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! Pacers 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.
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Hi friends,
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! Greetings, Friends!
We hope this letter finds you healthy and happy. As we approach the end of another year, I hope we all can find a minute to give thanks and gratitude for our blessings and for those amazing people in all our lives. This year again proved to be an incredibly busy year with so many things happening in the world and in our personal lives. It has once again left us asking ourselves, “where did the year go”? What’s more, 2019 has shaped up to be a very exciting year for our organization, which is now Rally4Reilly & Friends. So many positive things are happening Since the inception of Rally4Reilly in 2017, there have been many positive changes. The support, both spiritually and financially, has been nothing less than amazing! Family, friends, businesses, and people that don’t even know Reilly have all helped make our two, annual Charity Golf Tournaments, as well as the GoFundMe page, so successful! Everyone who has touched our cause is responsible for the success! Through the many generous donations, Reilly’s parents have been able to purchase a medical van to help properly transport Reilly to his medical appointments, therapy, outings, and, of course, the park. This van has proven to be invaluable! Reilly’s parents have also able to purchase the very expensive airfare for Reilly to fly back to Boston for his specialized Spinal Surgery. At this time, it is too early to know the level of success from the surgery.
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