In May of 2022, Reilly’s forever home was completed and we are really loving the new space. The holidays were so much fun for entertaining and Reilly was ecstatic to have visitors and show off his favorite spaces. The layout and organization has made caring for Reilly so much easier. Reilly’s favorite room is his dinosaur inspired bedroom where all his plushies and toys surround him. His favorite pastime activity is playing video games, especially with his best gaming partner Kyle. One of our goals for this year is to program customized user profiles into the quadstick so that Kyle can teach Reilly how to play Minecraft independently. I think once we figure out how to program all the commands, we may never get Reilly out of the office.
School has been going well and Reilly has made some great friends. The school and staff have been wonderful to work with and they are very supportive with his educational needs. He even led the entire school in the pledge of allegiance one morning with the principle and of coursed ROCK IT!!! Since Reilly doesn’t go outside during the breaks, his teacher will choose four classmates to have lunch with Reilly so that he can hang out and socialize. The class has taken to calling this rotating group Lunch Bunch. During these breaks, he’s been connecting and making some great friendships with the other kids doing group activities, playing board games, or sometimes they just like to surround him and watch him play games on his iPad. Some of the kids have even come over to the house for a play date. It’s really been awesome to watch his engagement with other kids, especially since so much of his life has been surrounded by adults.
At this age, Reilly loves having us hang out with him, but there may be a time in his future where some more independence is really desired. So whether it’s an voice controlled system, the quadstick, APPLE’s assistive technologies, advanced eye glasses or eye gaze systems; we are always on a mission to find new technologies that may be a benefit for his long term independence. With technologies advancing, we were even able to find a Christmas tree that allowed Reilly to share in the holiday fun through an app by programing and adjusting the lights. He was so excited that he created 10 different lighting designs for the tree. His favorite was to tease his mom which we called “Seizure Mode” where the lights were bright with a strobe effect…LOL you probably get the picture. The kid has an amazing sense of humor.
One of the biggest hurdles for Reilly is that he doesn’t tolerate long periods of time on his portable vent since it doesn’t provide the same level of humidification as his stationary ventilator. He can last about 20-30 minutes before he starts complaining of discomfort. He describes it as a "dragon breathing fire down his throat" which does not sound pleasant. So, since 2019, outings have been limited to doctors’ appointments and short visits to different family members houses. One of Reilly’s New Year Resolutions is to spend more time working on his pacing so that we can eventually get him off his ventilator. He says the first place he wants to visit is the Legoland Japan Hotel. That’s a very lofty goal that maybe someday we can achieve, but for now we may want to start off with our own local Legoland. Getting him on the pacers and being able to explore will really open up a lot more family activities for us.
Reilly had a vesicostomy summer of 2022 which we refer to as his "Pee Tube" to drain his bladder. There have been some adjustments getting used to the new care routine, but overall, it’s been a huge benefit as he can now stay at school for a full day. The down side is insurance and adding new DME’s. We have not had any Pee Tube supplies since the operation and have to contact his Urologist when we need replacement supplies. Hopefully this will get figured out soon. Speaking of DME’s, we are still waiting on his roll-in bath chair since he’s outgrown his bath lounger, but we’ve been told that will be coming any day now. Crossing our fingers, since the bath lounger has been leaving red marks on his back unless we add extra padding for him to lay on.
Our night time nurse relocated back to the east coast and the nursing agency is having a hard time filling his night time shift since we live in east county and he’s a Medi-Cal case. Please keep us in mind if you know anyone that works in home healthcare that might be interested in providing overnight shifts for Reilly. His overnight routine is fairly simple, but when we work full time and care for him 7 days a week without breaks, it becomes exhausting.
Over the summer, Reilly adjusted exceptionally well to his new forever home. He was particularly happy with his new dinosaur themed bedroom, his new computer and quadstick that we are working to program and teach him, as well as the size and layout of the house as it allows for him and his wheelchair to go wherever he wants. He is always excited to tell friends and family about his new house, how he has all of his toys in his bedroom and how much he loves being there.
