Sunday, November 29th, 2009

Although it was still windy, it was warmer so my parents kept their promise to take me to the park. They walked a little farther to a playground that has more for me to do. The panels on the equipment teach Spanish, braille and sign language. For fun, my parents put me in front of the panel with the letters of the alphabet next to their sign. They started off by asking me to point to letter "p" and I found it right away. Then the asked me to find letter "i". I actually pointed to the letter "l" but you can see how I might think it was an i. I followed it up by finding "a" and "c" when my parents asked. About that time, Daddy thought it would be great to get this on video and see how many letters I actually knew but of course once the camera was rolling I was bored with the game and ready to climb the ladder in front of the panel instead.

Peyton Nicole Smith

Saturday, November 28th, 2009

I am such a big fan of the "sticker box" that I am starting to request to sit on the potty. While I sift through the stickers to find the perfect one, Mommy has me sit on the potty. Since it is a long process to pick one out (there are just so many choices) it's probably not surprising that when I stood up this morning Mommy found I had actually used the potty! This didn't only happen once today, though, later in the day I requested to get on the potty again and sure enough I used it! Now Mommy does have the photos to prove it but Daddy said there are just certain things you don't put on the blog!

It was time for dance class today and with it being so cold and windy I wasn't surprised when only one other little girl showed up. I had another fall during class and this time I fell back and hit my head. I was a little stunned for a moment but got back up pretty quickly and shook it off. Later, it was time for our goodbye song. The parents hold the kids on their lap while singing a slow version of "You are my sunshine". Usually, I really like this time with Mommy rocking me. Today, though, I started sobbing. Mommy asked if I was sad and I shook my head yes. Mommy still isn't sure what I was sad about - the song, class ending, the closed head injury? I perked right back up when it was time for Miss Kim to hand out stickers so we'll just have to wait to see if it happens again next week!

Peyton Nicole Smith

Friday, November 27th, 2009

After the disappointment of yesterday, my parents didn't waste any time getting out to the tree lot this morning. It was chilly and windy and ready to rain so we didn't have a lot of time to waste. Since everyone was still out shopping we had no crowds to deal with and plenty of beautiful trees to choose from. It didn't take long to find a great tree and after a few pictures we got it tied down and headed home. Lesson learned - don't wear dress shoes to a tree lot - they are usually pretty muddy!

Today I went down for a nap without a problem and when I woke up Daddy had the tree in the stand with lights already strung and ready to decorate. I spent more time playing with the ornaments and taking them off the tree than actually hanging them but nothing got broken (yet). After all the dinner prep yesterday my parents decided to go out for dinner tonight and since Jeff was in the neighborhood he met us. We headed for someplace that we knew would be empty on a Friday night - IHOP! By the time we got home it was bedtime so I got into my Christmas flannel jammies and went right to bed.

Peyton Nicole Smith

Thursday, November 26th, 2009

It was a chilly Thanksgiving morning but my parents had promised me a Christmas tree so shopping we went. Unfortunately this is one of those lessons every parent must learn - never make a promise you can't keep! Apparently, Christmas tree lots are closed on Thanksgiving so we went home empty handed.

My parents tried to put me down for a nap since I would need all my energy for playing with Uncle Jeff but after having a few sips of Pepsi prior to nap time I was not going to sleep. When Jeff showed up a few minutes later all bets were off and I got up to play. Daddy and Jeff kept me busy while Mommy got to work on our Thanksgiving meal.

Towards early evening my lack of a naptime started to catch up with me and there was lots of tripping and falling as I tired out. My parents got me into bed but it wasn't until Jeff left to go home that I finally wound down enough to fall asleep.

Hope everyone had a Happy Thanksgiving!

