Saturday, April 16, 2011


So....the news on surgery front is more pieces to place into the puzzle.
R's case was presented at rounds and the feedback is that a SPECT needs to take place. Which I was really hoping to avoid. Not sure how it will unfold and will not find out more until May 4th as that is our next appt with Dr. B...he is on vacation at the moment.

This week we met the Child Life Specialist who will be helping R with his hospital visits. Desensitizing in regards to care around his face and head. Uh yeah (as R says to me) cause putting lotion on his face, washing it, etc is likened to sticking hot pokers in his eyes. That fun!

We ran into the EEG Tech in the hallway Miss S. While chatting with Miss S R reminded her that "I cried and said your butts getting bigger."

Silly boy.

It was old home day at the hospital as we then we bumped into our neuro nurse....twice...and the other Child Life Specialist, Miss whom R hissed at. Yup! Pretends to be Kevin from UP when he's feeling scared and shy. Friendly child or snipe that I am raising.

So who knows what's happening next. I'm unsure. It's all up in the air and I still don't want any of it. R had one "wiggly hand" tonight, and that's the first seizure he's had in days. Wuhoo! Maybe all this talk of surgery is an over reaction? How do we know? So much of these decisions are based on possibilities and probabilities...maybes...which is why B and I refer to TS as the Maybe Disease. Maybe....maybe not.

I still prefer that surgery and further tests not be in Bup's future. *sigh*


  1. I was wondering when you'd find out some more information. I was going to call but thought I'd leave you alone while B was home.
    Hope all is going well. I'll check in soon.

  2. Call anytime Melinda!
    B's back at work. Time flies....

  3. "I cried and said your butts getting bigger."

    ...that line puts him in the running to be as hilarious as Bristel!


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