on a reduced feed of Pedialiate for four hours. No more vomiting and my mood seemed to improve. My parents decided not to turn screws tonight since I wasn't feeling well. When Mommy put me to bed, I was like my old self, rolling around playing in my crib with lots of smiles for Mommy. It took me an hour to go to sleep but it was because I was having so much fun. Mommy let Marianne know I would be on 1/2 Pedialite 1/2 formula for the next 24 hours to make sure my tummy was back to normal before introducing full feeds again. Then it was off to sleep for my parents.

Peyton Nicole Smith

Wednesday, June 11th, 2008

My parents have been anxiously awaiting today. It was time to go back to Palo Alto to check in with Dr Schendell. I was really fussy last night and not sleeping well so my parents were not looking forward to the drive. I was in a pretty good mood, though. When my Daddy turned up, "You're My Everything" by Michael Buble I started dancing in my car seat. There was a lot of traffic and half way there I needed a diaper change in a bad way so Daddy pulled off at the closest exit and then we were back on the road!

When we got to the office we only had to wait just a short amount of time in the waiting room. It was really busy and every seat was filled - kids running everywhere. A little boy was sitting next to me being held by his mommy and I showed off my new skill by waving bye-bye to him when he got up to leave.

We made it back to the exam room and Dr Schendell and his nurse arrived quickly. My parents had not turned the screws this morning since it was so early but figured the doctor would want to do it - so they had prepared ahead of time by giving me the Tylenol with codeine. Sure enough, Dr Schendell turned the screws while Mommy held me down. While I was recovering, Dr Schendell told my parents that I had so much growth already that there shouldn't be any reason to do a second jaw distraction at this age - I could probably wait a few years before needing it again. He said it was already in a good place and I still have several more days to go of turning the screws and getting even more length. My parents were very relieved. Mommy will come back with Lucille next week and they will snap the screws off - just leaving the distractors inside. Then, I get to spend the next 3-4 months recovering. After that, Dr Schendell will have me come back for another surgery - this time to remove the distractors and repair my cleft palate. Meanwhile, that leaves a big window of time to try to get my hand surgeries completed. Mommy is going to get in touch with Dr James at Shriner's to see if they can fit me in this summer. My parents are very happy to see my chin emerging - they think it is pretty cute.

Peyton Nicole Smith

Tuesday, June 10th, 2008

As the hours pass, my mood continues to improve. My parents aren't sure if it is the regular pooping, the strict schedule of pain medications or just getting used to the screw turning - but I am definately happier for longer periods of time each day. I still don't like the turning of the screws, but as soon as my parents are done, Mommy will take me outside to show me around the yard. She points out trees and flowers and birds - anything to keep my mind off of the pain and on to something else. Although I am not cheerful, I will usually stop crying to take in the world around me for a little while.

Tomorrow we all return to see Dr Schendell in clinic for a follow up appointment. My parents can see my jaw growing a little each day and are pretty amazed. We probably won't know for weeks whether I will have to have the procedure done again, but for right now it gives my parents some hope to see some progress knowing all that I have had to go through to get it.

Peyton Nicole Smith

Monday, June 9th, 2008

After my screw turning this morning I was pretty fussy and took a long nap. When I woke up Lucille had come to play with me. I wasn't in the mood to play, though, so she rocked me and I fell back to sleep for awhile. My tummy had been rumbling and churning all morning and mid-morning I had another big messy diaper. After that, my mood improved a lot and I was more like my usual self.

My parents both returned to work today but Mommy stopped by often to check in on me. Today was my brother Henry's birthday. He and Chili celebrated with a Frosty Paw. Soon it will be my birthday!

Peyton Nicole Smith

Sunday, June 8th, 2008

I had a good night last night, only waking for about 1/2 hour for Lucille and just playing in my crib. Today I would have moments of feeling okay and playing but most of the time I wanted Mommy to walk me around the house. Otherwise, if she sat down with me I would start whining and crying. I am getting the full recommended dose of pain medications but still don't feel so hot so Mommy is going to check with the surgeon on Monday to see if there is anything else my parents can try.

This morning I started back up to full formula feedings at my regular rates and did just fine. In the evening, I needed to also have a trach change in addition to my bath and turning of the screws. I was such a good girl when Daddy was cleaning the screw sites and cried just a little when the screws themselves were turned. Daddy took some pictures of me right before he did it so you could see the progress. Hard to tell right now with all the swelling but my parents can see a little chin emerging.

I went down pretty easy for bedtime tonight but played with my toys for quite a while. Mommy came over to check on me and disovered the feeding tube was disconnected. I was soaked along with my bed so it was time for a quick change of sheets and clothes and back to bed. Within about 20 minutes I was finally asleep.

Peyton Nicole Smith

Saturday, June 7th, 2008

So I am going to warn you. Today was all about pooping or lack there of. So if you don't have a strong stomach you might want to pass on this one!

When Mommy got up this morning, Marianne said I hadn't had any problems last night but I was very restless. As soon as Marianne left, it was time to turn the screws. I was upset but calmed down after walking around a little.

Because the prune juice all night had not resulted in a dirty diaper, Mommy had my GI paged. When she called back, she told Mommy to go get me Magnesium Citrate and an enema. Mommy ran and grab the items and headed back home. By 9:15 I had my Magnesium Citrate. The next four hours were some of the longest for me and my parents and Papa. I would alternate between crying and then eventually crying myself to sleep - although sleeping was never more than 15 minutes or so at a time. My parents could hear tummy rumbling and I would pass gass every now and again. After four hours and no dirty diaper, Mommy called Dr Davies again. The time had come for the enema. My parents held me down but it didn't seem to work because the fluid kept coming back out. They let a few minutes pass, put me in a different position this time and tried again. Initially, the fluid went in but came shooting back out right in Mommy's face (gross huh!).

At that point it was time for Daddy to take Papa to the airport. Since I was working on my first diaper in a week, I didn't get to say much of a goodbye to Papa but I was really glad he came to visit me. Instead, I was bearing down and crying and as they pulled away Mommy heard something in my diaper. Sure enough, I had finally passed the poop and after Mommy checked out my diaper she could see what all the tears was about. Mommy called Dr Davies and she said that I needed a special powder daily for the next little while. Then she told Mommy to start me on 1/2 Pedialite and 1/2 formula.

I was in a pretty good mood at this point though but tired so Mommy put me down for a nap. I only slept about 30 minutes but was very restless. I woke up crying so Mommy tried to play a little with me on the floor. Within a few minutes though I was fussy again and then Mommy heard another not so good sound. She rushed me to the changing table but it was too late. I was covered head to toe (literally) in diarrhea. Gross!!!! Mommy was pretty happy that I was pooping though, so she took it pretty well although she wasn't so excited about all the extra laundry!

The rest of the afternoon passed with me being in a pretty good mood most of the time although there were still moments of fussiness. My tummy was nice and soft again and there was no more leakage around my button. At 7 pm it was time to have my screws turned again. I was really sad but still fell asleep pretty quickly. By 9 am I was awake again, though, so my parents gave me a dose of Tylenol codeine to help with the pain and I fell back to sleep in about 15 minutes. It's been a really long day. Although I really didn't like the enema I am so glad that I finally pooped and I know my parents are too. Now that the pooping is under control my parents can go back to focusing on my pain management instead.

Peyton Nicole Smith