A little piece of heaven

A couple of weeks ago I took Nathan to the park in his kidwalk and he had a blast watching this one kid running around the park.

After some time, the kid came up to me and started asking me what kind of skateboard Nathan was using. He couldn’t understand why Nathan couldn’t talk or why his head drooped the way it does.

The mom came up to me and apologized for her son, and asked me if Nathan was using some a new kind of baby walker. As much as I wanted to say, yeah, it’s the new rage these days, I told her he had a brain problem.

She was super sweet and we started talking and she told me she’d just moved from the East Coast. So I asked why etc and she said they’d moved for her husband’s work because he is some kind of biomechanical engineer.

Come to find out, he was brought out from Boston by the Alfred Mann Foundation to work on a microstimulator. She told me it was being used now for stroke patients and that I should talk to her husband about it.

Well as it was the middle of the holidays I waited to call her husband until yesterday. So we talked for a little while and he told me about the device but he said it’s not really ready for clinical trials.

This is the device:
The Implantable Microstimulator

Basically it’s a very small chip the size of the top of a pen that gets surgical implanted between the skin and muscles in one place of the body (not sure which). The chip is wirelessly connected to a control device which, when activated, sends eletrical impulses to the nerves. The chip is active for many many hours so the nerves are receiving constant stimulation. This system bypasses the need for the brain to activate and manage the pathways for the nerves to work and movement to follow.

Eventually, the brain is so stimulated by the repeated signals that it learns the movements and gains teh ability to regain or gain a function that it lost or never had.

Amazing, huh!

This is from their website:

New Product Development, the Injectable Microstimulator System
In the US alone, 4.6 million people suffer from stoke and as many as 30% of these patients are presently paralyzed. In 1999, more than 1,100 000 American adults reported difficulty with functional limitations, activities of daily living, etc, resulting from stroke (SIPP).

To address this need the R&D team at THE FOUNDATION is developing a system of battery powered injectable microstimulators and microsensors, each of which can be controlled and monitored up to 100 times a second via radio communication. This system is intended to restore function to partially paralyzed limbs. For a stroke patient with partial paralysis, it will appear to as though he has regained control of the limb. THE FOUNDATION hopes to make the process of injecting the devices a simple office procedure, reducing the cost of an out patient, surgical procedure.

In addition, to bring this technology to market, the Foundation and Bioness are working together on this, the next generation microstimulator. This exciting device will be powered by rechargeable batteries and will communicate with others like it through a wireless network. Together they will restore function to patients with severe neuromuscular impairments through coordinated sensing and stimulation. Through a joint Foundation and Bioness program, clinical investigators are being recruited to research the vast potential of these devices so that this exciting technology may be rapidly available to the public.

After reading this, I researched and found Bioness’ website, and was so disappointed when I called them and they said the products they do have available based on this technology are not available for children, only for adults.

I was so upset!

Why is it that kids with CP are so ignored by the medical community and society in general? Whey is it that there are a million foundations for kids with leukemia or cancer but NOTHING for children with neuromuscular disorders? How come nobody cares about the plight of families of disabled children?

I wish I could understand why this is happening. Most importantly, I wish I could change it. I would do anything to change this situation. I wanted to, which is why I set up Empowering Special Kids.

But I found it was hypocritical of me to spend time working on the non-profit when Nathan still needs so much of my time. I figured that before I spent time and energy on the non-profit I need to make sure all of Nathan’s needs are met.

I wish many of us parents of disabled kids could form an alliance where many of us work together and share a little bit of time and energy to start creating a change towards disabled children. It really is time for change.

Ellen wrote a wonderful post yesterday:

Ever wonder about the “normal” version of your child?

I think it’s a realy great question and the answer, a clear, resounding yes.

When Nathan was smaller I used to think of this often. I would look at his typically developing friends and cousins and it was like someone would stab me with a knife and twist it slowly. I would see them running and playing and see what Nathan should be doing and it would just hurt like crazy. I remember one day were were at a little gathering with Nathan’s little friends and I just walked out the door and left in the middle because it hurt so dang much. You watch them run and scream and jump and create the cutest sentences and you can’t help but think of the normal version of your child existing in a parallel universe who is doing exactly those things.

I don’t think it’s something you can ever stop considering.

What changes is how you deal with it. I can say that with every passing year, month, day, I get a little bit stronger, a little bit clearer about my mission, Nathan’s mission in this life. The percentage of times when you feel kicked in the stomach slowly reduces. Whereas before it would happen often, now it’s only rarely that I feel that intense pain.

Most of the time I just don’t go there. It’s like that deep dark alley in a bad neighborhood – you know better than to go there.

So I just don’t allow my mind to even think about how things would be different if Zic2 hadn’t mutated. Sometimes the thought comes barging in the door and it’s out of my control to avoid it. Most of the time when that happens I think of all the wonderful things that Nathan is and I know many of them are because of Zic2. I think Zic2 have made him a very special, empathetic soul. So I rememer that and then the normal Nathan doesn’t hurt. It’s almost like having a different child. You think of the typically developing child and there’s no way that child could’ve been the child in front of you because every moment determines the next and what we do and our limitations determine who we are.

So most of the times now I allow that child in a parallel universe to run and play in his own little world, while I cuddle the one in front of me and appreciate everything he brings to the world, to my world. It just seems like more and more I understand that there are no accidents and that my dragon warrior has his own mission that’s different from others, so the fact that he’s not doing the things other kids are doing just doesn’t bother me much. It’s like asking the cheese why he doesn’t taste and smell and feel like fish. You just wouldn’t do it. More and more that’s how I feel.

But of course there are always the mornings when I’m dead tired and sick and I don’t want to do yet another therapy or worry about making sure he gets all his supplements, that we do the masking, that I don’t forget yet another appointment, when I just don’t want to fight his resistance to nap in his hbot chamber, etc etc etc… and if I’m tired and depleted enough I do look up at the sky and say, if only if only if only.

I’ve been giving some thinking about our plan for Nathan’s therapies / well being this year as it’s the New Year and time to look at everything with fresh eyes. Also, next month we will have Nathan’s first IEP meeting and the slippery slope of preschool and school district therapies will begin.

I could really use some advice from anyone that is willing to help.

Since we came back from Montreal and other travels I have tried very hard to balance regular therapies with ABR with the program from the Institutes. We’re also doing a ton of stuff nutritionally and trying to get a dive a day in a mild hyperbaric chamber.

My mom kindly pointed out she feels I’m doing a little bit of everything but not enough of anything.

I know what she means but I am so afraid to cut back on what we already have. It’s hard to know where to focus energy.

Right now we’re doing 2 hours of trad therapy a day (combined between PT, OT, ST, and DT), Hippotherapy 1x/wk, Yoga 2x/wk, and we’re trying to get in 30 min’s / day of each ABR exercise (1.5 hrs / day). Nate takes his nap in a mHBOT chamber. He’s on a GFCF diet and on a bunch of supplements. I am trying to fit in 1 institutes program / day although I’ve not given that priority. Whatever doesn’t get done by 5 pm doesn’t get done as he gets his evenings off to chill and hang out and play.

On top of that Nathan and I have been pretty much non-stop sick for the last 4-6 weeks so it makes it hard to keep running around and doing everything. The last 2 weeks we’ve given up and done nothing.

I’m afraid that if I stop one or another we may be missing out on an opportunity. But perhaps I am doing just that by not spending enough time on any one therapy.

I know it’s hard and no one can tell me what’s best and ultimately I have to decide but I would love any feedback anyone can offer.

Thank you for your help.