March 29th 2009 - Alicia update

Alicia is sleeping right now as I am watching March Madness. She has been having a big last couple of weeks. Her doctor wanted to try to adjust some of her seizure medicine, so we have been weaning her off some of her meds. We were told that Alicia may have some seizures during this process, but it had been so long ago that it felt like the seizures were a thing of the past. I noticed about three weeks ago that every once in a while her eyes would flicker a little. I wasn't sure what it was, but then two weeks ago, as we were still tapering down the medicine, she started to have a little longer and stronger episodes when she woke up. It got a little scary for Linda and myself because it looked a bit like the beginnings of the infantile spasms that we all suffered through this past summer. We worried that all of the great progress and development that Alicia has accomplished would somehow be lost and we would be starting all over again from scratch. Two Thursdays ago Alicia and Linda stayed overnight in the hospital to get an EEG so we could see what kind of seizures she was having. Luckily they were not the infantile spasms, they were just other types of epilepsy that were occurring because of the change in medication. Basically the doctors have been trying to take away one type of medication without raising the other type of medication. Now the doctor still wants to take away the one kind of medicine, but control her epilepsy by raising the other type of medication.

Even though these little episodes are not serious it can put Linda and myself into bad moods. It is a reminder that things are not 100% all better. When the seizures start we first worry about the immediate future and then we sometimes wonder about the long term future. It is comforting to know that when Alicia has a little spell, that it does not hurt her whatsoever or do any kind of damage to her brain. As a matter of fact, Alicia will come out of an episode with a huge, huge smile on her face. I can only think it is like when someone passes out and they get an endorphin rush coming right to their head when they wake back up. We usually try to stay in the present, but when things start going haywire it is hard not to think about Alicia's future. There are many distressing thoughts that can go through our heads when Alicia is having epileptic episodes. What is Alicia going to be capable of achieving? Is the developmental gap going to widen or narrow? When will Alicia be talking and walking? Will she go to a regular ed school or will she always need a special educational approach?

The great thing is that through all of this Alicia has been showing a lot of improvement in all areas of development. She is learning how to fed herself with her baby spoon. It is adorable how determined she is to get her food in her mouth. To think that two months ago she wasn't really using her arms for much of anything and now she is working on feeding herself is inspirational. Tonight she had lasagna, what a cute little mess that was.

Alicia is getting a lot stronger. It is great to see so much progress in such a little time. She is now able to roll from both her back to her stomach and then from her stomach to her back. It was funny this past Thursday, Linda called me at work to tell me that Alicia was rolling across the mat and onto the floor, back to stomach to back to stomach to back all in the same direction. Alicia has also been pushing a lot in her little walker. She only goes backwards, but she enjoys the movement. Finally Alicia has been really progressing in her readiness to crawl. She is getting up on both her knees now and pushing her cute little bum in the air, trying to go forward. She is still working on getting her upper body strength up, but it is definitely going in the right direction.


Pretty girl in her airplane


Alicia having a laughing attack from Daddy's zerberts...


Alicia charming the nurses at the hospital


Alicia is out for a walk


Mommy's home made lasagna, mmmmmmm....