Thursday, May 1, 2008

What price independence?

Let me start this by saying that John is doing fine and I'll post some new pictures soon. He's fighting a little intestinal bug right now but he's fighting it at home and doing well. He's needing a little more rest, and a little more fluids than pre-bug but still has that same winning smile and cute little boy attitude as always.

John not feeling good though prompted us to visit a previous conversation with his physical therapist this week. At the first of the year we were asked for probably the 3rd time in John's life if/when we were going to consider getting him a power chair, a motorized wheelchair, at that time, as before when it was suggested we didn't think we needed to address this because after all John had his gait trainer. Well since he has gotten strong enough that he doesn't need the seat in the gait trainer to hold him up anymore, it also means that there is no place to rest if he needs it and though he can make it around the block, or through the hospital corridors and such when he is feeling good it takes most of the energy that he has and doesn't leave him a lot of energy to play with when he gets where he is going. I toy with putting the seat back in, but he does walk much better and much more comfortable without the hard plastic seat between his legs while he's trying to walk.

One of our earliest and also our constant prayer for John is that God will lead us to do those things for him which will let him attain the most independence he can achieve. In the past this meant a special chair for him so that he could sit at the table without one of us holding him or without being ineffectively propped up with pillows and such. This chair is much loved, and while he doesn't need all the features that he needed when we first got it he is still more stable in this chair than in any other seating arrangement. This is where we sit to work on really fine motor things so that he can concentrate his energy on making his fingers work and not have to worry about compensating for his lack of stomach muscles to hold himself up perfectly. His gait trainer has certainly opened up a world of independence for him, but he can't as of yet get in and out of it by himself and so still needs one of us to come and help. The time has come that he needs a form of mobility more efficient than scooting around on the floor, and more independent than needing one of us to hold it still so that he can get in or out.

We've started the process of getting John one of these Play/Robo Chairs. Medicaid is a long and red-tape laden road for this kind of equipment, but the price tag is way beyond what Mark and I can afford and the chair looks to be just what John needs. We are in hopes that John will get to try one out sometime this month and that by fall will have one of his own. I was worried that we wouldn't be able to put it in or on our current vehicle and we so do not want to purchase another right nor do we want to get another before we can pay cash for it which would take us a long time to save for, longer than the Medicaid slow dance takes but then we found this Powerchair carrier that will let us put it safely right behind the Jeep and with practice John should be able to even drive it up there himself. At this point we are excited to see these things come about, I see the times where John has wanted to go and do but just can't and it will be nice for him to have the freedom to do more of that, and also to have the energy to enjoy it when he gets there.

While we are on the independence bandwagon around here we are also going to be investing in a keyboard and mouse made for kids. We both think that John is smart enough to run some of the computer if he had a better way to access it. Those things too will take some practice but at some point I'm sure that he'll be able to negotiate himself around his own favorite YouTube videos and start working through some basic kid level games, and probably doing more than I imagine. We find it's also time to drag out the dreaded AET device. As much as I have disliked this thing in the past it would be nice for him to be able to actually call us from another room without having to cry or fuss to get our attention. This is the device that speaks when you push buttons on the screen, we've never figured out exactly how to integrate it into our lives or what use John would have of it, but now that he is trying to potty train and needs to go when he needs to go the use of it has become rather obvious.

All those times that Mark and I both wondered why we were born several centuries too late when we both thought we would be happier in times when things were simpler and more honest and disputes were settled with swords and six-shooters we, over the last four years have been given our answer, no matter what is wrong in this world at this time, being here where technology can bring independence to a sweet little boy is priceless beyond measure.

2 comments:

elephantschild said...

I vote for the red one. :)

Gina said...

Thanks, me too, and I'm POSITIVE John will be voting for the red one too!