Thursday, May 13, 2010

I knew today wouldn't be 'all warm and fuzzy', waking a peaceful baby at 4 at and depriving her of food are not the makings of an easy day. Nonetheless, we survived the pre-dawn hours and arrived with a sufficiently tired baby. The actual EEG process involves placing electrodes in jelly (not grape) all over Lilah's head and then wrapping it, so that she couldn't pull it off. Also, her arms were tied to her side with a sheet, so she would not interfere with the process. L is the most chill baby, but the girl does not like to be tied up, on four hours sleep, with an empty bellly, and sweat dripping in her eyes from her gauze hat. NOT HAPPY. I did manage to get her to sleep after 20 hysterical minutes .

weaping, wailing, and knashing of teeth and, then.........this.

The really short version of the outcome is that her EEG was clear and we are going to taper off her phenobarbitol over 6 weeks. Her highest chance of a seizure recurrence is in the first 3 months. There is a 40% chance the seizures will reoccur. At which point, after egging her neurologists house in anger, we will resume the medication. I pray this never happens. I also pray that if she were to have a seizure that it would be when I'm with her.

Thank you for all the sweet calls, emails, and texts.:) I have no idea what is going on with the underlined font and I'm too tired to figure it out.

4 comments:

Alexandra Hoover said...

Hoping and praying for miss Lilah! She's such a beautiful baby girl and you are such a wonderful family, none of you deserve the seizures, or anything that little baby girl has to go through. I really hope everything works out ok!!! I'll be thinking of you.

<3 Alex

Cade and Cora said...

Praying for you guys during this med change. I know it's scary, but it's water under the bridge compared to what you've already done. You're an awesome mama and you'll make right choices for her!

林茹宣 said...

enjoy your artical, thank you .............................................

notes of em said...

ok I know this is not what your post was about. but she looks SO dang big! like a 3 year old in that picture.