Saturday, January 31, 2009

Friday, January 30th, 2009

Aunt Kristin got us started on Gymboree's Bubble Oodles and they have been such a big hit. In fact, we are starting to run low so my parents stocked up and bought four more. Daddy will blow bubbles for me as long as I am wearing my speaking valve. As soon as I take it off, the bubble blowing stops. The first time they tried this I was not too thrilled with the idea since previously I got have bubbles whenever I asked for it - no strings attached - but now it is used as a reward. I feel a little gipped to be honest but what can I do - I can't reach the bubbles on my own and even if I could, it's a little difficult to blow bubbles using a trach : ) I guess I will just have to go along with the plan.

Peyton Nicole Smith

Friday, January 30, 2009

Thursday, January 29th, 2009

Guess what arrived today - my new big girl potty! I think Mommy was a lot more enthusiastic about it then I was but I sat on it a few times (for a millisecond) to make her happy. Without too much detail I can say that the potty was christened today but not because I actually sat down and used it like a big girl. Mommy did demo it for me though with the contents of a diaper. I was excited to empty the potty into the toilet and flush but the rest of the process wasn't that much of a hit. When Daddy got home, he read me my "Once Upon a Potty" story which talked a lot about Wee-Wee and Poo-Poo. Daddy looked thrilled! It was a lot of new experiences and words today - but Mommy is pretty happy that when she asks where my "potty" is I sign the word and point it out to her so that is a good first step in potty training.

My parents got a little excitement tonight when once again - my Mic-KEY button balloon popped and they had to put the back up in. They are both frustrated at how many button changes they have had to do in the last 4-5 months due to the balloon failing. Mommy is going to follow up with the manufacturer tomorrow to see what the process is to file a complaint as something doesn't seem quite right.
Peyton Nicole Smith

Thursday, January 29, 2009

Wednesday, January 28th, 2009

It was a busy day for Mommy and I. Mid-morning I had a feeding therapy appointment with Karen. She could tell pretty quickly that I had made lots of improvement since her last visit. I was willing to sit in my highchair the whole time as long as I kept getting fed! I had crushed up crackers, veggie sticks and cheerios. I would let Karen give me bites off a spoon while I put some in my mouth using my fingers. I also showed off how I can lick crumbs off the spon. I gagged a tiny bit a few times but nothing significant so Karen was pretty happy. Later, Karen gave me some pixie stick and I had a pretty big reaction to the sour taste - but wasn't put off too much because I wanted more! My parents are going to continue to work with me by giving me different foods and flavors that can be crushed up to a finer consistency.
In the afternoon, Sherry came back from Maxim, the nursing agency for the 30 day review of my plan of care. She was impressed with my progress since last month to get me off of my night feeds and what a good walker I have become.
Peyton Nicole Smith

Tuesday, January 27, 2009

Tuesday, January 27th, 2009

A girl can't have too many friends - here I am walking around (while eating mind you) with Elmo and Sock Monkey. Mommy is following close behind with the camera and my backpack with feeding pump - she doesn't slow me down much!

I had an appointment today with my hard of hearing teacher, Kiersten. Mommy returned some DVD's and "checked out" a few more so she can keep one step ahead of me with new signs. I LOVE my Baby Signing Times videos - but there are only four in the series. We are moving on to the Signing Time series but they just don't hold my attention as much - more talking, less singing. So when Mommy puts them on - it is more for her benefit to learn the signs herself and teach me later.

Peyton Nicole Smith

Monday, January 26th, 2009

Did my parents tell you how smart I am? If not, I proved to them again that I am a force to be reckoned with. Deborah and Wendy came out from Alta Regional to so a speech assessment on me. It really just involved them playing with me, asking me questions and watching how I was using sign to communicate. Deborah felt that until I start allowing my speaking valve to stay on for longer periods of time it wasn't going to be really helpful to start structured speech therapy visits. Actually, Deborah said that I am on a 22-24 month old level of communciation with my sign language so as far as communication goes I am pretty advanced! Deborah and Wendy said I am a real smartie pants!