Peyton Nicole Smith

Wednesday, November 25th, 2009

How can you have a bad day when you the mail arrives with presents for you? First there was an Elmo video from Aunt Kristin, Uncle Lonnie and cousin Jackson. And later in the day there was a present waiting for me from my friends Sophia and Brighton - a Candy Land game. Now this isn't like the Candy Land game you may have grown up with - this is much more fun. When you pull the candy cane handle out pops plastic tokens - pretty much like a slot machine. I didn't much care to play the game but spent hours putting the tokens back in and pulling the handle so they would shoot back out - heaven!

Peyton Nicole Smith

Tuesday, November 24th, 2009

I had an early appointment this morning with my endocrinologist. Mommy is becoming a fan of being the first appointment of the day - usually a lot less waiting! We had to do the standard height, weight and head circumference checks which I sobbed through as usual. Fully clothed I weighed in at 23 pounds. When Dr Long came in to see me he let Mommy know that since my last appointment I had a little growth spurt. In fact, he doesn't see any reason to keep following me since I am consistently staying on my growth curve - it's just my growth curve is not comparable to most kids my age. That brought up an interesting discussion around the term "failure to thrive". One of my night nurses has told the agency that I am failing to thrive. Since Mommy has never had one single doctor of mine use that term she was a little surprised to hear it. As she talked to Dr Long she found there are several definitions of failure to thrive.

One Mommy found on line said: "Failure to thrive (FTT) is used to describe a delay in a child's growth or development. It is usually applied to infants and children up to two years of age who do not gain or maintain weight as they should. Failure to thrive is not a specific disease, but rather a cluster of symptoms which may come from a variety of sources."

As Dr Long explained it some may choose to classify me as failure to thrive due to the mere fact that I am smaller than most children my age. From his standpoint, though, I do not qualify as failure to thrive because although my growth curve is well below the average it is predictable and I am gaining weight. As with other labels sometimes it works to someone's advantage to be "diagnosed" to qualify for additional resources. So that got Mommy thinking - would a little person be considered failure to thrive? Dr Long said because being smaller than average is part of the syndrome that wouldn't be the case. Since there are so few cases of Nager it isn't always clear what symptoms are considered part of the syndrome and which aren't. However, many online sources list short stature as universal to Nager cases. Based on my current growth curve Dr Long expects me to be somewhere around 5' tall. Since Mommy is only 5' 1'' it's hard to say if my short stature may be me taking after Mommy or part of Nager or a combination of the two. Since only 5% of the female population are 5' or smaller Mommy might have been considered failure to thrive based on current definitions! So as far as the endocrinologist and my gastroenterologist are concerned I am growing just fine thank you - I'm just on the petite side!

Peyton Nicole Smith

Monday, November 23rd, 2009

Mommy spent some time tonight starting to organize for our trip back to Salt Lake for Christmas. She started off by printing off my two page "Travel with Peyton" list. I have included it below since it is pretty extensive and now you'll understand why I come with so much luggage! Keep in mind this list doesn't include the basics like clothes and toys - just all the "extras".

Miscellaneous
Medical record on flash drive
Emergency contact list
Hearing aids
Hearing aid batteries
Toothbrush

Toothpaste
Formula
Containers for mixing
Speaking valve

Medications
Xopenex
Pulmicort
Diaper rash ointment
Bactroban
Steroid cream
Miralax
Silver nitrate sticks
Tylenol w/codeine
Tylenol infant drops
Ibuprofin infant drops
Suppositories
Enemas
Culturelle

Machines
Nebulizer
Feeding pump w/adapter
Feeding pump backpack
Suction machine w/adapter
Suction machine bag
Trach Mist machine w/adapter
Trach heater
Pulse oximeter w/adapter

Supplies
Saline bullets
Tape
Alcohol prep pads
3.0 Peds trach
3.5 Peds trach
Trach ties
Q tips
Feeding bags
Nebulizer jar
Trach mist drainage bag
Trach mist mask
Blue corrugated tubing
Suction tubing
Bacteria filter
G tube
Suction jar
Catheter
Thermometer
Syringes
Diapers
Wipes
Nasal bulb
HME’s
Mic-KEY extensions
IV sponges
Pulse oximeter sensors
Tilson trach guard
Delee suction catheter (manual)
60 ml syringe (manual feeds)
Scissors
Tweezers
Tubing for oxygen tank
Adaptor for oxygen tank

While she was working to organize my medical supplies I got to try on my mittens and hat and I think they are great - bring on the snow!

