Wednesday 23 July 2008

Wednesday, July 23rd


This is quite a week... there's a huge typhoon moving across our area. Internet service isn't reliable, so I'm not even going to try and do anything here today...

This means I have to postpone my trip to the Immigration Office... the banks are closed, all government buildings are closed, but the 7-11s are all open...

Tuesday 22 July 2008

Defunct

Well, it finally happened...


the Cur family camera has died...

For the past month the lens wouldn't open and close properly, and now the on/off button won't work. So, I think I have enough material for the coming Wednesday blog, but I always envisioned this as a visual blog...

I'll have to see where this leaves the blog... probably in silent running for a few months until we can muster up a new camera. The Cur family car also died last week, after a few weeks of trouble, so we need to see if that's salvageable before we move onto photographics... It's been a good camera, but we've given it a lot of use.

Check in tomorrow for the Wednesday post...

All the best...

Sunday 20 July 2008

Monday, July 21st

Just a quick movie this post-weekend post... more of Calvin doing his exercises -- he's on my lap as I type this. He and the other two are doing pretty well... there was a tropical storm through here last week, so that always drains us.

So, not much really... enjoy the movies!











Thursday 17 July 2008

Thursday, July 16th

















So, Gosia went to the nephrologist yesterday, and Calvin's kidneys have gotten worse. His creatinine level went up from 1.1 - 1.2 in the past three months.

He's "safe" until it gets to 3 or 4, and then the doctor says the level just shoots up.

At 7, dialysis becomes urgently necessary.

So, there are all these factors to take into account, blah, blah, blah, but it seems like that will be in four years from now.

Plus he's started growing!! He's outgrowing his clothes! This is really great, considering his battle with nutrition, but his growth ironically places a greater strain on his kidneys.. I suggested a diet of coffee and cigarettes once, but it didn't fly with the nutritionist. They're always opposed to homeopathic remedies...

So, four years is a long way away, etc, etc, etc, but it doesn't seem that way. I've been feeling for a while that this whole thing is entering a new phase. I can't explain why I feel that way, maybe it's just emotional, maybe it's because he has grown a good bit recently and really isn't a baby anymore -- he's going through what must be near his last round of teething right now, too.

But I'm very optimistic about this new place, which is where this week's pictures are from. They say he's already made some improvement towards sitting, so we'll see where this goes too. Getting him sitting-creeping-crawling is very important for his respiratory system. He still doesn't breathe correctly -- he breaths from the chest, not the stomach. Lack of respritory strength leaves him succeptable to a variety of illnesses that he wouldn't have the breathing strength to recover from, so that's another reason it's so important to get him on this path.

I think that's all for this mid-week post. Movie down below, first in a series!
See you Sunday.

Thursday 10 July 2008

Sunday, July 13th




























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!

Monday 7 July 2008

Sunday, July 6th


Just some pictures of the kids at the park this weekend.

The weather has been humid, so my head is all stuffed up. Quick post this weekend

You can see how much Eli loves the camera...

He stiffens up for every picture, and then gets mad at me because he looks funny in the pictures...