At the end of the session, Deborah sang "Twinkle Twinkle Little Star" while also signing. I kept signing "again" so she would repeat the song. After a few times, Deborah needed to leave. I signed to Mommy that I wanted to get down off her lap and I walked over to my Fisher Price Learning House. On the top is a round wheel that has a sun and a moon. When it is turned to the moon it plays the "Twinkle Twinkle Little Star" song without any words. I reached up, turned the wheel until it got to the moon and the song started up. Mommy, Deborah, Wendy and Lucille all seemed shocked for a moment. Mommy wondered if it was just a coincidence that I recognized that what Deborah sang and what my house played were the same song so she tested me. A few hours later, she began singing "Itsy Bitsy Spider". Sure enough, I walked over to my Learning House and pressed the button on the water spout until "Itsy Bitsy Spider" came on. Pretty smart huh!

Peyton Nicole Smith

Monday, January 26, 2009

Sunday, January 25th, 2009

You can see my above signing "cow" while holding a plastic cow. Most of the time I can identify the animal but I'm not always 100% accurate. Today I was playing with the small plastic animals from a Noah's ark set. So as you would expect there are two of each animal - birds, giraffes, turtles, etc. They are all mixed up in a large container for me to play with. At some point I walked over to Mommy with an animal in each hand - and they were a matching set - a lion and lioness. Mommy was pretty impressed that out of all the animals I picked two that were the same but she had to laugh when I signed "dog". They do look a lot like dogs and as Daddy pointed out to Mommy we have a matching "set" of weanie dogs.
Speaking of my furry brothers, Henry pretty much ignores me unless I have food. Since he is so athletic he just jumps up on furniture to get away from me when I am bothering him. Chili on the other hand, has never been the athlete - he can't really jump up on furniture unless he gets a good running start - and even then it's iffy. Chili also happens to be a little afraid of me and I have picked up on that. Now that I am a little steadier (and faster) on my feet, I like to chase him around the house. I know it is not nice to torment Chili but it is just so much fun! He's starting to get smarter though, and hide under the table so I don't notice him. Mommy tried to assure my brothers that eventually we will be good friends but I'm not sure Chili believes her. The small amount of food I throw his way doesn't seem worth it when I am chasing him around the house!
Peyton Nicole Smith

Saturday, January 24, 2009

Saturday, January 24th, 2009

The weather still wasn't nice enough to spend much time outside so it was a quiet day at home. You can see me above watching the Wiggles at 7 am. Mommy wishes these guys were on more often because it keeps me entertained for a good 1/2 hour while she gets down a cup of coffee.

I am getting to be such an expert at walking that I am moving on to other things like bending down to get items off the floor. A week ago I was falling most of the time but now I am a pro. My parents are just amazed at how quickly I master new things.

My newest sign is "hurt" - as in I fell down and hurt myself or Mommy told me no and my feelings are hurt. I use it about as often as "sad" now - not because I spend so much time falling but more so because I get told no a lot!

Peyton Nicole Smith

Friday, January 23rd, 2009

The morning started off with a little excitement. At the end of my 6:30 feeding I threw up a little on Mommy. She started getting all worried that I might not be tolerating my new day feedings but the answer was revealed soon enough when I had four stinky diapers - I was all backed up. After that, no more vomiting!
In the evening while we were waiting for Daddy to get home, Mommy let me have a veggie stick. Since Mommy doesn't know the sign for chips - she has me sign "cracker" instead. I would break off a tiny piece in my mouth and then wash it down with a sip of milk. A few times when I would swallow some of the veggie stick I would gag but I eventually got it down so Mommy considers that progress.
Peyton Nicole Smith

Friday, January 23, 2009

Thursday, January 22nd, 2009

What does a hungry girl look like? Maybe like this! Here I am trying to get some milk out of my feeding tube since I went a whole night without eating. The biggest change? Instead of getting up around 5:30 now I am getting up around 5:00 - maybe it is the sound of my tummy rumbling that is causing me to wake up!
Today was my first official day with all of my volume in five bolus feeds. You wouldn't have known there was any difference - I played and slept like I usually do. Mommy thinks this has gone way too smoothly thus far!
Peyton Nicole Smith

Thursday, January 22, 2009

Wednesday, January 21st, 2009

Yesterday, not long after a diaper change I went and got myself a diaper and brought it to Lucille. I kept signing "diaper" even though Lucille said I shouldn't need a diaper change so soon. Because I was so insistent, Lucille decided to check and sure enough - I had a messy diaper. Now Mommy has been having me throw away my diapers after a diaper change, but I have never been taught to go get a new diaper so Mommy was pretty impressed. This seems to be a sign of early readiness for potty training. So Mommy went on a search and found me a potty on line. It comes with a book, a DVD and a dolly with her very own potty. Mommy can't wait to get started!

