Friday, June 20th, 2008

A full day without my pins and boy what a difference it makes in my mood. I was so playful and happy most of the day. Then it was time for bed. I was having so much fun that I rolled around for 2 1/2 hours with my Mommy. Then, Marianne came at 10 to start her shift. I stayed awake for her another hour and 15 minutes before finally falling asleep!

Mommy thought you might be interested in what my distractors look like. It is called the Osteomed Logic Junior. You can see the pins (screws) to the right and to the left is the distractor that is still attached to my jaw. Pretty cool huh!

Peyton Nicole Smith

Thursday, June 20th, 2008

Mommy prayed today would go well - after all it was the first time she would be driving to Palo Alto, and it would just be her and Lucille. She was very nervous but there was no need to be. I was as Mommy said, "the best baby ever".

I took a little nap right before it was time to leave. Then, I played quietly for the two hours it took to get to Palo Alto. Mommy was an hour early (never know how traffic is going to be) so we sat in the waiting room. I was an extra happy girl today. I waved at adults and children alike and was smiling and laughing. The last several weeks I have been so unhappy all the time that Mommy was so relieved to see me back to my normal self. Everyone commented on how cute I was!

Then they led us back to the exam room. Mommy sat me on the table with a piece of paper, a gum wrapper and my little plastic Elmo and I entertained myself for an hour while we waited for the doctor. It had been four hours without a nap by this point but you never would have known it. I flirted with the nurse and the doctor when they finally came in - that is until they gave me a shot with a really long needle at my screw site to help with the pain. Then, the doctor used the screwdriver to break the head off the screw. He took scissors to pull off the plastic sheath covering the screw and then it was time to break the screw off from the distractor. The first one was a bugger and he was working it all around in my head before it finally broke free. Mommy and the nurse were holding me down and I was crying pretty good. Then it was on to the other side. Within five minutes both screws were removed and the nurse put some salve on the open wounds. She said they should close up within a few days. They also removed the tape over my incisions and cut back the stitches - the rest will be absorbed.

Mommy had lots of questions for the doctor. He said that he hasn't yet tried to "loosen" my TM joint but will do so when he removes the distractors. I will probably be able to get off all pain meds within the next 48 hours because I will be feeling much better. Although the swelling should go down, it will take 4-5 months for it to go away completely. I have to go back in 6 weeks for a follow up appointment. Then, it was time for some post op pictures and we were on our way. I fell asleep almost immeadiately and slept pretty much the entire way home - 3 hours!

Once I was home I played for several hours - smiling and happy. When Daddy came home from work he was thrilled to see me in such a good mood.

The only bummer part of the day is that at the tail end of all of my feedings today (6 am, noon, 6 pm) I started having reflux issues again. Although not much actually came out, I had all the signs and symptoms that I used to have before I started my continuous feeds. The nurse said that many parents have noticed an increase in reflux following a jaw distraction but she wasn't sure why. Mommy is going to give me some time to get back to a normal routine and if it is not any better she will follow up with my GI at our appointment on the 30th.

Mommy talked to the anesthesiology department at Shriner's today. Tuesday of next week I will go in to be examined by the anesthesiologist - and then we will find out if I am cleared for surgery. Lots of excitement!

Peyton Nicole Smith

Wednesday, June 18th, 2008

Although we weren't able to attend the third annual trach conference there was a video put together. If you look really close you will find a picture of me right towards the end (8:10). I'm a star!

Today I met my feeding therapist, Karen for the first time. She took a medical history on me from my Mommy and then she wanted to see me eat some baby food. I don't know if we can really call it eating - since the surgery I don't really open my mouth anymore. My parents aren't sure if it is painful or if there is a problem with the joint. Despite not opening my mouth, it was clear to everyone that I wanted to eat because I kept reaching for the spoon and would smack my lips when I got some of the peaches. Karen says I am a complicated case due to my trach, cleft palate, recent jaw surgery and ankyolsis. She wants my parents to give me a little baby food each day now to encourage me to eat. She doesn't have much concern about aspiration pneumonia because I take such small quantities.

By chance, Mommy saw an email from another mommy who had a child with a trach and a g tube. They were 100% g tube fed and most feeding therapists had given up on the child ever eating orally. That mommy discovered an intensive six week outpatient feeding clinic in Richmond, Virginia and when the child left he was 100% orally fed. They have a lot of success with kids like me. Mommy knows it is a little too soon for such a program but it is nice to know there is an option available.

Tomorrow is my follow up appointment in Palo Alto. Since Daddy can't leave work it will be my Mommy and Lucille going. Mommy has always been in the back seat taking care of me, so she is a little nervous to drive all that way but Daddy says she will be just fine.

Mommy needs to call anesthesiology at Shriner's tomorrow. They want to see me next week and give me the green light before the surgeon will schedule my hand surgery. Welcome to mi vida loca - my crazy life!

Peyton Nicole Smith

Tuesday, June 17th, 2008

Since there is no more screw turning, I am in good spirits most of the time. Mommy stopped giving me my Tylenol with codeine and now I am down to just Motrin every 6 hours. Mommy is going to keep that up until after my screws are removed and the swelling goes down to make sure I stay comfortable.

As my parents were getting me ready for bed tonight, I was starting to become really fussy. Mommy figured I was just tired, but Daddy realized that my other top tooth has finally broken through. That may explain the fussiness and the tiny bit of blood coming out of my mouth over the last few days. Finally!

My brother Chili is doing just fine now. No coughing at all last night or today (guess it wasn't cancer after all like Daddy thought). Mommy has figured out that if she squirts the nasty tasting antibiotics into a piece of crescent roll Chili doesn't seem to notice he is getting his medication. She smooshes Henry's pills in a piece of roll. Velveeta cheese, hot dogs and other meat products work well. Since Mommy hates taking pills herself, she is more than willing to help disguise them so she doesn't have to try to force feed them the medication.

