Sunday, December 07, 2008

Roller coaster

Another week gone by and another week of fighting colds and tummy bugs and the seizures keep creeping in. I've been really discouraged all week by this return of seizures. He had probably 20 today and 2 big ones already this week. I keep hoping it's just a little tummy bug that Titus seems to have too, but I don't know for sure, he has minimal symptoms. This has me guessing whether or not the diet changes are really going to be the ultimate answer for him like I hoped they would be. They aren't enough to keep all of them away, so we need to figure out what our next step will be. I can't believe it, but I've been considering adding a new med and seeing how it goes. I have been doing a lot of reading the last couple nights about some more recent research on MAE and they in the medical articles they narrow down the treatments that seem to be effective for kids with it. I think we need to be open, there's still a couple drugs that aren't as heavy duty that we would be willing to try. This article affirmed that for me, so now I think we just need to wait out this illness (or maybe winter) and decide what to do next. It has made me realize that it is easy to become complacent with "just" a few seizures a day. I need to get back to fighting any and all seizures. It's not fair to him for us to settle for anything less.

I have tried to make an effort not to overthink things with this. If I get all stressed out and worried it doesn't help anything, especially him. But, this week, seeing more drops...watching him fall 2 feet away from me and not being able to catch him has been pushing me back down that road. Everytime he gives me his sweet smile and I see his little gray tooth (that's gray because he fell on it) it's a reminder of the battle he's in. His behavior continues to decline and I often don't know how to deal with it - which leaves all of us frustrated. This week, the idea of a seizure dog has popped back into my mind. I can't help but wonder if it would be a good distraction for his horrible behavior. Only problem is these dogs can cost up to $15,000 depending on what company you go through. But, lots of people do fundraisers to cover the cost of it all. So, I will research and see what I can find.


Rebecca said...

Hey there honey... I was doing some poking around, and this is one of the few sites I came up with that will place a dog with a child under 12

One of the things I like about this one is that while you can do fund raising, if you're just short, then overflow from someone else can help. Also, because it goes into your 'account' you can see how you are doing. However, of course, it doesn't say how much. But, since they place their dogs with 2 year olds, they might be very understanding of the age ranges of your family. Also, one of the ways they train is for the parents to be able to send the dog in to go be with the child if you need to go into another room, or if the boys are playing and you don't want to inturrupt, you can send the dog in. That seems *very* helpful for you, especially how hard you work to balance normalacy for all your beautiful boys!

I really think an assistance dog would be a really great thing for everyone, but of course, your heart will lead you, and I have *no* doubts that a solution will be found.

Also, for fundraising, let me know what I can do to help as well, for whatever :)

Rebecca said...

Merry Christmas Colleen n everyone!!