Peyton Nicole Smith

Sunday, November 22nd, 2009

So what does a Daddy do when I won't sit still and get my toenails painted - he moves on to Henry of course!

Mommy got a little shock today. My feeding had just ended and she disconnected me and then went to the sink to start cleaning the bag and extension tubing. When she looked over, she saw me sitting next to my medical supply drawers with an extension tubing attached to my button and a puddle of milk next to me. She figured she had gotten a little flustered and had disconnected the bag but left the extension set still attached to my button. So she removed it, cleaned up the milk and went back to the sink to finish cleaning the bag. When she looked at the bag she realized the extension tubing was still attached. So what does that mean? It means I went over to the supply drawer, took out another extension tubing, attached it to my button and then because I didn't have the tubing clamped off some of the milk from my full tummy came leaking back out. Smart girl right? My parents give me another year and they figure they can teach me how to make my own formula, fill the bag and hook myself up and then they can stay in bed a few hours longer on the weekends!

Peyton Nicole Smith

Saturday, November 21st, 2009

All ready for dance class! Although the numbers are steadily dwindling (it was only me and one other girl this week) I am still having a good time. The only problem is that in ballet slippers all the kids in the class keep wiping out on the floors in the dance room. So far there have been no serious injuries but with kids falling left and right it's a little nerve wracking for the parents and the teacher.

Peyton Nicole Smith

Friday, November 20th, 2009

With the Christmas tree and nativity set up it is all Christmas all the time in our house. Rudolph is playing almost 24/7 at this point and with my new antlers I can pretend to be a reindeer too. My parents aren't sure what I am going to do once Christmas is over.

Peyton Nicole Smith

Thursday, November 18th, 2009

It's beginning to look a lot like Christmas! Since there aren't any real trees to be bought yet, Mommy and I went and got a small fake one so we could start decorating for Dax. Daddy says it's fun to come home and see the lights from the tree shining through the window. I LOVE the Christmas tree lights and go over all day long to play with the ornamets and nativity scene. Merry Christmas to Dax and his family from the Smith's!

Peyton Nicole Smith

Wednesday, November 18th, 2009

If you have been waiting for a reason to pull out all your Christmas decorations (and hesitated because it wasn't even Thanksgiving yet) then you might want to rethink that decision. Please consider decorating early this year for Dax. You can find out more at http://www.decoratefordax.com/ but here is some information from their website.

What is “Decorate for Dax?”
Dax is a two-year-old resident of Washington, IL who has been battling an extremely rare form of leukemia. After two bone marrow transplants, there is nothing more that can be done medically to cure Dax’s cancer. Given just a few weeks with a happy boy, the Locke family decided to celebrate every day like it was Christmas. To show our love and support for the Lockes without intruding on their last few precious weeks with Dax, friends and neighbors from Trails Edge in Washington decided to join them in celebrating Christmas early by putting up lights. People outside the neighborhood were touched by Dax’s story, and wanted to celebrate, too. We made this website so supporters near and far could show the Lockes they were thinking about them and praying for them. There are now lights literally all over the world as more people hear about Dax.

So this weekend, Mommy is going to talk Daddy into getting a small tree so we can decorate and show our support to Dax and his family. If you decide to decorate too go out to Dax's website and post a picture!

Peyton Nicole Smith

Tuesday, November 17th, 2009

It's hard not to spoil me rotten when catalogs like American Girl show up announced. Here I am picking out my favorite doll (and no, I really don't need another doll!)

