Oh, and while I'm complaining, I should also add my husband's truck was STOLEN out of our driveway early Tuesday morning. Apparently there has been a large number of trucks stolen in our town. They never turn back up. We were told it's probably already been stripped and in Mexico somewhere by now. They've put together a task force, but it doesn't seem to be working...Anyway, that resulted in a very bad day yesterday.
We did go to the Neurologist yesterday. It was our very best visit yet. He thinks Kendall is doing awesome, and isn't even sure if what we are seeing weekly are seizures. They may just be myoclonic jerks that don't let up. We plan to take another video and send it to him. Of course, based on her previous EEG's, we will never be in the clear when it comes to seizures. We get that, but definitely welcomed some good news. She showed off pretty good in his office too, despite being covered in hives.
I attended a meeting at Cook Children's Hospital last week for a Family Advisory Council that I may (or may not!) be a part of. While there, a child life specialist I was talking to shared with me a few cool things I wish I had known about sooner. Both are great resources for families of chronically ill, or disabled children. They would be great for ECI, therapists, and teachers to forward to their patient families as well...
The first is offered at our hospital and Kamden is attending this weekend. He's read about them before, in the book "Views From our Shoes" but we were unable to locate a local group. I think this is new to the hospital, and we were very fortunate to have someone pass it on to us...
The second thing is Texas Parent to Parent. They offer respite care and education to families in Texas. The back story is pretty cool, and they offer a ton of parent support. Check out the website if you're interested:
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