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. 

Educating a child's classmates about spinal cord injuries is essential for fostering understanding, empathy, and an inclusive environment. Here are some steps to effectively educate classmates about spinal cord injuries:
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1. Speak with the Teacher and School Staff: Before starting the educational process, have a conversation with your child's teacher and school staff. Inform them about your plan to educate the classmates and seek their support and cooperation in the process.
2. Involve Your Child: Encourage your child to be part of the educational process. They can share their experiences, answer questions, and be a valuable source of information for their peers.
3. Choose the Right Time and Setting: Select an appropriate time and setting to conduct the educational session. It could be during a class meeting, a special presentation, or a designated time set aside for discussions.
4. Prepare an Informative Presentation: Create a presentation or interactive session that explains what a spinal cord injury is, how it can happen, and its impact on mobility and daily life. Use age-appropriate language and visuals to engage the classmates.
5. Share Personal Stories: Encourage your child to share their personal experiences with their classmates. Real-life stories can be powerful in helping others understand the challenges and triumphs of living with a spinal cord injury.
6. Use Visual Aids: Incorporate visual aids, such as diagrams or videos, to illustrate how spinal cord injuries occur and how they affect the body.
7. Discuss Adaptive Equipment: Introduce the concept of adaptive equipment that individuals with spinal cord injuries might use to enhance mobility and independence, such as wheelchairs or assistive devices.
8. Encourage Questions: Create a safe and open environment where classmates feel comfortable asking questions. Answer questions openly and honestly, ensuring that misconceptions are addressed respectfully.
9. Promote Empathy and Respect: Emphasize the importance of empathy and respect for individuals with disabilities. Encourage classmates to put themselves in their peer's shoes and understand the challenges they may face.
10. Highlight Abilities and Achievements: Shift the focus from limitations to abilities and achievements. Share success stories of individuals with spinal cord injuries who have achieved great things in various fields.
11. Encourage Inclusive Language and Behavior: Educate classmates about the importance of using inclusive language and avoiding derogatory terms or jokes related to disabilities.
12. Follow Up: After the initial educational session, follow up with periodic discussions or activities that reinforce the message of inclusivity and understanding.

Remember that educating classmates about spinal cord injuries is an ongoing process. Encourage open communication and create a supportive environment where students can learn from each other's experiences and grow together. By promoting awareness and empathy, you can help create a positive and inclusive school community.

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! 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.