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.
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