Well, On Saturday we had a group meeting of families of brain injured kids in Tainan.
Very informal... there was a small kitchen fire right before we arrived, and the place didn't even have a kitchen! It was one of the parent's massage-acupuncture business... it was after hours, so they set up a folding table, set up a portable camping stove, and cooked a hot pot. We brought pesto. Taiwan is awesome for these things...
They had a matted area for the kids, so we hung out, talked, played and ate. Very nice. Calvin had a wonderful time... he really liked being around the kids and had a great time playing with some of their toys. Eli and Rhiannon had a really good time, too.
Eli's made friends with the siblings of the brain injured kids, and he knows so much about the brain and brain injuries now. He was able to figure out what symptoms the kids had and why they have them really easily. Every once in a while, it's a shock to me just how much he understands about the human brain because of Calvin.
Anyway, I'm going to spend this post on Calvin and his list of ailments and treatments! It's like Sunday at the nursing home, but way cuter.
As I said, we've gotten closer to some of the other parents, and one of them suggested to Gosia a new therapy place. The place has about 40 families right now, and they're very clear and up front about what problems the child has, what he or she would need, and how serious it is.
I'm not going to start railing on the hospital, but it's not as intense as Calvin needs and it doesn't promote independence on his part. Plus, they want to work on his walking. Gosia and I believe he needs to 1. creep, 2. crawl, then 3. walk. This is in line with what we learned at
the Institutes when we went there before coming back to Taiwan, and it's in line with this new place.
So, Gosia's going to start going there two days a week...
Second is acupuncture. Calvin gets that at the hospital once a week, and many parents have said that this has an affect on their children. One of the parents in our little group said that he thinks it helped his child, so that's good enough for me. It's a long term thing, though.
Third is the Saint Theresa Center. It's about an hour's bus ride in the morning out into the countryside. These are the pictures I have up in this post. Gosia took them when she went out there this week.
The place is a center for the brain injured, and has some good resources like the stimulus room. Lots of lights and things. They're going to help us with some home therapy for Calvin, so that'll start up soon. Very good people, very generous. They're trying to get the home therapy for Calvin covered by one of their doners, and they told Gosia she can come and use their facilities without charge. Plus, they have a wheelchair accessable treehouse...
Plus, Gosia will be going to the hospital's rehab center as usual, minus one day (for the new place) ... and then there's the normal array of tests, and doctors visits that pop up around the month.
The other day Gosia went to the nephrologist, to see about Calvin's kidneys. They have gotten a bit worse, but they've also grown a bit. There are more bumpy calcium deposits and dead material around them, so we need to talk to the doctor (this week, I think) to see what that means. Eventually, I assume, it means dialasis will rear it's head, but that's hopefully still a while away. The kidney situation, even with best outcomes, has already halved his life... so we'll see where that goes.
But for now, it's nutrition and getting him mobile. Gosia has a very full week, plus all the therapy she does with him at home... and with me changing jobs, it's been a bit stressful.
But that's life..
On Wednesday I'll have pictures up from the new place... I'm sure the place has a name.... The woman who heads it is called Mrs. Chung... for now it's "New Place"...!
See you then!
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