Peyton Nicole Smith

Monday, November 16th, 2009

There's still a little candy left over from Halloween and I'm not afraid to ask (sign) for it! After getting my H1N1 shot today I certainly deserved it. At the last minute the pediatrician's office got the shot in (killed virus) so I didn't have to get the nasal vaccine (live virus). Mommy had also been told I would need a booster but due to the shortage I will only be getting one shot. Also due to the shortage, my parents won't be getting the shot because parents are only getting it if their children can't.

Happy 3rd Anniversary to my parents!

Peyton Nicole Smith

Sunday, November 15th, 2009

Long time no blog! It's been difficult to get around to blogging since Mommy has been out of town the last week. She got home Friday night but Daddy did an awesome job of keeping things together at home while she was in Salt Lake. On Monday I had a feeding therapy appointment with Lucille and Karen and did great. In fact, Karen can tell a big difference in the appointments when Mommy attends and when she doesn't. It's not that I am not a good girl when Mommy is around, but I eat more and am willing to try new things when Mommy isn't watching. On Friday I had an appointment with my hard of hearing teacher and was a very good girl for that one too. All week I have been sleeping in my toddler bed with absolutely no problems - I haven't even tried to get out once!

When Mommy returned Friday night she had lots of presents from my family and friends in Salt Lake. Grandma Mower made me a new purple tutu to wear and I put that on first thing. Saturday morning before dance class I didn't even make it out of my jammies before putting on my new tutu! Despite telling Mommy "no" many times, I got in my leotard, tights (thanks Noy!) and ballet slippers and off to dance class we went. I may have protested a lot but once I got there I had a great time.

Sunday morning it was time for my long awaited Christmas photo shoot with my brothers. Mommy is not an expert in the hair department so she went the easy route and straightened my hair instead if trying to curl it. The boys tried to pull each other's bows off so Mommy and Daddy had to work fast to get a few pictures. You can see a sneek peak above of the fun we all had.

Peyton Nicole Smith

Sunday, November 8th, 2009

The morning started off with me trying on my new dancing outfit. I thought it was great, in fact, I didn't want to remove it once it was on. So Mommy and I struck a deal - I could keep the ballet slippers on as long as I wanted and I wore them most of the morning. Once my parents got breakfast and ready for the day, we went off to find me a toddler bed. Although I have yet to figure out how to climb out of my crib, my parents felt I was getting old enough to get into a bed. We did a little searching and found a little bed just perfect for me. While I went down for my nap, Daddy put my bed together and modified it so there are two rails on one side to keep me from falling out. When I woke up, it was waiting for me. Mommy moved my crib mattress to my toddler bed and it was ready to go! I liked it right away and figured out quickly how to get in and out on my own.

In the afternoon, Uncle Jeff came by to visit for a few hours and we tried out the hats from his "ketchup" and "mustard" Halloween costumes. (Daddy and Uncle Jeff dressed up in the costumes for fun but I have been threatened with no more Yo Gabba Gabba if I post them on the blog!)

The big moment came this evening and it was time to try out the toddler bed for sleeping. Daddy and I read a few books together and then in the bed I went. I rolled around a little just like I have always done in my crib and then before you know it I was asleep - I didn't try to get out once. Hopefully this is not just beginner's luck since Mommy is going out of town tomorrow for the week.

Peyton Nicole Smith

Saturday, November 7th, 2009

In the hopes that I might get motivated to start using the potty - Mommy let me try on my Sesame Street big girl underewear. I had a lot of fun dancing in them until I had a little accident but even then I didn't really want to take them off. I will keep practicing though!

It was my second week of dance class and according to the rules only one parent can go so not surprisingly Mommy was volunteered to attend with me. In a week's time the class had shrunk in half - only four little girls this week but that meant there was plenty of room to move around. I had a great time and was excited to get my sticker for being such a good girl.

Daddy wasn't feeling well today so after my nap Mommy and I went to run a few errands. We made a special trip to Target to get a leotard and dancing shoes for my next dance class so hopefully it doesn't take a month to convince me to wear them!

Peyton Nicole Smith