Friday, October 2, 2009

Rough Night

A few hours after my cutesy little post last night, Collin woke us up having seizures. Some were similar to the spasms he's had all along and some were different - longer and with shaking. They made him cry. It had been over a week since we had seen any seizures at all - a timeframe that coincided with starting the B6. I had just started to let myself believe that maybe Collin really did just have a B6 deficiency and we would finally have an answer and a treatment. I didn't get much in the way of sleep.

So, today will be one of those marathon phone call days with the neurologist's office. Dr. Awesome is currently out of the country for two weeks, so we won't be able to rely on his man-of-action-powers. The next medicine we're trying was just made available in the U.S. last month and the paperwork is a long process, but we've been working on it for two weeks. I don't know how long it will take to get it or what we will do in the meanwhile in terms of controlling the seizures.

One thing we will do is focus on Collin. When I get especially anxious or discouraged about our situation, Kyle will hold Collin out to me and say 'Does this look like crisis?' I can think of a lot of things to say back - that that's what makes it so scary, that our whole life feels like a crisis sometimes right now - but usually I just take our son and then take a deep breath.

2 comments:

  1. I can't decide who is a bigger rock star after that post you, Kyle or Collin. I guess that's you make such an amazing team.

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  2. Ditto to Sarah... Hang on to both of those guys!

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