Peyton Nicole Smith

Wednesday, January 21, 2009

Tuesday, January 20th, 2009

I don't know much about politics but it was pretty clear today was a big day for the country. I tried to be helpful and go down for my nap just in time so Lucille could focus on watching the inaguration of President Obama.
In the afternoon, Karen and Terry came by for a joint visit with me. They brought some new toys for me to try out. Terry had laminated some pictures of my favorite things and put magnets on the back so now I can start to let my parents and nurses know what I want by pulling them off the board. Most of the pictures I have a sign for me but it's another way I can communicate with people about what I want - espesically good for when people don't know sign language like I do.
Tonight is the last night that I get a feeding. It is moving very slowly - only 4 cc's over an hour and then tomorrow night - nothing, nada, zilch. Wish us luck that I still tolerate my day feedings and most importantly - I continue sleeping at night even though my tummy isn't full!
Peyton Nicole Smith

Tuesday, January 20, 2009

Monday, January 19th, 2009

My transition off of night feeds is going really well - about half way there and no problems! Daddy is working late this week so it leaves lots of Mommy/daughter time. I didn't take an afternoon nap and should have been a real grouch but I wasn't. Mommy put me in my highchair to have a feeding session. So much for mushy baby food, I want stuff with texture and cruch because I like to bite! Mommy still crushes it up a little so I don't bite off more than I can chew (literally). Mommy would get a little in with my spoon but eventually I wanted to control the feeding session and took the spoon away.
In the evening, Mommy introduced me to the classic summer treat - Otter Pops. She broke it up and put it in my feeding bag - I was a big fan! What more could I ask for - an Otter Pop in my feeding bag and watching Baby Signing Times?
Peyton Nicole Smith

Sunday, January 18, 2009

Sunday, January 18th, 2009

So apparently Mommy was right - the proof was in the pudding - (she says I don't have to explain, you'll get the general idea). No this is not the actual hair elastic that I swallowed and Mommy found later in my diaper, but this is the same kind sitting next to a penny so you have some idea of the size. Mommy is not sure if she should be thrilled that I was actually able to swallow it eventually or if she should be terrified that it was so dramatic with all the gagging and vomiting. Regardless, my parents are a little gun shy about small items. All the small hair elastics went into the garbage can and Daddy raided my drawer of rocks and pulled out all the ones that potentially could fit in my mouth and put those away where I can't find them. Mommy was a little relieved, though, that my transition off of night feeds wasn't the reason for the vomiting so I continued on today as if nothing had happened. Just four more days and I will be off of night feedings!

Peyton Nicole Smith

Saturday, January 17th, 2009

Mommy thought we had plenty of excitement today - after all we went for our first walk of the new year - Mommy, Daddy, me and the boys. I am also on the road to getting off of my night feeds. Today I went from four day feeds to five day feeds - a big jump for me. About a 1/2 hour after my last day feed I was starting to get close to bedtime. To keep me entertained just a little longer so I was closer to that 7 pm bathtime - my parents let me play with my hair stuff. A girl with as much hair as I have needs a lot of hair stuff. My parents keep it in a plastic container with three drawers. The bottom drawer is my combs and brushes. The middle drawer is all of my barettes and clippies and the top drawer is all my elastics or scrunchies. Since everything is so colorful, I like to take down the container several times a day, throw everything around and then let Mommy sort everything back into the appropriate drawers (in her true OCD fashion). Daddy sometimes likes to give me the hair stuff to play with just to drive Mommy nuts - or at least that's what she thinks.

So my parents are watching tv, I am on the floor quietly playing with my hair stuff and that should have been the first clue that something bad was about to happen. Suddenly, I turned to look at Mommy and started vomiting all over myself. Then there was a lot of scary coughing and gagging. Mommy had a really bad feeling that I had tried to eat one of my smaller hair elastics but Daddy wasn't so sure. He thought maybe it was the extra feeding just a little while before the triggered the vomiting. Mommy tried to do a quick mouth sweep with her pinkie in my mouth to be sure, but because my jaw is so small and my top jaw is already outgrowing my jaw distraction, she couldn't really get it in very far to check. I wasn't turning blue or anything but I was certainly breathing a little different then normal so my parents did an emergency trach change. That seemed to help a little and within moments I was back signing that I wanted water and ready to play with the hair stuff again. Crisis averted - right? My parents weren't so sure what had happened, but Mommy said if she was right, the proof would be in the pudding. I'm not sure about pudding but there apparently would be proof at some point.