Mommy is still waiting to hear back from Shriner's on a surgery date so no news on a trip to see Jackson just yet.

Peyton Nicole Smith

Monday, June 16th, 2008

Mommy should know better then to joke about something - because as soon as she does it happens. With Henry and I both on medications, Mommy was just grateful that Chili seemed to be doing just fine. She joked that at least one of her "children" was not on any type of medication. Then, Chili started coughing and gagging yesterday. During the night, after he would cough he would whimper and cry. Mommy ended up sleeping on the floor with him since he seemed so upset. When he got up this morning, he was still coughing. Daddy thought Chili was really sick so Mommy made an appointment to take him to the vet. Any time the dogs are coughing, it could be contaigous, so Mommy and Chili got special treatment. Mommy and Chili got to wait in the car instead of the waiting area. Then, they were led to the back of the building to a special room. Mommy was suspicious that Chili had "kennel cough" which is pretty much just a version of doggy flu. It is very contaigous and is called kennel cough because dogs often pick it up when they are boarding and around other dogs. Since both Henry and Chili just came home from boarding about 10 days ago, Mommy had a feeling that was why he was coughing. The doctor took a look at Chili and agreed with Mommy. She said that either Chili brought it home with him, or Henry was a carrier and brought it home and gave it to Chili. Either way, Chili is going to have to get antibiotics twice a day for 14 days. So yes, now all of Mommy's children are officially on medications. Right as the doctor was finishing up with Chili, he suddenly noticed a framed drawing of a horse on the wall and started freaking out barking at it. The doctor also has a doxie so she thought it was pretty funny. Typical doxie.

Mommy got in touch with Janice at Shriner's. She said that Dr James was out almost all of July and that she was booked until October for surgery. She said that she would talk with Dr James and the anesthesiologist, though, to see if they could fit me in somewhere for my hand surgeries. Janice said she would get back with Mommy tomorrow to let her know. Once Mommy has a date then she wants to plan a trip back to Salt Lake to visit my new cousin, Jackson.

Since I had no screw turning today, I was a happy girl! The only problem was that I had a record number of stinky diapers - six throughout the day which resulted in three outfit changes as well. I am keeping Mommy busy with laundry! My parents were so happy to see that I was in such a good mood and wanting to play. Dr Schendell emailed Mommy back and said to try to turn one more time tonight and if it was difficult then I was probably done. My parents tried a 1/2 turn on each side but it wasn't turning very easily so they are officially done turning screws - hopefully for several years to come!

Peyton Nicole Smith

Sunday, June 15th, 2008

Happy Father's Day to all the fathers!

Mommy and I tried to give Daddy a (relatively) stress free day. Since I still needed to have the screws turned, Mommy woke Daddy up at 7 am. But, they turned my screws in bed so Daddy didn't even have to get up. Then Mommy let him go back to sleep and he woke up for good about 9:30. Mommy made him some breakfast and since I was down for a nap she took the opportunity to get the lawn mowed. After she was done and showered, she came back to take car eof me while Daddy went to the range to shoot for a little while. He brought home some lunch and then Mommy sent him off to have a nap. A few hours later, she had to wake him up though since it was already 5:30 and she still needed to run and get me diapers.

Mommy dropped the camera off at Best Buy while she was out and the Geek Squad told her it would be 2-4 weeks before it was fixed since they have to send it out. Bummer!!! By the time my parents get the camera back, I will look a lot different. Hopefully by then the swelling will have gone down.

As my parents started to turn my screws this evening, they only made it two turns on each side and it seemed to offer some resistance, so they are hoping that means they have come to the end. I also didn't really cry so my parents think maybe it can't move out any farther so it wasn't as painful as when it actually was moving.

Mommy let Daddy open the Father's Day presents before my surgery. Henry and Chili got him a marshmallow air gun, I got him a remote controlled fork lift to bring to the office, and Mommy got him a valet to hold all his electronics for the nightstand. My Grandma and Grandpa Mower got Daddy a kit to make a stepping stone with an impression. Daddy can't decide between my hands or feet but it will be a fun project when I am feeling better.

On Friday, my parents got the first printed copy of the blog. It had the entries from before I was born through then end of 2007. It is called Peyton's Place - The First Edition. This weekend Mommy sent off Peyton's Place - The Second Edition which runs from 1/1/08-5/31/08, right before my jaw surgery. Thanks Kelly for giving Mommy the info about Blurb. The book turned out great and my parents are excited to get the next one sometime this week. Mommy plans on printing a book about every six months or so. For those of you who leave comments on my blog, Mommy copies those into the book as well so I can read them when I am older.

Peyton Nicole Smith

Saturday, June 14th, 2008

Since still no camera it is another picture free day. It has been almost a year so it was time to clean the carpets today. While Mommy took care of me, Daddy worked on the carpets. I was fussy off an on but never really got in a good nap until later in the afternoon Daddy rocked me to sleep and held me the whole time. I slept quite awhile until Daddy spilled some of his cold Pepsi on me - oops! The plan tomorrow is to get the lawn mowed and get some groceries and then Daddy will go to the range for some "Daddy" time on Father's Day.

Last night I started back up on my full feedings. All went well until 1/2 hour before the end of my afternoon feeding and I spit up a few times. It wasn't much so my parents decided to let me get my full feeding again tonight and see how it goes.

We should be really close to done turning screws. The doctor said that when we try to turn there will be resistance and the screwdriver might spring back. Mommy thinks that will be the most beautiful feeling in the world.

Peyton Nicole Smith