Monday, June 30, 2008

Sunday, June 29th, 2008

Mommy left a message with Dr Schendel's nurse, Elena this morning letting her know what happened last night but no call today. Mommy is sure she will call us on Monday when they are back in the office.

Today we took it easy. I would spend time playing and took four small naps. I was in a pretty good mood most of the day and acted no different then I usually do. In fact, I ate my baby food and chewed on my pacifier and seemed perfectly fine. My parents are hoping that is a good sign. The only sign there was anything wrong is a little bruise on the right side of my chin.

Daddy put my CT scan from March next to the xray from last night side by side so you could see the difference in my jaw. It's pretty cool! The other thing my parents noticed right away is how much bigger my airway seems. That's good news for a potential decannulation later!

Peyton Nicole Smith

Sunday, June 29, 2008

Saturday, June 28th, 2008

Today I am 10 months old + 1 day. Daddy had to leave early this morning to finish inventory so it was me and my Mommy for most of the day together. When Daddy got back later in the day, he worked on converting my walker to be a walker/iv pole! He even painted it white to match my walker. We are going to let it dry and then I will try it out tomorrow.

Tonight my parents were getting me ready for bed like they usually do. Since I am still taking sponge baths, they lay me on my changing table to bathe me and do my trach and g-tube care. Since they have been doing this for 8 1/2 months they have it down to a science - or so they thought. With them both standing next to the changing table, they both happened to turn away at exactly the same time - which is the moment I decided to roll over and off the changing table. Now normally I don't do much but lay there playing with a roll of tape while they take care of me but tonight I guess I was feeling a little frisky. Daddy turned just as I went falling past him. Mommy turned around when she heard me hit the floor and heard Daddy start yelling. I fell directly on my face from about 3 1/2 feet to the hardwood floor below. Mommy scooped me up and it took a moment before I started crying really hard. She rushed me into the bathroom (not sure why, I think she was in shock) and within a minute or two I had stopped crying. There was a red spot on my forehead and a small cut on the inside of my mouth where my top tooth cut into my lip. Although I seemed fine, my parents were really worried because of my recent jaw surgery and what damage may have been done.

Since Palo Alto is at least two hours away in the car, my parents rushed me to the car to head to the ER at UC Davis. We got checked in right away and luckily at 8:30 on a Saturday night there wasn't a lot going on so we were put directly into a room. The resident came to get the general info and after about an hour the ENT on call came down to check on us. Since UC Davis didn't do the surgery and they only do external distractions he pretty much decided that we needed to go back to Palo Alto for follow up. He ordered some xrays while they called the on call ENT at Lucile Packard Children's Hospital. The resident returned and let us know that the ENT at Lucile Packard thought it highly unlikely I had any real damage. Despite being sleepy I was pretty quiet and had times where I would smile and laugh for my parents - so they figured my jaw probably wasn't broken or I would be a lot more sad.

A few hours in, my parents took me to have some xrays done. Now the person checking me in remembered me from the first time I came in through the ER a few months ago. Then, the resident thought I looked familiar as well. Finally, my parents recognized two of the three radiology techs - and they hadn't forgotten me either. My parents don't necessarily think it is a good thing that the folks at the ER know me by name! The tech taking the xrays only knew that I had come in for a fall so when he came out after viewing the xrays he looked kind of concerned. He asked my parents, "Did you know that your daughter has some hardware on her jaw?" My parents tried not to crack up - I think Mommy made a sarcastic comment like, "No, really?" Since they don't do internal distractions at UC Davis, the really couldn't tell if there was any damage to the distractors or the jaw so they watched me for another hour or so to verify I didn't have a concussion and then sent me on my way. They were given instructions to follow up with Dr. Schendell's nurse tomorrow.

