Stella had an MRI today...

August 24, 2004

We started the 1st of a few tests before Stella goes in for the VNS, she had

her MRI today, hubby had to go as I was working she started the morning

off great too, was hungry (a first in a long time) and she couldn't eat

anything after 7am, of course she woke up at 10am. Quite a few seizures the

last couple of days!!! Any way, her whole schedule is thrown off, she spent

about 45mins sleeping after the general anesthesia wore off, she's still

finishing her 1st meal of the day and it's almost 6pm. YIKES!!!

Next is the consult w/ the neuro surgeon to talk about VNS, he will also do

a muscle/skin biopsy to check for mytochondrial disorders (bad spelling).

This weekend I'm volunteering at the E camp for kids here in WA, I'm a

little hesitant to leave STella being in the fragile state she is, hubby

will hopefully manage, i'll make her food for the 3 days i'm gone so that

will all prepared, just a little nervous. Her older sister went last year

and made some wonderful friends who have sibs w/ E so now it's a tradition.

Also, we have a meeting next week with the teacher/assitant/and her personal

aid at school to talk about her seizures. We're adding a few things to her

IEP for security, I'm hoping kindergarden won't stress her out too much, and

that she can focus. Shes is a transitional K class, doing the normal

curriculum but smaller class size and more freedom. I'm in panic mode

because of all her drops/getting hurt/making sure someone is w/ her at all

times etc... and then the food part.

STella has started sniffing everything she cannot eat, we had enchiladas

last night, and she had a keto one, but it was tiny compared to the real

thing, all she wanted to do was sniff my plate, then it was Anisa's birthday

(big sis turned 10) and out came the cake, and poor stella was just sniffing

away. SO SAD... I hate that feeling, especially when we're not getting the

results we so wished we would from the diet. I'm still hanging in for the

6month mark then reassessing at that time if we should continue.

--

-mom to Stella, 5years old, started keto diet May 10th 2004 still

waiting to be seizure free. Also on Lamictal, epam and Diamox. Anisa

is almost 10 and a happy healthy girl.

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