A Few Answers

We saw the director of the CP Clinic today and got a few answers, as well as a few more questions, but I'm focusing on answers right now.

We will be going ahead with the spinal tap. We were leaning towards that anyway as Isaiah has another necessary procedure that would require sedation so we might be able to do them together. We will also be repeating an MRI, hopefully all on the same very LONG day. The spinal tap will answer the question of whether he has a particular treatable condition, as well as whether we need to do some of the diet modifications I discussed in the last entry. The particular condition we are looking for is a condition in which the brain does not convert and use folic acid properly. This can be treated with supplementation and we have read amazing stories of recovery. Obviously, that would be our greatest desire, but we're trying not to get our hopes up for that. The doctor is looking for several things in the spinal tap that could be treated with different medications or supplements. This is the first time there has been any talk of something treatable so it's hard not to get our hopes up.

I hate appointments at the CP Clinic because they last for hours, Isaiah gets grumpy and I get overwhelmed with information. In the past, I have left there in tears on a number of occassions. Today was overwhelming as well, but it was encouraging to watch Isaiah follow directions that he did not follow a year ago. They are simple things like "give me five, squeeze my hand, pick up the paper and give it back, etc." but it was good to see some progress. They were also much more encouraging of the things we are already doing with him which was different from previous appointments where I left feeling beaten up. They encouraged the spandex suit and another communication tool we are considering buying. Also, out of the blue today the woman whose blog I enjoyed reading last week mentioned the benefits of this specific communication tool. Glad to get a little clarity on their effectiveness with other patients prior to purchase.

I have also decided to "squeak" about the bus situation. We found out today that the routes are decided upon union regulations and seniority. Isaiah's bus has had five aides in the past two weeks as they decide which route they would rather have. That is really a mess when you consider these kids' needs. I tried to call the director of transportation today, but decided to email him since he wasn't available. I am also planning on being squeakier next school year.


Thanks to everyone who has taken the time to catch up on the blogs, who have emailed me this week and for anyone praying for us.