I cried all the way home (it was 12:30 by now and I hadn't had my nightime snack and I hadn't really slept since noon). Lucille had met my parents at the ER and came home with us, so she helped my Mommy get me ready for bed. She had to rock me for a few minutes but once the Tylenol took effect I fell asleep pretty quickly. I woke about 45 minutes later and played in my crib for about 1/2 hour and then fell back to sleep until 6:15. What a night!

Peyton Nicole Smith

Friday, June 27th, 20008

As I am getting older, it is taking more nad more to keep me entertained. My parents are going to brainstorm a way to alter my walker to keep me on the go even when I am on a feeding. Mommy even ordered a few new toys from Toys R Us to give me some other options during the day besides the walker, exersaucer and floor time.

I got a package from my Grandma and Papa Smith today. It had two cute pairs of sandals, a summer outfit and a little dragon. The dragon and I became friends right away but I wasn't a big fan of the shoes and kept trying to kick them off. They are still a little big for me but my parents hope I grow in to them soon since they are just so cute. Thanks Grandma and Papa!

Daddy had to work late tonight to have inventory counted, so it was just me and my Mommy for a long time. Since I have had so much trouble falling asleep lately Mommy was so happy when I fell right to sleep tonight. Daddy got home a little before 10 and waited up for Marianne. While they were talking about me, I suddenly lifted my head up and looked at them which surprised them both! About 45 minutes later, though, I was back to sleep for good.

Peyton Nicole Smith

Friday, June 27, 2008

Thursday, June 26th, 2008

After an uneventful day it was time again for the nightly routine. It was Mommy's night tonight and she was sure hoping I would be easy on her. I played in my crib for about 15 minutes and then it was 30 minutes of straight crying. Mommy finally broke down and got me out of my crib and started rocking me. It took about 15 minutes for me to fall asleep. Then Daddy brought my brothers out for a potty break. Chili saw something on TV and started barking and I was awake again. Mommy was pretty steamed! Another 15 minutes of rocking and I was asleep again. Mommy tiptoed to my crib to put me in. She breathed a sigh of relief when I stayed asleep. She let me sleep for another 10 minutes of so to make sure I was good and asleep before attaching me back to my trach mist. Unfortunately for her, that was enough to wake me up again. I cried and rolled around for a few more minutes but eventually feel back to sleep.

Mommy was feeling pretty good about things when Marianne arrived a few minutes later. She and Daddy were asleep themselves by 11 but midnight brought a knock on the door. My extension set had sprung a leak - so my clothes and bedding all had to be changed. This didn't happen without me waking up and crying, though. After I was all dry, Mommy left me with Marianne and hoped I would fall asleep for her soon.

Peyton Nicole Smith

Thursday, June 26, 2008

Wednesday, June 25th, 2008

Today was my visit at Shriner's. The check in process was a little different today, though. I got checked in by a clown. I was fascinated by his red hair but was a little on the wary side.

After a few minutes in the waiting room we were shown up to the second floor where the anesthesiologist was waiting for us. He checked me out and asked my Mommy a lot of questions. He thinks I am a good candidate for anesthesia so he will pass that info on to Dr James so we can get surgery scheduled.

The rest of the day I played off and on with Lucille. Then I played around on the floor in the evening with my parens and my brothers. Mommy likes to give me some naked or near naked times in the evening since I like it so much. I am happy and much more active when I don't have as many clothes on. Hmmm... I wonder what future career paths involve little to no clothing?

Peyton Nicole Smith

Wednesday, June 25, 2008

Tuesday, June 24th, 2008

Terry came by for her first visit since my surgery. Originally, we were supposed to go to Shriner's today but that got cancelled and rescheduled for tomorrow instead. Terry brought some new toys for me to play with during our session. I liked the puzzle with different shapes and figured it out pretty quickly. I also liked her big book of baby faces.

Best Buy called today and said they couldn't fix the camera so they would be exchanging it so Daddy got it tonight so we could take some new pictures right away for the blog.

