Our Little Angel

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, Jaysonโs strength throughout was our stronghold.
In March 2010, Jayson had a successful decannulation at Phoenix Childrenโs Hospital. It was both a successful day for him, as well as for his favorite nurse, Sara Allen. Sara completed her first ever โstart to finishโ 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/), 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.
Jaysonโs jaw was also an area of concern. Children born with Pierre Robin Sequence, 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.
Jaysonโs speech and motor skills have also vastly improved with help of specific therapies that heโs 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/), 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 heโs learned so much from them that itโs really like a whole new Jayson!
Finally, in June of 2010, Jaysonโs 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! Heโs brought his weight up to average (for his age and condition), and has established a routine that helps him continue to maintain his weight.
Weโll 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/) 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/) every time we get a chance to go. Jan, Melissa, Brian, Jibri (Jaysonโs best buddy) and many others (including the Wives of Arizona Cardinal players such as Brenda Warner) have had such an impact on Jaysonโs life. He enjoys returning each time to see them and show off all the new tricks heโs learned (not to mention playing Janโs singing lobster over and over again!). As Jaysonโs appetite has expanded, weโve 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. Weโve also met some great people through Kiwanis, especially Ron Smith, of the Dreamcatchers chapter. Weโre 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 Jaysonโs 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 heโs 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, weโve been confused with everything Jaysonโs 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 weโve met here that we werenโt ready to give up on by moving. Weโve walked this walk, caring for Jayson (now 2 years old), all by ourselves after he came home from Hacienda in โ09. 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 Jaysonโs life so much easier to live, and ours so much easier to help make that happen.
All thanks to โOur Little Angel!โ
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This post originally appeared on our November/December 2010 Magazine