So off to bed I went with a very nervous Mommy and a Daddy trying to reassure her that everything was fine. Thank goodness my sats were normal and I went to sleep without a problem.

Peyton Nicole Smith

Friday, January 16th, 2009

Mommy got a call from Jan Pryor at UC Davis. She is the one who does VitalStim on adults.
Here is some information on VitalStim:

Specialized form of neuro-muscular electrical stimulation (NMES) specifically designed to treat dysphagia. NMES has been used successfully in a wide variety of therapeutic and rehabilitative settings for many years.

Only neuro-muscular electrical stimulation device cleared by the U.S. Food and Drug Administration to treat dysphagia.

Non-invasive therapy that uses small electrical currents to stimulate the muscles responsible for swallowing while trained specialists help patients “re-educate” their throat muscles with special exercises.

Small, carefully calibrated current is delivered by specially designed electrodes, which are placed on the neck.

Current stimulates motor nerves in the throat while patient practices swallowing exercises.

Muscles responsible for swallowing contract.

Quality of the swallowing function improves.

With repeated therapy, muscles are re-educated.

Patients frequently see dramatic improvement in six to 20 treatment sessions (60 minutes each) – some in as little as three sessions.

Administered by specially trained speech therapists in both inpatient and outpatient settings.
Must be prescribed by a physician.

Effective in patients with a wide range of primary diagnoses, including stroke, head or neck cancer, respiratory conditions and degenerative neurological disorders such as Parkinson’s disease and Multiple Sclerosis.

Effective in patients of all ages – from infants and toddlers to patients in their 80s.
(You can find out more about VitalStim therapy at Because mine is a "residue issue" (can't get all the residue off my tongue) I am a good candidate as long as my pediatrician says I am okay health wise. She is going to get in touch with Dr Emge and then get back with Mommy on scheduling. We would first schedule 10 sessions and then evaluate the results to determine if we should do more sessions. Mommy is a little nervous but excited that there may be a therapy that could help me!

Peyton Nicole Smith

Friday, January 16, 2009

Thursday, January 15th, 2009

Thankfully, after all the excitement last night, today was a quiet day. You can see how great my new thumb is working in the pictures above. I am holding a coin shaped cardboard circle that I put in one of my books - and it slides down. It shows how well my thumb now works for holding something small, but you can also see that I have no problems putting the coin in the slot in the book - a very difficult task for any kid my age! Dr Michelle James did an amazing job and my parents are reminded each day that I would not have the ability to do many of the things I do in the course of the day were it not for her skill. My parents are so glad they didn't hesitate to have my old thumb removed so that I could have a new one created that actually works like it is supposed to.
Peyton Nicole Smith