Since Terry was here in the late afternoon, I didn't get my last nap of the day. I was getting pretty tired in the evening so Mommy thought for sure I would go to sleep right away tonight. I cried for 45 minutes straight so Mommy rocked me to sleep. As soon as she put me down I woke back up. Mommy let me cry a little longer and then rocked me to sleep again. Sure enough, as soon as she put me down I was back awake again. Mommy let me cry in my crib for about 30 minutes until Marianne showed up at 10. Mommy told her that it was a battle of wills and that I was winning the battle at this point. Mommy told Marianne that I was just fine and just wanting for Mommy to hold me. To prove the point, Mommy picked me up and right away I stopped crying and gave Marianne a big grin. Mommy was off to bed and I whimpered a little until I figured out Mommy wasn't coming back and then turned over and went to sleep within just a few minutes. Mommy told Daddy that she isn't sure she will survive my childhood if this isn't just a short-lived phase!

Peyton Nicole Smith

Tuesday, June 24, 2008

Monday, June 23rd, 2008

So Mommy is officially in mourning. No, someone didn't die. But it feels a little like it. Today was my 9 month well child appointment with my pediatrician, Dr Scott. It had been rescheduled due to my surgery so I am closer to 10 months old at this point. At weigh in I was only 14 lbs 2 ozs. Mommy has a follow up appointment with my GI next Monday so hopefully we'll devise a plan to get me gaining weight again. When the nurse came in to check my vitals, she accidentally let slip that Dr Scott is moving to Vermont!! When Dr Scott came in she explained that she is moving to Vermont to be closer to her parents, and this would be our last visit together. She is referring us to her friend who is also a pediatrician, Dr Emge, but Mommy is still very sad. Mommy gave her my blog address so she can follow my progress. Dr Scott has been such a good doctor - very responsive to all the calls from Mommy (and there were a lot in the beginning). Mommy got a little teary-eyed and after a kiss for me and hug for Mommy, it was time to say goodbye. If you are reading this Dr Scott, good luck in Vermont. We will miss you!

On a happy note, Happy Birthday cousin Gavin! Love you and miss you! Hope you had a good day at Boondocks.

Peyton Nicole Smith

Monday, June 23, 2008

Sunday, June 22nd, 2008

This is a picture of me sleeping - of which I did precious little of this entire weekend. On Sunday, Mommy's back muscles on her left side (where she always carries me) were killing her so Daddy had her go rest several times during the day while he took care of me. I was extra happy today, but only took 1/2 hour nap all day.

In the evening I was getting a little restless so my parents took me and my brothers on a walk. There have been a lot of fires in the area so it was kind of smokey outside so it wasn't a long walk but we were all glad to get out and stretch our legs.

By 7 pm I was exhausted. My parents did my trach change and I was asleep by 7:15. Mommy breathed a sigh of relief, I was down for the night. Just kidding!!! By 8 pm I was awake and refreshed from my nap. When Marianne showed up at 10 I was still rolling around in my crib, finally going to sleep a little after 11. My parents aren't sure what this phase is but they hope it ends soon!

Peyton Nicole Smith

Saturday, June 21, 2008

Saturday, June 21st, 2008

No, Mommy didn't get the camera fixed yet, but good thing for the camera on her Blackberry. The pictures aren't great since I wouldn't stop moving, but at least you can see some updated pictures of my scar and my head without the pins.

After falling asleep so late last night you would have thought I would have slept in. Nope! I was up by a quarter after 6 am. By the time Sarah showed up at 12:30 for her shift today, I had gotten all of 15 minutes of a nap in 6 hours. I was just falling asleep when she got here so my parents figured I would take a nice long nap for her. Nope! I slept about 30 minutes and then was awake the rest of the day.

My parents got me a few toys while they were out together today. The best was a set of $1 maraca's with stars and stripes that my parents found at Target. They were a big hit! Since I love my plastic Elmo so much, my parents also got me a stuffed Elmo. Now that I am getting older there are lots of cool toys to play with - my parents had to refrain from buying everything they thought I would like so they only ended up buying a few additional toys and headed home.

