Update from Dad

Hi to all. It’s been awhile since we’ve posted anything and I feel like we’ve let everyone down a bit in that regard. Of course, Chris is back in Alabama with Mom and Dad and our next step is Hyperbaric treatment with Dr. Harch in New Orleans but we haven’t worked out the logistics of making that happen. It will require renting a place to live for two months while we’re there to include hospital-type bed for Chris. It takes 40 “dives” in a hyperbairc chamber to see permanent changes in terms of the treatment and at the rate of one per day, five days per week, it’s going to take about two months to get 40 “dives” completed. So that’s the next step. Chris has had a couple of seizures here at home in Alabama since we returned from TIRR so his seizure threshold has apparently been lowered substantially. it seems the more you have the easier it is to have a seizure. We’re not real happy about that but Chris, in spite of the seizures, looks very good. Mom is keeping him very healthy and he is smiling much more now. It just melts your heart to see Chris smile. Mom gets him to smile more than I can but occaisionally he’ll smile for me when I’m doing “silly” things with him like singing stupid kids songs or generally acting the clown (in other words – being normal for me)! Hah! But there’s nothing like a smile from ouir Chris to make your day! The switch devices that we got from TIRR are good but we don’t use them as much as we could and, for now, we only have “Yes” and “No” programmed in for the ability to answer general yes and no questions. Although, Chris answers yes and no anyway without the switches so, if we can work in some alternative options like selections of music, etc, it might be more helpful in terms of Chris being able to have a bit of control over his own environment which may encourage additional movement to help control his environment, etc.he has, in general, more movement and it’s funny, Chris can do a big stretch in the morning in bed where he is activating arm and leg muscles like one would when they’re doing a good ol stretch in the morning, but he, obviously, doesn’t have the neuro connections to make similar motor movements outside of the stretching with the exception of some arm and head movements. It’s very strange that the neuro connections are there for one type of motor movement and not other types/areas. We, of course, continue to monitor for scientific “breakthroughs” in medical technology to find something to assist Chris such as stem cell treatments or even chip implants to cause motor movement or allow motor control. They are doing remarkable things with parkinsons patients using chip implants in the brain that completely eliminates any tremors with a remote hand held switch to turn on the implanted chip. So, the technology is coming, we have to keep Chris healthy physiologically so he can benefit from these advances down the road a bit. We appreciate everyone monitoring and posting here and I’m sorry for not having provided an update in a very long time. Your words give us encouragement and are very much appreciated! Without getting on my soapbox about our healthcare system, we are generally disappointed in “the system” and how in America you can very easily go broke for healthcare – an alien concept in most other civilized countries! We are a country of “haves” and “have nots” when it comes to health care in this country.
OK, off my soapbox and on my bike!
We love you all and very much appreciate your words of encouragement. Thank you to all.
The Giles Family.

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