Tuesday, September 14, 2010

Neurologist Update

Today we went to visit Ryan's neurologist. It was nice to see Dr. Seals, as always, and it only took about 2 hours total. :)

We went with 2 primary concerns. First, Ryan is having at least 15 to 25 seizures each day. Second, I wanted to discuss getting a suctioning machine for Ryan.

The seizures have been steadily increasing. It is a constant struggle to keep his meds at the right level, especially since Ryan is still at the age when he's constantly growing (thankfully). It's also possible that the Texas heat is contributing to the increase in seizures. Unfortunately, the air conditioners at home do not seem to be able to beat the Texas heat and humidity. We're going to keep him on the same meds, but we're going increase his Lamictal over the next couple of weeks. Then we'll have his blood levels checked at the end of the month.

{{Ugh. I really dislike that we have to check his blood levels. The poor little guy is such a hard stick. I know we must do it to take good care of him, but it's heart wrenching to hold him while they dig for veins.}}

The other issue ... Ryan's choking. Ryan chokes daily. Multiple times each day. Most days he can clear it himself. We just help him set up and encourage him. However, about once ever 3 or 4 days, he has a severe choking episode that causes him to turn dark red ... or light grey. It's a horrible thing to watch. I feel so helpless watching. So inept. I live in fear of a day when he won't be able to clear it for himself. So, today I asked the doctor to write the orders for a suctioning machine.

That's when the doctor's visit become one of those moments.

Those moments. I've had a few of those moments during the past 2 years. Moments when you realized that life isn't what you thought it would be. Moments when you have to face reality.

One such moment was when we got Ryan's wheelchair. The reality was that Ryan really needed a wheelchair.

Another moment was when I first took Ryan to church in a wheelchair. The reality was confirmed. Ryan is disabled.

Another moment was when I first saw my port in the mirror. I really had cancer.

This is another one of those moments. We need a suctioning machine. The reality is that Ryan might not be able to clear his own saliva. It sucks (haha ... didn't really intend that pun, but oh, well ... haha). It really sucks that my sweet little Ryan struggles so much.

BUT ... on the bright side, I would be fit and well read if I worked as hard at my goals as Ryan works at everything he does. He is truly an inspiration. And, while it stinks to need a suctioning machine, I am very thankful that the technology exists, and I pray that we will never need it.

No comments: