Archives for the month of: July, 2009

Grace’s new medication arrived today from Holland, it’s called Vigabatrin and is not currently available in the US as of yet and the FDA has yet to approve.

We will make dosage increases over the next month.  She starts at 250mg at bedtime for one week, then 250mg twice a day, then 500mg twice a day, and finally 750mg twice a day.  We should know if Vigabatrin is going to work within a month.

I’ve been feeling this come on let’s go anticipation about starting Vigabatrin, but now that it is here and Grace has received her first dosage it’s more of a holy crap what if this doesn’t work feeling.

–kevin

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It’s been awhile since I had a talk with Hoover in the car, lately Kevin has been his driver.  But Monday night we’d gotten home from St. Paul just in time for Kevin to get on an Epilepsy Foundation call and I went to pick up Hoover from the pet hotel where he had been staying.  (He got an excellent report over his stay which is now proudly displayed on our fridge).  I told him that we’d taken his sister to see the epileptologist – and he would have been so proud of her.  She cried through the first part of her EEG and then calmed down – the doctor thought that her EEG still looks a little better.  I told him that I wish I knew how to read EEG’s better.  I told him how she’d walked down the long hallway at the office after the EEG all by herself and how proud of her Kevin and I were.  I told him how disappointed we were that the doctor was so tired after having worked 8 days straight that he didn’t really notice all the wonderful things that Grace is doing, in fact he’d expressed disappointment that her seizure control isn’t better- and he was so focused on that that he didn’t realize she’d walked to him.  He picked her up and she looked at him – she looked him right in the eye – and it struck me that maybe she was trying to tell him something.  He was quiet as he looked at her…. kind of a “responsibility moment”.  It was then that he said he’d agree with Kevin and I and not make any changes right now.  “It seems she’s on the edge of something” he said.  I told Hoover that right now we are just going to let his sister do her thing, and the doctor said that when we become unsatisfied then we’ll look at what comes next.  We meet with him again in October.

As we got home and I stopped the car Hoover jumped down to the driver’s side under my feet to get out of the car.  I admit he checked out the yard first, but then he checked in with Grace, got patted by Kevin and promptly went to sleep.  Such a good listener and such a good dog.

What’s your cup doing?  What’s the grass doing?  What’s the truck doing?  Cousin Nathan following in his father’s footsteps has begun his journey into the world of broadcast journalism.  Nathan will undoubtedly be an investigative journalist.  He may not break Watergate but he will find out who took the last cookie and where Johnny Tractor is hiding.

Nathan is starting to play with Grace.  Since Grace does not “return in play” I think it is difficult for him to understand why she may not respond, but he is incredibly smart, he knows Grace and he wants to be around her without judgement.

–kevin