Friday, April 10, 2015

Cystic Fibrosis Walk

Dayson was able to leave the hospital on Saturday March 28th. So he was in the hole for 17 days this time, the longest stay so far. His cousins were down for the weekend, so after he got out of the hospital Saturday afternoon, we stayed in a hotel so Dayson could spend time with his cousins. The next day was the Cystic Fibrosis Walk at the University of Arizona. Chet and Dayson were asked by the Cystic Fibrosis Foundation to say a few words at the walk. Sunday morning I had to wake Dayson up so he could get ready for the walk and he just started crying because he still didn't feel good. He finally got dressed and we made it to the walk, but when we got there and he saw how many people were there, he started crying again because he did not want to go on stage in front of all of those people. Dayson has always been sensitive to loud noises, shy around people he doesn't know and doesn't like trying new things. When he was little he hated fireworks and any other loud noises. The first time he went to the UofA football game he just cried and plugged his ears when the crowd erupted in cheers. Anyways, at the walk Chet and I were trying to get him to just go on stage with Chet, because at that point we knew he wouldn't say anything, but I really wanted him to at least go on stage. He was pretty set that he was not going on stage and it was almost time for Chet to go on and so Chet went and stood at the base of the stairs. Then a woman came up to Dayson with her dog and told Dayson that her dog Boomer was really nervous to go on stage and would he go on stage with her dog? It completely worked and Dayson told her he would go on stage with Boomer, so just as Chet was beginning to talk, Dayson walked on stage to join him. 

Chet did an amazing job talking about how Cystic Fibrosis affects our family and Dayson and he said his goal is not to just "add more tomorrow's" but "add better tomorrow's" by helping the Cystic Fibrosis Foundation find a cure and find a way to make Dayson's daily life easier and better. After Chet spoke they introduced the woman with the dog, Representative Martha McSally. She is an amazing woman and was so sweet to help us get Dayson on stage. 

After Represenative McSally spoke, they had Dr. Cori Daines speak. She is one of Daysons doctors and she is one of my angels on earth. We are so grateful for her and the time she takes explaining things to us. We are grateful for his other doctors too, we truly are so blessed with amazing doctors and love them all. 

We had some amazing friends and family at the walk to support us and it was so nice to be out there with everyone, as we were all walking for the same goal of finding a cure. 

The next day he went to school for a few hours and then I picked him up early and took him back to the hospital for a follow up chest X-ray. He fell asleep in the car on the way to the hospital. The next few days he had a nap every day after school because he was still recovering and trying to get back into his normal routine. Tuesday the 31st was his 9th birthday and the best present was not being in the hospital for his birthday. 

He came home early from school and had a nap but then we went to Sierra Vista and watched the movie Home and ate dinner at his favorite restaurant Chili's. He also got a new bike for his birthday that he and Chet had picked out together while he was in the hospital. 

Dayson has gotten progressively better every day since we left the hospital. He has gotten his appetite back and his energy level is back to normal. He still has a pretty bad cough, but that is expected with the amount of fluid that was in his lungs. He goes back to clinic on Monday the 20th for a follow up and to test his lung function. I can not express enough thanks to our family and friends who continue to support us through this lifetime journey with this battle against cystic fibrosis. I'm so grateful for my Savior and all of the many, many times He has comforted me though the heartache of watching Dayson suffer. Dayson is an incredibly strong kid who has a lot to deal with at such a young age and yet he is one of the sweetest kids you'll ever meet. I'm so grateful for him and his example. I'm grateful for his older sister who is so patient, understanding and helpful. I'm grateful for his 2 little sisters that bring so much joy and laughter into our home. And of course I couldn't survive without my loving husband who is the rock of our family and keeps everything together. I love you Chet Judd! Thank you for all that you do for our family and thank you for being so patient with me and thank you for helping me get back up when I break down and get stuck in the fear and can't see the big picture - you always see the big picture and I'm so grateful for that!