Thursday, January 15, 2009

Wednesday, January 14th, 2009

Mid-morning today, Karen came by to work on feeding therapy. I sat in my high chair like a big girl. First we worked on me touching food on my tray, then moved on to touching my finger to my mouth with food on it and finally ending up with a little (very little) in my mouth. I will drink a little juice from my flexi-cup but when it comes to eating I want to eat my crackers by mouth - not mushed up on a spoon and not in a feeding bag. Unfortunately, I am not very experienced yet with chewing food so we have a ways to go before I can just be given a cracker and eat it all on my own. Karen was happy to see that I like playing with food and I don't mind different textures of food on my face or in my mouth so we are starting off a lot farther then a lot of kids she sees.
The afternoon and evening went well but when it came time for my bath, my Mommy noticed that my button seemed kind of loose. She decided not to worry about it but it came back to bite her soon enough. Mommy headed off to bed while Daddy got me settled in. I was playing with my sock monkey and rolling around and then Daddy noticed that all of a sudden I had my back to him and seemed to be hiding what I was doing. Daddy had a bad feeling and decided to check and sure enough, I was holding my MIC-key button in my hand with a big grin on my face. The button still had some water in the balloon so it hadn't completely popped but there was a slow leak and the balloon was small enough I could pull it out. Daddy grabbed me and came to find Mommy so we could put in the back up button we always try to have on hand. This is a problem, the stoma in my tummy can close very quickly and if it does it would require surgery to reopen. This is a classic ER visit reason for kids with g tubes - a closed stoma. Ironically, Mommy had expected to get my back up MIC-key button today but was surprised when it wasn't in my supply order. When she called the supply company they told her my GI hadn't faxed in the prescription yet. Mommy quickly left a message for the GI to hurry and get it in but since there was no MIC-key and it was after hours, my parents tried to put the Mini button they still had on hand. Surprise! Three times they tried to put the Mini in, it would not fit, even though it is technically the same size. However, when my parents tried to put the MIC-key back in, it went in without a problem, but with the hole in the balloon there was no way to keep it in. Mommy called the supply company and talked to the after hours pharmacist and explained the problem. Since I get a continuous feed at night, waiting until morning was not a good option because I would be losing close to half my daily volume of formula. They said they would send a driver back into the office to get a MIC-key and bring it back out. Meanwhile, my parents put the MIC-key button back in, taped it to my skin and put a bandage around my belly to secure it in place. For two hours my parents had to keep me entertained until the driver showed up. I ran around the house playing with the doggies. When that got old, my Mommy let me try out a peppermint sucker and I was a big fan! That kept me happy for quite awhile but once I started smacking my furry brothers with it, my parents had to take it away.
Around 11 pm, the button arrived and my parents put it in while Marianne watched (she's never put in a button before). Then I got a dose of Tylenol to help with soreness at the stoma site and off to sleep I went! My parents were exhausted too and were grateful a crisis had been averted.
Peyton Nicole Smith

Wednesday, January 14, 2009

Tuesday, January 13th, 2009

It was another great day. Mommy is amazed how quickly I have improved on my walking skills now that I am not coughing and throwing up all the time! Only a few falls at this point, but man are they spectacular! My wipe-out's are pretty severe but I recover quickly and it isn't long before my smile returns.

Karen, my occupational therapist, came by at 3 to play with me. I had gone down for a nap at 2:30 but had not yet fallen asleep so out of the crib I came! Despite being tired I had lots of energy and Mommy and Karen had a hard time containing me. They tried putting me on a big exercise ball to work on using my arms to help me catch myself but I wanted nothing to do with that. However, one Karen gave me some big plastic rings I had a great time putting them over Mommy's head so she could wear them like a necklace. It served a purpose though, making me stretch my arms up high to get them over Mommy's head. Mommy and Karen have to sneak in ways to exercise my shoulders and arms - but as long as it is fun it's all good.

Peyton Nicole Smith

Tuesday, January 13, 2009

Monday, January 12th, 2009

After keeping all my feedings down yesterday, Mommy moved my feedings back to 20 minutes today and success! No vomiting! I also spent less time coughing and more time playing. In the afternoon, Mommy had to wake me up about 20 minutes into my nap for my physical therapy appointment with Michael. It is so hard for Michael to keep me entertained now, if I don't like what we are doing I just get up and walk away and find something else I would rather be doing.

Terry, my special ed teacher, had asked Mommy to compile a list of my signs so she could make sure she learned them as well so we could communicate. When Mommy got done she realized I sign 70+ signs. Pretty impressive, don't ya think? My cousin, Jackson, is starting sign language classes soon. We'll be able to sign to each other - it will be lots of fun! Mommy has noticed that I will "talk" to myself using signs when I am in my crib falling asleep. I also like to "talk" to myself in the mirror - I certainly seem to have lots to say.

Peyton Nicole Smith

Sunday, January 11, 2009

Sunday, January 11th, 2009

Because I was still on hour feedings so I could keep my formula down, my parents decided it was time to put my backpack on me and see how I did. Despite the smile on my face I threw quite the fit the first time they tried it. It is a little heavy considering I only weigh 18 pounds myself. I was a little top heavy, but eventually I got used to it and walked around.
At one point tonight, Mommy got up to get the phone. When she got off she talked with Daddy for a moment. Suddenly, it seemed way too quiet and they realized I had taken off. Within just a few minutes, I had made it from the kitchen all the way down the hall and into the office. That's a long walk - espesically when all the lights were out and I did it in the dark. I am not only walking - I am starting to walk quickly to get away from my parents when they come looking for me! Lucille is going to have her hands full!

