Reilly remains in good spirts. Most days he’s his normal happy, spunky, feisty self. But let’s be real for a second and point out that like other six year olds, he definitely has melodrama moments...lol.
Reilly wrapped up kindergarten with flying colors and excelled in reading and math. Although virtual learning was a God send this year, we’ve discovered that given his condition and attention span, the best place for him to excel will be back in the classroom. We met with the school and picked a classroom that will suite Reilly’s needs. His IEP seemed promising and we are looking forward to working with the support team. In the meantime, we are still trying to navigate through many other obstacles before he can go back at the end of August.
Mark Daggett + the great Randy Jones
Tony “Tone” Thogmartin Photo by Jam Press
Reilly has a few favorite things he really enjoys doing. He loves using his mouth stick / apple pen with his videos. He is getting the process down and it makes him happy. He also loves watching YouTube videos and playing games with Mom & Dad.
Reilly is attending school via Zoom and is currently on spring break. He loves math and reading. He excels at math as he is very smart.
Some of the current challenges Reilly is experiencing are that his bed sore has recently flared up and makes it very difficult getting him to actually attend school in person and it is also difficult when he is at school with his portable ventilator and other equipment because it only lasts for 4 to 6 hours.
Thanks for joining us on a special journey. This is Reilly’s journey with his special life and his forever home. We will be sharing the progress of his new home, which, by the way, will be 100% ADA accessible and have all the necessary equipment and goodies necessary to help him navigate and enjoy his new home.
Reilly’s family purchased a lot in Eucalyptus Hills in East County, which will become Reilly’s forever home. Kyle, Reilly’s Dad, has spent considerable time clearing the lot of several Eucalyptus trees and brush. They have completed the site development, which includes grading for the house pad, block walls, and slope landscape. They are awaiting final approval for changes to the septic tank location.
We are proud of our partnership and friendship with the Randy Jones Foundation and their charity golf tournament, the Randy Jones Invitational (RJI), which began a few years ago when RJI invited our top three finishing foursomes to play in their tournament. We believe that partnerships with other non profit organizations helps create validity and strengthens the organizations. For the last few years our organizations have teamed up to help keep each other’s event running smoothly. With Curt Gandy, the Director of the Randy Jones Foundation at the helm and a team of amazing volunteers, the event is always a success.
Most recently, we were able to help with the 8th Annual Randy Jones Invitational last month. The RJI attracts over 1400 golfers each year and is quite a production! The tournament was held over 10 days with a two-day final coming this weekend. Proceeds of this charity tournament benefit the Randy Jones Foundation, which helps military families throughout San Diego in many ways including taking kids and families to events like fishing trips and ballpark tours as well as providing athletic scholarships for exceptional student athletes.
Reilly is in his new power chair all day. He can operate it himself using an air pressure switch and is loving the freedom!
Unfortunately, Reilly isn't tolerating his pacers very well, so his doctors are in search of some type of battery/power pack that will power his vent and humidifier when they are out. This will play a important part if or when he returns to school.
We're so excited to get the house going, but so far it has been delays, delays and more delays. The tentative start date for grading is looking like early fall. Reilly's mom, Tammy, is continuing to collect Australian native plants to decorate when the home is finished. Reilly, Mom, and Dad are all excited to get going.
For everyone following Reilly’s journey, we have an update to share!
Reilly’s overall health and demeanor have been good. He’s happy, goofy, sarcastic, and 4 (almost 5) going on 14!
We had a more in depth scoping done back in January to see if there were any complications around his trach site or his esophagus which would cause him to desat when being capped. Right now, he “tolerates” his pacers when being on the speak valve although he doesn’t prefer it to his normal vent because it feels funny and because his speech to be different. Scoping was unremarkable…no granulomas, no scar tissue, & no major esophageal side wall collapse. What does this mean? It basically means that he doesn’t tolerate change. Big shocker!!! We are back to minuet baby steps. We have decided to go back and have an inline speak valve ordered so that he can get use to the sensation of it while being on his regular vent. Once he has shown that he’s comfortable with it, we will move to the next phase of going back to his pressure support mode used in tandem with his pacers. Once he seems comfortable with this step, we will have a custom 3D printed speak valve added that can be turned to all the way open or dialed down to being completely closed like a cap. This whole process may take a LONG time given Reilly’s track record with changes, but the idea is that with these changes he will hardly notice.
The entire Rally4Reilly & Friends team hopes and prays that you are all doing well and staying healthy. In the midst of COVID-19, this year has certainly taken us all to a place we never expected. We hope everyone is doing their part in helping to flatten the curve by practicing social distancing and sheltering in place. Unfortunately, so many people are not taking this seriously and seem to think that the pandemic won’t affect them. This couldn’t be further from the truth – we’re all in this together!
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