[1]When we last wrote about our little angel, Jayson, he was in his first year of many medical conditions that he would be encountering. Although it was an extremely stressful time, Jayson’s strength throughout was our stronghold.
In March 2010, Jayson had a successful decannulation at Phoenix Children’s Hospital. It was both a successful day for him, as well as for his favorite nurse, Sara Allen. Sara completed her first ever “start to finish” experience with Jayson that actually brought tears to her eyes, and ours! Jayson had been through it all with the great nurses, doctors, and staff at PCH (https://phoenixchildrens.org/ [2]), but his favorite nurse was definitely Sara, who had such an attachment to him for the several months he had spent with her. It was a defining moment for the whole circle of important people in his life last March.
Jayson’s jaw was also an area of concern. Children born with Pierre Robin Sequence [3], like he was, sometimes may require additional surgeries to bring their jaw forward. Jayson was very lucky that his jaw grew naturally, and is forming just as it should. This ultimately means, hopefully, no more surgeries of that type in his future.
Jayson’s speech and motor skills have also vastly improved with help of specific therapies that he’s enjoyed just as much as they enjoy him. His occupational therapist, Jenny, works so well with him every week, that many of his accomplishments (like his recognition of letters, shapes, and sounds) have grown so much. His speech therapist, Miss Mary from KRMC (www.azkrmc.com/ [4]), has worked so hard to build his speech and vocabulary. She has seen massive results since he began with her at the top of the year. Both therapists have worked hand in hand with him, and he’s learned so much from them that it’s really like a whole new Jayson!
Finally, in June of 2010, Jayson’s G-Tube (feeding tube) was removed because he eats and drinks well enough on his own now that he has no more use for it. Well let me be honest, he loves to eat and drink! He’s brought his weight up to average (for his age and condition), and has established a routine that helps him continue to maintain his weight.
We’ll continue to travel to Phoenix monthly for his appointments for various kinds of potential surgeries, and continue to enjoy staying with Ronald McDonald House Charities (rmhc.org/ [5]) who have taken us in when we had nowhere else to go. They keep providing that enjoyable atmosphere that Jayson now enjoys with us. We continue to revisit his former residence at Hacienda Skilled Nursing Facility (www.haciendainc.org/ [6]) every time we get a chance to go. Jan, Melissa, Brian, Jibri (Jayson’s best buddy) and many others (including the Wives of Arizona Cardinal players such as Brenda Warner) have had such an impact on Jayson’s life. He enjoys returning each time to see them and show off all the new tricks he’s learned (not to mention playing Jan’s singing lobster over and over again!). As Jayson’s appetite has expanded, we’ve also became monthly regulars at the Whataburger (737 E McDowell Rd.-Phoenix) where he enjoys seeing his friends who work there and enjoying the great food. We’ve also met some great people through Kiwanis, especially Ron Smith, of the Dreamcatchers chapter. We’re beginning to become involved with the Kingman chapter as we speak. All of these have been instrumental in providing huge amounts of support and resources.
Overall, our experiences have become our story, and Jayson’s condition becomes more and more a thing of the past. His progress has been so incredible. Many of his doctors are astounded by how well he’s accomplishing so much in such a little time. We thank God most of all for His love and support of us and Jayson these past 2 years. Even though, at times, we’ve been confused with everything Jayson’s gone through and how to handle it. We were granted great teachers, great supporters, and generous, loving people to help us through this journey everyday. I remember a time when someone asked why travel so much (considering the distance between Kingman and Phoenix)? Why not just simply move to Phoenix? Yet we stood our ground because we enjoy living in Kingman and we enjoy all the friends we’ve met here that we weren’t ready to give up on by moving. We’ve walked this walk, caring for Jayson (now 2 years old), all by ourselves after he came home from Hacienda in ’09. We worked hard to control the situation the best we could. Eventually, resources became available in Kingman and everything would begin to fall into place. This is making Jayson’s life so much easier to live, and ours so much easier to help make that happen.
All thanks to “Our Little Angel!”
Inspirational Stories
- Never Give Up! Mike’s Success Story [8]
- Alex’s Success Story [9]
- Franky DiStefano a Vocation Success Story [10]
- Having a Voice! [11]
- Autistic Teen Finds Inner Voice [12]
- Patricia Moody’s PATH to Success [13]
- Katie Meade is Fearless, Inspiring and Setting Records [14]
- A Story of Inspiration: How Vernon Changed My Perception of Disability [15]
This post originally appeared on our November/December 2010 Magazine [16]