Peyton Nicole Smith

Saturday, January 10th, 2009

Just when Mommy thinks I have made it over the hurdle - it's two steps back. Yesterday I was up to my normal 20 minute feedings and so she didn't think there would be any problems today. I like to surprise her though and I did just that by vomiting all over her and me after my morning feeding. At least she had already had her first cup of morning coffee. Live and learn - Mommy moved me back to hour feedings for the rest of the day. The next feeding I vomited just a little and the rest of the day the other two feedings were fine.

I am getting to be such a big girl that now I am walking all over the house - looking for my doggies, looking for my parents or just looking for something to get me into trouble. My parents are trying to channel some of my energy into healthier avenues. Since I like the garbage can, Mommy now has me go throw my wet diapers away all by myself. When I start to get grumpy, Daddy has me go pick out a book from my book bin and bring it to him to read. It keeps me busy - at least for a little while!

Peyton Nicole Smith

Saturday, January 10, 2009

Friday, January 9th, 2009

After two days of no vomiting we had a little incident today. Mid-afternoon before my appointment with Terry, my special ed teacher, Mommy came out to check on me. I had just finished a feeding (today I was back to my 20 minute feeds) and when I saw Mommy I got excited. Mommy thinks that is what got me coughing and eventually vomiting. Later in the day, though, I took two more feedings without a problem. Mommy thinks there must be a bullseye on her that says, "Throw up here please!"

I had lots of fun playing with Terry today. She brought a book with pictures of toys velocroed to it. Whenever I would pull off the picture and hand it to Terry she would pull the toy out of her bag and I would get to play with it. Mommy gave Terry some pictures of things that I like (water bottle, my lovie, Elmo, Baby Signing Time DVD) and she is going to laminate them and put velcro on them so we can create a poster board that I can use the same way. Then I can show my parents what I want in addition to signing it.

My hand surgery got rescheduled today - but not until May 21st. Such a long way off but I think my parents are happy not to have to worry about it for awhile.

I discovered in the last few days that I have two lovies. Usually, my parents hide one in a drawer while I use the other one and then when I am asleep they switch them and throw one in the wash. I am pretty observant, though, and I noticed when Mommy was putting away the laundry that there was another lovie in the drawer. Whenever I see the second lovie I whine to get it and then I hold both of them as I make my way around the house. What can be better than two lovies!

Peyton Nicole Smith

Friday, January 9, 2009

Thursday, January 8th, 2009

If my parents thought Baby Signing Times was a hit they weren't quite prepared for how much I like my Mommy & Me Playgroup Favorites DVD. Mommy doesn't even remember where she got it, but thinks it was some free gift from some formula company at some point. I saw it a few times before our trip to Salt Lake but got to spend some quality time with it in the car to and from Salt Lake over the holidays. It has parents with their kids (that's right, no just mommies) singing and dancing to classics like Itsy Bitsy Spider and Wheels on the Bus. It also has an animated mommy and baby kangaroo. The baby is "Little Jay" and his voice drives Mommy to distraction - but I love the DVD! I can watch it over and over (and did this week when I was sick). Just to ensure she goes insane, Mommy has ordered me the Mommy & Me More Playgroup Favorites and we are waiting anxiously for it to arrive. It can't be soon enough for me.

Last night was another good night so today Mommy had my feeding go over an hour rather then the continous feedings and I did just fine - no vomiting. The coughing was at a minimum too and my energy level is increasing so my parents spend more time chasing me around the house. It's good exercise for all of us.

Peyton Nicole Smith

Thursday, January 8, 2009

Wednesday, January 7th, 2009

Instead of having surgery today, I stayed home and focused on getting better. Even without the Tylenol with Codeine I was able to get a couple good naps. Because I wasn't coughing much I also was able to keep all of my feedings down without a problem. In the afternoon I played with Mommy, Daddy and my doggies. Now that I am walking my parents will give me something to "take to Mommy" or "take to Daddy" so I can practice my walking skills. I know it is only a matter of time before I will start hearing "take out the trash" or "go put your clothes in the washer" but this is a first step!

