Reilly Update

Time flies! Reilly will be turning 9 in June!

We are super excited to announce that as of April 8th, Reilly has made his first in person school day since the first week of school.  Although it will only be 4 hrs. to start, we will take this as a big win.  From the first week of school at the end of August, Reilly had a pressure spot flare up on his lower spine.  We had the wheelchair company do several adjustments to accommodate his growth, but we didn’t realize until after the flare up and a visit to his rehab doctor with the wheelchair rep that he had outgrown his trunk support which was the true reason for the flare up.  We quickly scheduled a visit with his orthotics team who did a mold and scan of Reilly's back.  They created a hard plastic trunk support, but after 4-5 failed adjustments, we decided to go back to what had previously worked which was his neoprene compression Benik vest in a larger size.  Unfortunately, this was not the perfect solution and we encountered several failed attempts.  We kept in communication with his orthotics team, physical therapist, and rehab doctor while working through things that had worked for us previously.  Through this past weekend, we have been able to get Reilly up in his chair for 4 hours with zero pressure spots and will continue to increase the time by half hour increments until he is able to get back to school for the full day.  The school has been very accommodating to his situation, and we are very grateful for their support.

As most of you know, Reilly has always struggled with the humidification on his portable vent, and it’s become increasingly worse over the past 3-4 years.  Activities outside the home have all but ceased except for the occasional outing to a doctor appointment or a family member’s home.  He has been tethered to an electrical outlet for so long, but with some brainstorming and thinking outside of the box, we have finally come up with a way to get Reilly’s humidified vent mounted to his wheelchair.  The footprint on the back of his chair wouldn’t accommodate all the equipment needed but with the help of a friend, we had a custom 3D printed piece created that supports his medical stand along with both the humidifier and vent.  This allows space for an inverter and battery which are necessary to power the humidifier.  The downside is that we are trying to find a battery that will last more than 4 hrs. and not eat up any more room on the back of the chair.  This small piece of plastic, specialized bolt, and aluminum mounting support has literally opened the world to Reilly.  He’s no longer tethered to an outlet or constrained by discomfort. This has provided him with his independence and the world is his to explore how he chooses.

Since getting his vesicostomy in spring of 2022, Reilly was on a good bladder control streak until getting COVID in Spring of 2023.  Since then, Reilly has battled reoccurring UTI’s and incontinence.  Despite several round of antibiotics, medication side effects, daily flushing of his bladder with a vinegar solution, and homeopathic remedies, he has not been able to effectively and completely get rid of the UTI or incontinence.  The side effects of the medication and having a spastic bladder have thrown us a few more curve balls.  We are actively researching more homeopathic solutions while staying in touch with his Urologist on the best and safest way to combat this issue.  We are trying to find both short-term and long-term resolution for him since we do not feel that youth pants are a good long-term option.

​Reilly still has an oral aversion to eating solid foods which we haven’t worked on because his primary position since last summer has been laying down in bed.  This is a slow and tedious aversion to get over, but we still feel that this is something that we can change as we resolve other issues. As a family, we have set a new goal for Reilly to be pacing by the time he turns 10 years old.  This will help resolve the issue with the portable vent discomfort, free up some real estate on the back of his wheelchair, and allow him regain his taste and smell.  Your senses are essential for consuming food and Reilly is very intrigued with cooking and consuming food, but his senses of smell and taste are severely subdued due to having a trach.  Our hope is that by helping him toward his goal of pacing it will allow him to explore a whole new world of food.

Reilly’s is addicted to playing video games on his iPad and watching YouTube.  We are excited for him to learn how to use his quadstick as he gets up in his wheelchair more.  The quadstick will allow him more gaming capabilities on the computer vs his iPad since he’s currently limited to one action maneuvers.  He will be able to play Minecraft (his favorite video game) which is something he’s really been missing. There are a lot of amazing technologies coming up and we are excited to see the way these advances will support people like Reilly and the entire SCI community.  We take the little things for granted, but it puts things in a whole new perspective when you see firsthand how much these little steps of independence change the world for someone with an SCI.  The joy and excitement he shows when he can accomplish something on his own is truly heartwarming.