Sunday, April 8th, 2012

Santa Claus may come down the chimney but apparently the Easter Bunny couldn't make it through the doggy door so when I woke up this morning I looked out on the deck and saw he had left me a sand box and my easter egg pail!  After two easter egg hunts yesterday, I had two more on the docket today.  The first was at Grandma and Papa Smith's house in the afternoon. The second was at Karen's house.  So after a fun filled Easter weekend I am now an easter egg hunt expert.  (So next year at the Cottonwood Easter Egg Hunt I am ready for a rematch!)

Peyton Nicole Smith

Saturday, April 7th, 2012

Easter wouldn't be Easter without an easter egg hunt - okay let's try four easter egg hunts!  Saturday morning Mommy, Aunt Kristin, Jackson and I braved freezing temps to join hundreds of other kids for the annual Cottonwood Easter Egg Hunt.  A big field was divided into different age groups and we were primed for the 3-5 age group.  As the announcer on the loud speaker kept saying - only the 0-2 area were parents allowed on the field.  When it was time to go, the fire engine siren went off.  Jackson took off right into the fray but I had forgotten my bag in the excitement so I lost precious moments coming back to the sidelines for my bag.  By that point I had lost Jackson in the crowd and spent the rest of the time looking for him.  But the real surprise was that Mommy, Aunt Kristin and very few other honest souls had stayed on the sidelines and let their kids gather eggs on their own - almost every single parent went onto the field with them. 

When Jackson and I came off the sidelines it was pretty clear that he had scored big time while I had only ended up with one egg.  And in a twist or irony for a tube fed kid, inside my egg was a gift certificate for an all you can eat meal at Chuck-A-Rama!  As Jackson spent a few minutes gloating about his haul, we went to go see the firefighters and I told them excitedly that I planned on being a firefighter some day.

Peyton Nicole Smith

Monday, March 26th, 2012

Easter is one of my favorite holidays.  It isn't so much about the candy or the egg hunts but mostly beacuse I love decorating Easter eggs.  Grandma Marilyn let Jackson and I come over for the messy project and we had so much fun.  We only spilled a few cups of colored water!

Peyton Nicole Smith

Thursday, March 22nd, 2012

 On Thursday nights, my parents use some of their respite hours to get in a "date night'.  On this night, Uncle Jeff met them while they were running some errands.  They were at the local party store looking for some items for the upcoming Hope Kids fundraiser.  With a whole selection of hats, it was only a matter of time before Daddy and Uncle Jeff decided to pose for some pictures.  With all of his talk that Daddy is his "life partner" it shouldn't be surprising that they chose these hats - or that Uncle Jeff is the bride!

Peyton Nicole Smith

Saturday, March 17th, 2012

It's been a year since Mommy was put in touch with another family in Utah who has a child with Nager Syndrome.  They live about 30 minutes away and we have had good intentions to get together but we were finally able to meet up today at the Discovery Children's Museum.  Daxton is the youngest in a large family and except for those that were working, all of his siblings joined him to meet Mommy and I.  He was a little shy with me but I wasn't shy at all and I was in heaven being carried around by his older sisters.  Mommy was a little teary eyed seeing how much I enjoyed being a "little" sister for a few hours.  Mommy got a great chance to talk with his parents about their medical journey with Daxton.  Since Daxton and I share the same surgeon, they had the opportunity to discuss the similarities in our anatomy and surgical outcomes.  Although Daxton had just turned 5 a few days earlier he was much taller than me - answering one of the questions Mommy has had all along about my short stature.  Towards the end of our visit, I played "Duck, duck, goose" with Daxton and all of his siblings and we ended up chasing each other around the museum.  I was so sad to leave that I cried most of the way home.  Such a wonderful family and a day Mommy and I will not soon forget.

Peyton Nicole Smith

Wednesday, March 14th, 2012

When I woke up this morning at Grandma Glenda's, I headed to the potty first thing.  After being fed slowly all night long talk about needing to pee!  I had been asleep on the couch after Daddy had dropped me off this morning and it wasn't until I was on the potty that Grandma noticed that I was wearing the cap on my trach. Since she knew she hadn't put it on, she asked me if I had put it on.  When I shook my head "no", it occurred to Grandma that something pretty important had happened.  After checking with my parents it became clear that on accident I had fallen asleep overnight with my cap on!  Now this is a little more scary because since Christmas time I have been trading off sleeping with one of my parents.  And since I haven't been in my bedroom with my machines that means I wasn't hooked up to a pulse oximeter while sleeping with my cap.  So on accident my parents tested a theory that they have had for quite some time - I can tolerate being capped while sleeping which is a pretty good sign that I could be decannulated at some point in the future.  Even with this unexpected good news it doesn't mean I am going to be a mouth breather any time soon since I still have many surgeries in my future and my last laryngoscopy still showed a very small airway.  But it is still a tiny, dim light at the end of the tunnel!

Peyton Nicole Smith

Sunday, March 11th, 2012

With the Lorax on Friday night and the zoo yesterday you would think I was ready for a quiet night at home but the weekend was capped off by getting to see Disney on Ice with Hope Kids tonight!  Jackson went last night with his parents and shared some pictures so I was so excited to go. 

As soon as the lights went down I kept whacking Mommy and pointing as each new character skated onto the rink.  I was so happy that I followed right along clapping and dancing.  At intermission, we found we were sitting right next to Mason and his parents and older brother!  My parents met Mason's parents during my jaw distraction a year ago as they were waiting for him to come out of heart surgery.  Although the parents had seen pictures of each other's children this was the first time to see the kids in person.  Mason is doing great and won't need more surgery for a few years hopefully.  Although Mason and I have very different surgeries, we have much in common when it comes to the medical challenges we face now and in our future.  And because of Hope Kids both Mason and I as well as our parents have the opportunity to have some fun knowing that all these families share a common bond and similar experiences.  Thanks Hope Kids!

Peyton Nicole Smith