Tuesday, November 25, 2008

Bubble Boy

Yet another boring-post-day. Nothing...Nada.

Spasms are a little better amount-wise...but intensity...Whoa. He hasn't walked solo since about 11 am. He had a slam on the carpet and that was enough for me. He cried, I cried, and our social worker almost cried. It just breaks my heart knowing that it's dangerous for him to do what he loves most of all. Walking.

So, I got busy trying to find a protective helmet immediately after the social worker left. I called the insurance company first. Then the durable medical supply places. Then our epilepsy clinic (for recommendations). Then got online to check them all out again. Everything is set for when we actually choose the one we want...After we get a recommendation and certification from the epi. So, surprise, surprise, that's the only thing holding us up! No call back...as usual.

I'm giving it until noon tomorrow and I'm going to use my best judgement to order one. The longer I wait on them, the longer it will take to get the ball rolling. I probably know better what he needs anyway. I'm the one who knows exactly what gets impacted on falls...I just thought it would be helpful to have someone with experience recommend a good one. There's several to choose from.

I'm not giving up yet on the vigabatrin, but I'd like to be prepared if it doesn't work. I've already cleared out all the "problem toys" that make me a nervous wreck for him to play with. I thought that would calm my nerves a bit. And it did...until he started hitting his head on the floor so hard. Now, he's back to being "bubble boy". That's what I need...bubble wrap for every hard surface in the house...hmmm.

Anyway, he's been such a sweetheart today despite Mommy being so controlling! I've been getting tons of smiles and giggles! He's coming around in that department. Much more interactive. So good to see...I missed that so much!

Madie and Trev, I'm thinking of you two!


JSmith5780 said...

He's still at a low dose. It's too soon to throw in the towel. Some kids get fewer harder seizures before they stop altogether, so maybe you are headed in the right direction.

Here's hoping for EXTRA reasons to be thankful tomorrow!

Janna said...

I was sitting here looking around my house at all the dangers it would pose and I know I can't begin to imagine what you guys are going through. I'm sure this is sooo frustrating! I am sending lots of good thoughts your way. I hope you guys have a nice Thanksgiving!