Given how quickly Reilly is growing, it quickly became apparent that some adjustments to his trunk support vest and wheelchair needed to be made as soon as possible; near the middle of summer vacation, a small and thankfully very minor pressure spot appeared one evening on the healed scar tissue from his previously healed deep tissue pressure sore. He was offloaded and rotated from side to side for about a month which thankfully was enough time to allow the spot to fully heal as well as get him back up into his wheelchair, make the needed adjustments, and build up his tolerance so he could resume school on the first day with the rest of his classmates.
Reilly started his first day of second grade like a pro. He told his parents and new teacher he was a little bit nervous, but after getting into the swing of things he had a great first day and continues to do amazingly well. He is happy to see friends from his class last year as well as make new friends, all of whom are very interested and curious both about his medical equipment as well as how well he manages to engage and play on his iPad with nothing but his mouth. Due to the vesicostomy procedure earlier this year, Reilly no longer is limited by a diaper and is able to attend a full six hour school day.
On top of everything else going on, Reilly’s parents have also started with routinely activating the pacers connected to Reilly’s diaphragm during the evening. He isn’t off of the ventilator yet - that will still take some significant time and effort. However, when the pacers are activated, Reilly’s vent is running a special program called “pressure support mode”. Instead of the ventilator doing all of the work and pushing the air into his lungs with 100% of the pressure needed, it is acting as an assistive device that only HELPS his lungs get the air needed each time he breathes. According to the settings, the ventilator is only doing about 20% of the work whereas Reilly’s diaphragm is doing the other 80%. He currently tolerates up to 30 minute “sprints” on pressure support mode with the support and encouragement of his parents.
This next step toward getting Reilly breathing without a ventilator will be touch and go and unfortunately cannot be rushed. The nerves that now connect to Reilly’s diaphragm after his nerve splicing surgery in 2018 function slightly differently than yours or mine. Long story short, Reilly’s nerves also act as sensory nerves so when the pacers shock the nerve to contract his diaphragm, can can FEEL it. While it’s not a major electrical shock, it is definitely something he will have to get used to. Furthermore, the sensation of breathing with his diaphragm will undeniably be different than when the ventilator is doing all the work. His parents tend to think it might be similar if one of us was suddenly ventilator dependent and how many things we would have to adjust to. This whole process is likely the same for Reilly, just in reverse.
All that said, Reilly remains amazingly resilient and continues to surprise and impress us with just how well he adapts to everything thrown at him. While there are still many different projects in motion, being in their new forever home has brought the family a much needed relief in terms of Reilly’s medical needs as well as the personal enjoyment of being in a house that they (mostly Tammy) designed themselves. This year has been incredibly busy, but also amazingly fulfilling to see some of their largest projects come to fruition. They are hopeful that over the next year, Reilly will continue making progress with his power chair, quadstick, and pacers while the finishing touches of the house are implemented.
IT'S ALL COMING TOGETHER
It's all coming together! Take a look at all of the exciting work that has happened over the past few weeks!
Reilly's Forever Home is coming along! We can't wait to see it finished. For now, check out the second driveway pour.
There's progress on Reilly's forever home. The first of two concrete pours is in the books, awaiting the final pour and then onward to the pavers! Check out the photos of the new driveways!
WHAT REILLY LOVES
In this month of love, we asked Reilly what he loves:
-His family and friends
-Hammy, his pet hamster 🐹
-Using his iPad to play Minecraft, Pokemon, and Plants vs Zombies
-Texting mosquito🦟 and snake 🐍 emojis to his Mom
Reilly is doing great in school and is often a comic relief to those around him. Right now he doesn’t leave the classroom at lunch, but his teacher has created a “lunch bunch” group which consist of four randomly picked students to eat lunch with Reilly. It’s great to see him and the other kids engaging.
His back continues to look great since we’ve taken things slow and cautious. Unfortunately, due to his bladder management, he’s limited on how long he can stay at school. We will be doing a Urodynamic test with his doctor soon to see if he would benefit from an additional GTube that would go directly into his bladder and drain into a bag. Yes, another invasive surgery, but this is inevitable and the benefits far outweigh our current situation.
REILLY IN DA HOUSE!
IT'S COMING TOGETHER!
Check out the latest photos of Reilly’s forever home! The stucco is in the works and the drywall is up!
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