Saturday, July 10th, 2010

Grandma Mower called Mommy this morning to let her know that Sandy was having their annual horse parade and thought I might like to go. Since Daddy was waiting for the furniture to be delivered, Mommy and I headed down to the Sandy City Center to watch the horses. I was super excited and insisted that I get to ride them although Mommy kept trying to explain today we only got to watch them.

We found a spot in the shade and with a great breeze it was perfect weather for watching the horses ride by. We stood and put our hands over our hearts as the American flag was carried by and the Marines walked their horses by. There were horses in all shapes and sizes - even little minature ponies pulling little carts. Mommy and I waved at everyone that went by and plan to make this a yearly event!

Peyton Nicole Smith

Friday, July 9th, 2010

I had a great time Friday night at my Grandma and Grandpa Mower's house. My cousins Traiton and Jackson and my Uncle Jason and Aunt Kristin were there as well. Traiton was very nice and brought his t-ball stand and I was content to play with it the entire time. Unfortunately, Mommy required that I share it with Jackson and Traiton too! When it came time to leave, I threw a Category 5 tantrum that lasted most of the way home. Right before bedtime, Uncle Jeff came by with his girlfriend, Viv and I took a few snapshots of the group that he posted on Mommy's Facebook account. What other 2 year old do you know that is asked to be the photographer at events?

Peyton Nicole Smith

Thursday, July 8th, 2010

I am always very talkative during bath time!

Peyton Nicole Smith

Wednesday, July 7th, 2010

After a few quiet months without doctor's appointments, July is going to be busy and today started it off with the dysphagia clinic. In Sacramento, they didn't have a dysphagia clinic but it works kind of like the craniofacial clinic and brings multiple specialties together for one long appointment. We got checked in and into a room and then it was time for a height and weight. Fully clothed I was at 25 lbs 8 ozs - so my parents decision to pump up my volume in the last six weeks worked like a charm - I made up the weight I had lost a few months back. In fact, when the RN went over the growth chart with my parents I was in the 90th percentile for height to weight! I am still small for age compared to other kids but I am doing great when compared to my previous growth charts.

In the next hour, the room was filled with lots of folks - dietician, GI, RN and speech pathologist. Mommy didn't know that GI was part of the clinic so she discovered my GI appointment two days later was able to be cancelled - yeah! Mommy had several items on the agenda for the appointment - changing out my formula, addressing the issue of my g tube getting "sucked in" and establishing care with feeding, speech and GI. First up was the dietician and GI. They both agreed that I was ready to move to an older soy formula. Since Mommy already had some at home for a trial, they encouraged Mommy to start me on it and then call them if it went well so they could get a prescription for the supply company to provide it. Because my growth was on an upward trend they didn't make any changes to volume. They had asked my parents not to feed me for several hours in anticipation of doing a feeding trial so like clockwork, my g tube button sucked in while the GI was in the room. Although my parents don't like seeing me in pain, it was the first time a doctor has witnessed what my parents have been trying to describe. The GI was floored - she had never seen anything like it (just like the last GI). My parents pointed out that the surgeon who put in my g tube in Sacramento puts it in a different location then what is standard in the field. My parents have wondered if that may be contributing to the problem and the GI was curious as well. Since nobody is anxious to have me endure another surgery to move it they decided to change my button size and see if that helps. They are hoping that with a longer stem maybe it will help. So my parents got a prescription for a different size and they will give it a shot and see what happens. If that doesn't help the next step will be to put some barium down the tube and figure out exactly where the tube is located in my stomach.

The speech pathologist came in and helped my parents figure out a good resource for speech and feeding closer to home. She also asked that the new therapist complete a swallow study since it has been almost two years since the last one. To assist in my own self feeding, the speech pathologist also gave my parents a resouce for occupational therapy as well. Helene had me eat and drink a little in front of her and also talk a little by covering my trach. She was pretty impressed with me and told my parents that of the five current Nager children working with the craniofacial panel at Primary Children's, she thinks I am the highest functioning. Mommy knew of only one other child with Nager that just moved to the state in the last few months - so she was shocked to hear there were three others in addition. Helene explained that because Primary Children's is one of the only children's multispeciality hospitals in the region, it is possible the children don't live in Utah and that they end up seeing the children with the most severe cases.

I will go back to the dysphagia clinic every 4 months for a check up but continue to get speech, feeding and occupational therapy in between. After a long day with no nap I was definately ready to get home.

Peyton Nicole Smith

Tuesday, July 6th, 2010

A note from Mommy:

Last week when Carrie from the State came to sign Peyton up for the waiver program, I asked her a question. About six weeks ago I had called asking where Peyton was on the list and Carrie indicated that new children with vents had pushed Peyton down the list. There were now three children ahead of Peyton and only two slots were scheduled to open up in the next few months. That meant Peyton would be at the top of the waiting list again but with no open slots on the horizon. So now I wondered, how did Peyton end up coming off the list? I wasn't quite prepared for the answer - a child had passed away providing the open slot. Of course I know that with the children who qualify for the program they have serious medical issues so death is always a possibility but it is something I never imagined benefitting from. After having nursing for several years and then going without any nursing for several months, I already knew I would appreciate it much more this time around. Now in the back of my mind, though, I will also be wondering about the child who died much too young and hope never to take for granted the nursing time we receive due to their untimely passing.

Monday, July 5th, 2010

I got to spend more time with my parents today because it was a work holiday and they had the day off. We started off the morning by going shopping for furniture. Now let me tell you, it is no fun at all to be at a big store with furniture and lots of knick knacks and not be able to touch a thing! Needless to say, after a few hours I was getting antsy and my parents were getting anxious! They finally wrapped up the deal and some new furniture will soon be delivered!

In anticipation of the furniture showing up the toys that had ended up in the family room/dining area needed to move. So my parents moved all my toys downstairs to the basement and now I have my very own playroom! I love having all my toys in one place! I spent most of my time there in the evening. I didn't want to leave to go to bed but my parents promised I could spend more time in the room tomorrow.

Peyton Nicole Smith

Sunday, July 4th, 2010

I spent a few hours at Grandma and Grandpa Mower's today playing with my cousins - Jackson and Traiton. While Jackson played with the bubble blower and picked up pine cones - I worked on my batting and drop kicks. Cousin Traiton had lots of energy today and didn't stay on one taks for very long!

Daddy was busy at home. He replaced the outdoor lights, painted the mailbox, mounted a new mailbox and put on new house numbers. They were small changes but are helping to make a big difference on the house. Good job Daddy!

After dinner, my parents took me and my bike to a local park and it was virtually deserted so I had a lot of room to run around and go down the slide as much as I wanted. To the sound of fireworks in the neighborhood I eventually fell asleep.

Peyton Nicole Smith