We're so excited that the next phases of Reilly's forever home have taken shape after so many delays due to the pandemic. The house is now framed and then onto the facia!
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Even with Reilly’s pressure sore on his lower back finally healed up, there is still a lot to do to prep him and his equipment to get him ready to go back to school in person.
Until recently, Reilly has been lying exclusively on his side and rotated every few hours, day and night, to avoid any new pressure sores. As such, we need to work him up to sitting upright slowly, not just so we don’t reinjure the healed pressure sore (which will always be susceptible to reinjury in the future), but also to build up his strength and stamina. 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. 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. |
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April 2024
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