Then, while Daddy cleaned his guns, Mommy used the SpaceBags she got at Target (As seen on tv...) and packed away all of the clothes I can't fit anymore, a bunch of baby blankets and bedding, stuffed animals and her wedding dress.

Yesterday, while Mommy was at the grocery store, she bought a bunch of stage 2 baby foods. They are mixtures of different flavors like apple cherry custard and banana yogurt. Mommy also bought Gerber's LilDippers (see the picture above). It is a way Mommy can allow me to take small tastes of baby food and feed myself. The feeding therapist gave us the green light to try a little baby food each day to experiment with different textures and tastes. Yesterday and today I had the banana yogurt - it was yummy! I was all smiles when I got to taste the baby food - sticking out my tongue to get more. Then when all the food was gone I would chew just a little on the LilDipper and move it around in my mouth. Just a few days ago when Karen was here, I would barely open my mouth at all but now that the pins are gone I am opening my mouth much wider and my parents got to see my tongue for the first time since the surgery.
It's been a long day (with very little sleep) so I am off to bed!

Peyton Nicole Smith

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 19, 2008

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 18, 2008

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 17, 2008

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 15, 2008

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

Friday, June 13, 2008

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 11, 2008

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 10, 2008

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

Monday, June 9, 2008

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 7, 2008

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

Friday, June 6th, 2008

Today there were times I was happy and then other times not so much. Marianne left at 7 and Mommy got up about 6 to see how I was doing. I spent a little time in my walker but wanted to be held most of the time. Marianne said I did just fine on the Pedialite and only woke up twice - about 15 minutes each time. Lucille showed up at 8:30. She was so happy to see me, although I didn't want much to do with her this morning. Mommy rocked me to sleep about 9:30. At 10 am while I was still sleeping, Daddy gave me my Tylenol. After 30 minutes it takes effect so my parents can turn the screws. A little after 10:30 I woke up and it was time to turn the screws. I was definately not happy but after about 30 minutes I calmed down enough that Mommy could give me to Lucille. Then, my parents and Papa went to get something to eat and pick up my brothers from boarding.

Henry and Chili were so happy to see my parents and each other! It's the longest they have spent apart. When they all got home Lucille let them know I had done just fine while they were gone. About that time, Sherry from the home health agency showed up to review my new plan of care. She was there about two hours. During that time, I was playing on the floor where she could see me. As Mommy explained all of my symptoms, Sherry asked a question - when was the last time I had a dirty diaper? Mommy said it had been sometime Saturday. A few minutes later, I threw up a little and it was orange. Now my parents had given me my Tylenol almost five hours earlier but it obviously wasn't moving through too quickly Also, when they changed my diaper, the area around my button was soaking wet and also orange. Sherry was pretty sure that I was constipated. She recommended that Mommy call my pediatrician to see what she would say since my GI never ended up calling back.
After Sherry left I went down for a short nap and then it was time to turn my screws again. I was pretty upset so Mommy walked me outside as Lucille left for the night. The rest of the evening I was fussy off and on. When Mommy didn't end up hearing from the pediatrician, she put a call into the oncall pediatrician. Dr Chang called back and recommended adding prune juice to my regular formula feedings. Mommy and Papa made up a big batch for the next 24 hours. I went to sleep pretty quickly but was very restless and ended up waking up right before Marianne showed up at 11 pm. She was also concerned that I hadn't had a dirty diaper in so long so she thought it would be best to discontinue the formula feeding and change it back to Pedialite but add prunce juice to it. That would allow me to stay hydrated and get the prune juice but prevent me from getting more constipated from the formula. I was crying as my parents went off to bed but it only took a few minutes and Marianne had me back to sleep.

Peyton Nicole Smith