Peyton Nicole Smith

Wednesday, January 7, 2009

Tuesday, January 6th, 2009

Recovering from this URI has been very slow - at least it seems that way. I only threw up once today because of coughing so that was an improvement. Tonight I feel asleep easily but an hour in, I woke up with a coughing fit that took a lot out of me. Unfortunately, tonight we ran out of the Tylenol with Codeine which has been great to keep my cough suppressed long enough to sleep at night. Mommy is going to see if my pediatrician would call in a refill.

Mommy found out today that my name is much more popular then she had imagined. In fact, it is the biggest jumper in 2008 for girl's names - from a ranking of 57 to 30. Mommy can't help but think it has something to do with my blog since I was born in 2007!

Peyton Nicole Smith

Tuesday, January 6, 2009

Monday, January 5th, 2009

The morning was off to another rocky start, coughing followed by vomiting and then on to my appointment for a Synagis shot. At least I slept pretty good last night!

At the doctor's office I weighed in at 18 lbs 3 ozs naked - so at least being sick hasn't stopped my progress in the weight department. The shot was over quickly and I was back to being in a pretty good mood. Throughout the day I played for a little while but would wear out quickly and take long naps. When Mommy came to relieve Lucille at 4, I sounded really dry so Mommy did some suctioning which caused coughing which you guessed it - caused vomiting. Not too much though as Mommy had Lucille slow down my feeds to a crawl today. I played in the afternoon until Daddy came home. At 6 before I could fall asleep, my parents quickly changed my trach. Then it was time for my breathing treatment and I fell asleep in Daddy's arms - maybe because I like the white noise - but probably because it was nice to have Daddy hold me. After a 30 minute nap I was wide awake and crazy happy! I played in my crib for the next 3 HOURS!!!! It certainly seemed like I was having some side effect from either the breathing treaments or the Tylenol with Codeine because I was all over that crib. In fact, Daddy caught me playing peek a boo - with myself! I finally wore myself down after Marianne arrived and fell asleep but not before Daddy had to change out my bedding and my clothes when my feeding tube became disconnected due to all the activity.

Because I am still so sick, it was not surprising to my parents that Shriner's has decided to cancel my hand surgery. They also are rescheduling my scoliosis appointment for tomorrow so I don't get other kids sick in clinic. My parents are disappointed but would rather I recover since surgery takes so much out of me. Unfortunately, Dr James is now booked out until May. Since my hand surgery would need to be done in two stages and both require 4-6 weeks in a cast it is unlikely I could get both surgeries completed before decannulation this summer. If I do get decannulated, Shriner's may not want to do any more surgeries on me for a few years as my small airway would make me a bit risky for anesthesia. My parents figure there must be some reason this is all happening and everything will work out in the end - but this cold is sure playing havoc with all the time tables they had been trying to work with. In the end, my parents are just happy I am home and recovering a little each day.

Peyton Nicole Smith

Monday, January 5, 2009

Sunday, January 4th, 2009

Mommy's "shift" started about 6 this morning. She got an update from Daddy and sent him off to bed. I slept pretty well for a few hours but all of a sudden I sat up, signed "monkey" (for the sock monkey Uncle Steve got me for Christmas) and then proceeded to start throwing up. Mommy went to get me out of my crib and then I threw up all over her as well. Oh the fun begins! Mommy had kept thanking her lucky stars that I had avoided the coughing followed by vomiting that I had experienced back in November but she celebrated too soon. After about 15 minutes of on and off vomiting I rested a moment and then I was ready to play!
Mommy had me hooked up to the trach mist so I only had a few feet of tube length before I ran out so Mommy brought some toys over for me to play with. We also watched "Baby Signing Times" and "Mommy & Me Playgroup Favorites" over and over and over. After a few hours I was wiped out and went back down for another nap. While I was sleeping Daddy took over watching me and Mommy went to get my medicine filled. Daddy started my feeding really slow (back to my continous rate) and this time I was able to keep it down.
Mommy gave me a quick bath in the evening but then I started having a coughing fit that would not stop. It was time for a breathing treatment anyway but it took a long time for me to settle down enough that the coughing stopped. I was pretty worn out and slept in Mommy's arms for an hour or so. She decided to put me down in my crib for the night but as soon as she did I woke up. I had some energy so I played in my crib for the next hour or so before finally falling asleep again. Marianne has me tonight so my Daddy gave her an update and showed her how to use the nebulizer machine for my breathing treatments and my parents were off to a better night's sleep then they have had in a few days.

Peyton Nicole Smith