Monday, February 27, 2012

Monday, February 27th, 2012

A note from Mommy:

If you have followed the blog you have seen how much we appreciate Hope Kids for all they do to bring joy into the lives of kids like Peyton.  For the last two years we had a team for the Wasatch Adventure and raised money for the organization.  This year we will take it a step further as Peyton has been asked to be one of the featured Hope Kids for their annual Faces of Hope dinner & auction.  Peyton will be there in all of her glory - which could be good or bad depending on her mood!  Please consider purchasing a ticket and helping this organization that continues to do so much for Peyton and other children like her.  To purchase tickets:

Monday, February 27th, 2012

Thursday, March 1st, 2012 - just a few days away.  My joint release was scheduled for Monday, April 16th but Dr Morales had a cancellation and called to see if we wanted to move our surgery up.  Mommy jumped right on that since 1. I am healthy now and there are no guarantees I will be in April and 2. Since I have lots of surgeries in my future might as well get another one over and done with.  The plan is that I will stay overnight and go home at some point on Friday. 

Wish me luck!

Peyton Nicole Smith

Sunday, February 26th, 2012

Falling asleep with Henry Lee .... this gives Mommy hope someday we will really truly be friends.

Peyton Nicole Smith

Saturday, February 25th, 2012

Mommy surprised me by meeting Uncle Lonnie, Aunt Kristin and Jackson at Airborne Sports in Draper this morning.  We got there right as they opened at 10 am and before they got too busy.  Jackson had been there a few weeks prior for a birthday party so he showed me around.  It's hard to describe a place with trampolines and pits of foam squares so you'll just have to check it out yourself someday.  But Jackson and I had tons of fun and I think Uncle Lonnie wasn't far behind us.  He had a great time throwing both of us in the pit and pulling in Mommy and Aunt Kristin too!  (There was even a little lovin going on in the foam pit for Uncle Lonnie and Aunt Kristin - sweet!)

Peyton Nicole Smith

Wednesday, February 22nd, 2012

I have been complaining of teeth pain lately in a few different spots.  My parents figured it had to be new cavities since as you know my mouth is the perfect storm for dental decay.  After taking a look today though, the dentist didn't see any obvious signs of anything amiss so he sent me off for an xray.  As you can probably tell from the picture above, my mouth is a little unorganized!  Apparently, my six year old molars are coming in but because my teeth are not where they are supposed to be they are pushing up under some existing molars.  The hope is they will work their way around the existing teeth but looking at this photo regardless of the outcome for these particular teeth I have some serious dental work in my future!

Peyton Nicole Smith

Monday, February 20th, 2012

This my friends is the Red Germ!  Finally after months of my family and friends wondering what the heck this guy looks like while at Grandma's today the commercial came on.  Mommy started screaming "it's the red germ!" as if he was a rock star!  Finally my parents don't think I am crazy!

Peyton Nicole Smith

Tuesday, February 14th, 2012

For Valentine's Day I was super spoiled as usual.  At Grandma and Papa Smith's house I had a gigantic balloon and a basket filled with fun toys.  Grandma and Grandpa Mower know how much I like to dance so they found a doll I could "attach" to my shoes and dance with.  Dancing with the Stars is definately in my future!

Grandma Glenda helped me make my parents a Valentine's card.  Isn't it cute?
Peyton Nicole Smith

Saturday, February 11th, 2012

I had such a great time last year at Hollywood Connection that when I heard we got to go again I could hardly wait!  Despite being at the tail end of my cold, I had plenty of energy to enjoy all my favorites - golfing, the carousel, the amusement rides and the rollercoaster.  All was going great until the "dragon" showed up.  I am not a fan of any one dressed up as a character (remember Hope Kids Wasatch Adventure?) and today was no exception.  I wanted to know where he was every second and even while I was on the rollercoaster, I was looking for him.  When I lost him in the crowd I was disappointed/relieved so on the way home, Mommy let me call him on her cell phone to say goodbye.  For the rest of the day I was obsessed with all things dragon-related on YouTube.

Peyton Nicole Smith

Friday, February 3, 2012

Wednesday, Feburary 1st, 2012

Guess who showed up via email, blog and Facebook today?  I kicked off the Patient Stories today leading up to the World RARE Disease Day!


Peyton isn’t that much different than any other four year old if you ask her. She loves to color and dance and she is a ‘Yo Gabba Gabba’ fanatic. Luckily, she is still blissfully unaware of the stares directed her way when we go to the grocery store or the playground. Peyton was born with Nager Syndrome, a very rare condition that results in craniofacial and upper extremity anomalies. As a result of her lower jaw not developing fully, she underwent a tracheostomy at 3 days old to breathe and a gastrostomy at 3 weeks old to eat. She has severe bilateral hearing loss and has been wearing hearing aids since she was a few months old. She has had two jaw distractions and three hand surgeries. Her life has been filled with xrays, CT scans, doctor appointments, hospitalizations and therapy sessions.

Despite the rarity of Nager Syndrome, with the internet we were able to learn much more in the first few days of her life than what the hospital could provide from their outdated genetics books. We have been able to reach out to other families whose children have Nager Syndrome and have even met a few in person. We are blessed to have strong support from our family, but through the Nager and Miller Foundation we have also felt part of another “family” who understands the unique challenges and joys that we experience with a child like Peyton. Through our blog we have had many families reach out to us who have children that are newly diagnosed. We even had a family contact us before their child was born, and seeing Peyton’s smiling face brought them hope in a time of great stress.

The Global Genes/RARE Project, is just one more “family” that we can feel a part of. In December, I received a bracelet as part of the 7000 Bracelets for Hope project. Although I have never met the jewelry designer, Eileen has made me feel such hope that there are others just like her in the world who will make Peyton’s path easier.

Tracy Smith