Wednesday, May 20, 2009

Hematology update

Aidan had a follow up appointment this morning with the hematologist. Before his appointment though, we went in for some blood to be drawn in the lab. This lab work is to check the level of the seizure medicine in his blood. They also drew blood to test for allergies.

According to the doctor, everything they've tested him for has come back normal so it doesn't look like the cause of his brain bleed is due to a problem with his blood. It's looking like it is more neurological, and my guess is that it is associated to the seizures.

It's all one big huge interconnected circle. It's frustrating. I just want his seizures under control. They were happening less frequently until last week when the fever spiked and he was put in the hospital. I'm sure it's related somehow.

In the morning, Aidan is scheduled for an EEG. It's supposed to be a sleep-deprived study, but I'd love to know how I'm supposed to keep him awake until midnight and then let him sleep for 3 hours and then wake him up and keep him awake until 8am. I'd love to see any of them keep him up, because I've tried it. Aidan can sleep through anything, and quite frankly, I don't care to only get 3 hours of sleep myself. We know he's having seizures already, so I'm not really sure what this EEG will show us. I guess we'll find out when we talk to the doctor.

As far as everything else goes, Aidan seems to be doing okay. His lungs are clear and despite the seizure activity, he's been alert and is smiling a lot more. Yesterday I was taking his picture and every time the flash warning light came on, he would smile for the camera.

For those of you that have purchased entries for this months raffle, I will be returning those funds to you. We have had very few entries, and it isn't even worth the time to do the raffle. Aidan's therapies will just have to be put on hold for a while. While this isn't anyone's problem but our own, we're struggling to keep a roof over our heads and our van needs work. The additional therapies and supplements that Aidan takes are expensive. I don't like asking for donations and I'm not about to beg anyone or ask anyone to feel sorry for us. We thought that by doing a raffle, at least you have a chance to win something. I don't know... maybe I'm wrong.

I greatly appreciate the support that we have had and the continuous prayers for Aidan. Please don't take my last statement as my being ungrateful, because I'm not. Personally, I'm just having a very difficult time with everything.


1 comment:

Cindy said...

Can you get him back on the Ambien?