Happy and Smiley

Cailyn is back to being Happy and Smiley.

This morning she didn't want to wake up after her nap to eat. She really is a sound sleeper but we're not sure if she does have hypoglycemia issues, one thing they are investigating at the geneticists office. So I gave her 10ml of OJ and then got her to wake up enough to drink a formula bottle with 2 oz of pedialyte and she was happy and smiley the rest of the day. I'm thinking along with spiking her drinks with miralax for the constipation maybe I'll slip in 2oz of pedialyte a day and see how that goes. She's still only had one seizure today at 2:45.

I've been going slow with adding food back in to her diet but let her go back on formula for now. That way she can build up her strength and gain back the pound and a half she lost. Plus I'm treating her to the pre-made formula instead of the powder. It's more expensive but the thickness is different and until we were in the hospital again, where she had the pre-made, I wasn't sure she really had a preference.

I signed up for this online seizure tracking web site today and you had to fill out this questionaire. They asked if there was a known cause for the epilepsy, brain tumor, brain injury etc. Well one of the options was electrolyte disturbance. So I looked into this a little but really only found medical journal articles and some of those you have to have a biochemistry degree to understand.

She does seem much better when she has some pedialyte and after she's had IV, even if they say she wasn't dehydrated. One of the possibilities the metabolic folks told us was that the sugar in her blood may not be getting enough into her brain. We're still going round with them on scheduling and coordinating with insurance for her next tests but wouldn't it be interesting if this were the problem. We've always felt her seizures were connected with eating and food. So I finally got them to test for food allergy and low and behold I was right. What if now they find this sugar thing is right too?

Well some answers some time would be nice seeing as it's been a year. Feb. 22 was the anniverary of the first ER trip to Children's hospital. Not really one to celebrate.

This weekend the plan is to go to a scrapbook party since the girl is a year old and I have been a serious slack in getting photos into the book. Then Sunday I need to organize her medical records and update the contact and phone number lists around the house for all the doctors.