It’s been ten days since I last updated you on my grandson’s progress. He continues to do well in therapy. He can walk moderate distances now, and has learned to roll his own wheelchair around. He appears to have control of all of his appendages, but has some issues that are being worked on in therapy.

He still has trouble with fine motor control. What this means is that he cannot control his fingers individually, so he eats like a small child by grabbing whatever he wants to eat in his fist, then cramming his entire fist in his mouth before opening his hand. That’s one thing that we have been working on with him- trying to get him to pick up food with just his index finger and thumb. I was using M&M’s to try and get him to feed himself.

He is still non-verbal. He can make the “f” and “s” sounds, but can’t seem to use his vocal chords on a voluntary basis, nor can he move his mouth for other sounds. This seems to frustrate him while he is trying to talk. I’ve been working on any word at all. The one he seems to enjoy shooting for is “fart.” After half an hour or so of trying he begins getting angry and stomps his feet. I can’t imagine what that is like, to want to communicate and be unable to. The family has been taking bets to see what his first word will be. I don’t care what his first word is, he can shout an expletive for all I care, as long as he can come back to us.

The therapists have given him multiple cognitive tests, and have determined that his thought processes are working fine. In fact, he is reading at a 5th grade level, so he is far ahead of where he should be.

There are a few personality changes that have become apparent. Foods that he used to enjoy, he can no longer stand. The neurologists say that this is common in people that have sustained brain injuries- as the brain rewires itself to route new pathways around the damaged areas, some things will be different.

All in all, he is making what they say is good progress, and is on the path to recovery. When that will happen is anyone’s guess, but typically it takes anywhere from a six months to two years to see a complete recovery. The goal right now is to get him to a point where he can be home schooled, so that we don’t see him fall too far behind his peers. In the short term, getting him moved from an inpatient status to home health care is on the horizon. We are hoping that he will be home with his family in time for Christmas.

It’s easy to forget that eight weeks ago was the last time he was well. Just six weeks ago, he was still in a coma and we were worried that he wasn’t going to survive. Three weeks ago, and he was still in the intensive care unit, with doctors telling us that he would likely be paralyzed for life. He continues to improve, one week at a time. Whatever the future holds for Rion, it will be better than the one he had just a week before.

Categories: My Grandson

6 Comments

Craig · December 1, 2022 at 8:15 am

Good to hear of his progress. Still praying for him. I have a friend who had a bad car accident and ended up with slight paralysis. He had to learn to speak again and his first words were sh*t and f*ck.

Joe Blow · December 1, 2022 at 9:14 am

May God Bless you and your family. I cannot imagine the emotional roller coaster you must be on.

D · December 1, 2022 at 11:38 am

> The therapists have given him multiple cognitive tests, and have determined that his thought processes are working fine.

That’s amazing news.

I humbly suggest that as a “break” from all the stress of testing and rehab, you (or someone) sit down with him for an hour every day and read him a book. When I was a kid myself, my parents split. The result was that my mom was putting herself through college and didn’t always have a babysitter. At ~12 years old, I would get taken to school with her and dropped off at the center that was studying children with Downs Syndrome and/or Autism once or twice a week.

One day I brought a book in because I was really into it and wanted to read. I ended up reading it to them from the beginning. I think it was The Hitchhikers Guide to the Galaxy. They looked forward to me being there, and the staff were amazed that everyone sat around listening intently for an hour or so.

Everyone was apparently pretty bummed when I turned 13 and my mom felt I was old enough to stay home and watch my younger sister for a few hours every day.

Reading a book to him will probably be therapeutic to both of you. He’ll remember it his entire life, you’ll both get a good story out of it, and he’ll get a chance to relax from the pressure and stress of everything that’s going on.

Maybe start off with a short story or something.

Anyways, I’m still busy shuffling around a few funds in my retirement investments and hope to make a donation soon. Hopefully that will help all the adults stress a little bit less about the financial strain.

Al · December 1, 2022 at 5:11 pm

So happy to hear he’s making good progress. I get depressed with everything going on in our country now but hearing that your grandson is heading in the right direction helps to brighten the day.

Elrod · December 1, 2022 at 5:34 pm

It absolutely sucks tht he’s going through this but it’s great that he’s improving. Slowly, which will continue to test his patience.

And the docs offering encouraging news is good, too.

I’ll second the “read to him” D mentioned above. If there’s a story, or it winds up being several, it will give his mind some stimulation outside the trials and tribulations he’s wrestling with and give him other places for his mind to go for a little while each day. Pretty soon he’ll be reading himself.

FYI, books on tape, meaning it’s YOU reading on tape for those times you can’t be there, is also something to consider. Personal engagement and commitment counts a lot.

Phil B · December 2, 2022 at 5:42 pm

Try getting him to sing what he wants to say. One speech therapist I knew said that it helped with people that had extremely bad stutters because it employed a slightly different part of the brain. It could work here.

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