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12.24.2010

BACK ON THE DIET.

We started back on the diet. Cole has been awesome...and eating his food like a good little boy. But, I am kinda confussed.

2 WEEKS AGO: before he was sick he had his normal "head nod" seizures (about 25 a day)

1 WEEK AGO: sick and off the diet, he was having 12 "head nod" seizures a day and 1/2 of them were the HORRIBLE "drop" ones...where he ends up on his back or stomach & a goose egg on his head.

THIS WEEK: about 40 "head nods" and a few HORRIBLE "drops" in the morning.

We have an apt with the dr. and dietitian next month (not till the end of course). So we will see. Hopefully his body just needs to get used to it again.
His ketones are only a 2+ on the keto sticks and they should be a 4+.


I'm not going to lie...it's been a hard week...I think because it's Christmas and I want Cole to be excited for toys and santa (no, not the important part of the Christmas...but it still makes me sad). I haven't felt like this since he started having seizures a year and a half ago...and I am desperatly trying to pull my self out of it...but it's hard when you don't know what the future holds for your child. You know that time when your "hanging by a thread" - yup...not so fun :( Not to mention the insurance denied his CGH Microray (genetic testing)...which we are going to appeal...but it makes me sick.
On the bright side, his laugh and smile makes me feel better. He's such a sweet little boy and I am so lucky to have him.

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