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Wednesday, August 12, 2009


My blog has it.

It's not pretty and is making my blog anemic!

Catching up here and inspired by Julie & Julia to give my poor blog more attention. This record of this journey is, after all, something that is more useful to me and more sustainable and relevant than the constant and fleeting banter of Face book.

Ellie is going to be 100% off the Depakote in two weeks. After all the difficulty in trying for months to get into see her Neurologist, as some of you read, I decided to wean her myself. And to do so very slowly. I finally got Ellie into see the Neurologist a couple of weeks ago and he said, "Well if you wanted to wean her you should have told me." I replied, "I tried to tell you and in fact left several messages for you including a faxed letter to that effect." To which he replied saying nothing but taking notes into his computer. He then laid out a plan to get Ellie off the two remaining capsules she was on from the total of 6.

This week she is on a half cap in the morning and a whole cap at night for this week, next week it will be a half and a half, and then the week after only a half cap at night and then the week after he said a half cap every other night and then that's it....

What a difference though. My baby girl is more interested in tasting food, she is brighter, she is more interested in the world outside herself.

I can't wait until she is off it totally and a few months have gone by. I feel strongly her seizures were caused by the cisipride and there has been no sign of any of that activity throughout this process. I am hopeful. I am glad she seems to be feeling better.

My back: I started back boot camp at New England Baptist hospital this week. I am glad. It's good and covers your whole back. They said they usually set a goal for women to lift 40 pounds but my goal is 50. I figure that should cover me for a couple of years with Ellie. My pain level is greatly decreased as the toxic fluid from the disc that leaked out into my body has been absorbed. I have not lifted Ellie off the floor yet but plan to after I get a few weeks of the strengthening from the back boot camp. It's good to learn these muscle building exercises - mostly weight lifting. Like the PT for my knee, I will do them for life. Silver linings.

There's so much more to write about, but I am very sleep deprived at the moment as we had a rough weekend with Ellie putting in a couple of days and one night in the hospital. She is fine now. She got a tummy bug coming home on the plane from Ireland. They thought it was her ventricles... of course. Over eager interns are scary, not all cute and witty like on Gray's Anatomy - just plain scary. Like I said, more to write about.

But we were up till 4am that night, Sunday. And she just called out now and I was up with her three times last night and then had to get up early. Between jet lag and tummy bugs and hospital stays and trying to balance my job and my back recovery as well as all the household stuff I am pretty flat out.

It's one of those times when you have to laugh and take stock like one of my friends does by asking at the end of the day, "Is everyone still breathing? Yes? Well then, it was a good day."


Mamá Terapeuta said...

Hi, Kathryn!!! Good to have you back :)

As you may remember, I also wean my daughter off depakote. We did it very slowly, it took us 10 months, but we got ther.

I must say that the less depakote she had, the more brightfull she was. She is so awake now and SO interested in EVERYTHING!!! Is wonderfull.

The bad side: in the minute the dosis stop beeing therapeutic, she started with insomnia, terrible insomnia. I've hear its not uncommon when you wean depakote, and is has nothing to do with seizures., but ist sucks. Their brain has to learn how to function again :)

Anyway, cant wait to see Elli fully beeing herself! :)

Kathryn said...

See!? This is why I love my blog readers!! THANK YOU! That is exactly what is happening to Ellie. She hasn't slept well in weeks. We are down to a very low dose, way below therapeutic level and she is very restless in her sleep and waking up all the time...ugh. I think it is going to take some time for it all to even out and just like you said for her brain to settle into it's own rhythm

Katy said...

Man, I would love to wean Charlie off his drugs--just to see what he's like without them. Just to have that knowledge, whether he stays that way or not.

I am worried about the insomnia thing, though. We really like our sleep around here and it would be tough.