~seizure FREE me~

~seizure FREE me~

Saturday, May 22, 2010

{just rambling}

It's interesting how the dynamics have shifted around here. Spike, my youngest son, has always wanted to be in the same playing field as the big boys. Always striving to be equal to his big brother. Who is 15 months older then him. Spike and Atty are only four months apart, almost twins. Atty has always been bigger is stature then Spike and easily looks older then Spike by more then the mere four months. Spike has always been the 'little brother' the 'baby' of the family. That is until Strawberry came around of course. Even so he's still my littlest boy. Atty easily filled in the slot of middle child. I have noticed though that now ever since Atty's health issues Ira has switched and is now trying to be at the level of Bubu 'babying' his 'little' brother Atty. They cheer Atty's every little accomplishment together. They pick up the things Atty drops. They comfort him. They've been teaching him how to walk, and run and talk again. They protect him, and watch over him together like two big brothers. Spike took this on eagerly. But it snuck up on me. I watched him today helping to feed Atty and it struck me. They both treat Atty like he's the baby of the family now. Which is sweet but not all together helpful for Atty. He needs to start doing some stuff on his own again as he gets more capable but his brothers are always stepping in and doing it for him. I think Spike will probably always seem like the older one now in every ones eyes. He has in a lot of ways always seemed like an old soul and I know he likes to feel older so I don't think he will give up this new position if he doesn't have to. Atty's never been one to fight for much of anything, he's super easy going about a lot of stuff. It will be interesting to see where this shift takes us and how the brothers will adjust together. So far as I've said Bubu and Spike are pairing up. So Atty and Strawberry are spending a lot of time together. It's not that the other two boys are leaving Atty out, Atty just chooses to hang out with Strawberry and I instead. I always though of the three boys as being together in everything but now I don't know if that's the way it's going to go.

Atty went through another rough patch, he had to be switched to sugar free for one of his medicines and had a hard time adjusting. I think he might be coming around now. One of the days last week he had a lot of hard drop attacks. He kept falling down backward, it's a really wild thing to see because he just falls straight back for the most part. Like some invisible hand yanked him back. Anyways he got a bloody mouth three times and ended up with a super fat bottom lip. I for the life of me couldn't figure out how he was getting a bloody mouth when he was falling over backward.

I also made a mistake one of the days with his meals and he ended up with extra carbs and I think that is also why he had the really bad day that was worse then the bad days he was already having. The day he ended up with all the hard drop attacks, I had screwed up the day before. It didn't dawn on me at first until I was going over his meal tracking sheet and realized my mistake.

He's also having a harder time sleeping again ever since they upped the dose on the medicine that was causing insomnia before. They had upped this medicine fairly fast when he was having a super hard time a while back and it had caused major insomnia so we went down on it. Then at our last hospital stay they took him off the most recent medicine they had put him on, the one I had told them wasn't going to work and ended up in the words of his doctor "poisoning him after all". At that time they decided to again up the medicine by a little bit that was giving him the insomnia. I just wanted him to be able to go home so I didn't argue. But now it really seems to be making it hard for him to sleep again. His doctor said we could go down on it back to the previous dose, but I'm afraid to make any more changes until we figure out the other sugar free medicine. In the mean time I am losing a horrible amount of sleep with his waking on top of the sleep I already lose with Strawberry's nursing at night.

At the moment though he is playing at my side while I type and that's always nice to see. The doctors have told me that they don't know how much brain damage he has suffered because of all of this. I am amazed by how clear he seems to be considering the days upon days of constant under lying seizures he has endured since February. He's certainly not back to base line, but we aren't out of the woods on this yet either. Yet.

1 comment:

Kat said...

Oh man. What a struggle. And what a journey. How sweet that the brothers help Atty out so much. That is such true love. Awesome.
Continued prayers for Atty, you, and the family. :)