"The Lord himself goes before you and will be with you; he will never leave you nor forsake you.
   Do not be afraid; do not be discouraged.”
Deuteronomy 31:8

Thursday, October 27, 2011

Our Seizure-Free Run Ended Today

Our 10 week run with out seizures ended this afternoon (Thursday). Luella was playing with Grandma Johnson and she just collapsed. She had the labored breathing, slightly blotchy skin, and little eye twitches. We tried the new rescue med we've had for awhile (midazolam). We give it intra-nasally - as a mist up her nose. It really didn't seem to bring her out of it so Jim rushed her to the ER. I couldn't lift her since I'm still recovering from gallbladder surgery. My father-in-law brought me to the ER after I had a chance to get shoes on, etc... When I arrived Luella's seizure had stopped. They didn't give her anything more in the ER. It took about 10 minutes for the midazolam to work. They did do a quick strep test and a urine test to see if she had a UTI. Everything came back fine so we were able to leave within an hour. After supper tonight Luella was already back to her normal, goofy self!

Luella is teething and has been having slight fevers off and on for the past week. We had also been trying to cut back on her meds to eliminate some of the side effects she has. We are now going back up to the full dose and hope to avoid any more seizures.

In the past a seizure like this would have likely gone to status (unstoppable) and she would have been air lifted to Sanford Children's. I know the stiripentol is helping Luella and we hope we can go another 10 weeks (or more) without a seizure!

In positive news... Luella turned TWO last Friday. She had her "Owl" birthday party on Sunday and had such a fun day. She was in such a happy, good mood. It was so fun to see her enjoying herself. Here are a few pictures from her party.

Luella and her Owl cake (made by mommy).

Make a wish birthday girl!

Luella loved the card we got for her - It sings "Happy Birthday to you..."
Daddy is SO proud! He had to get her this purple light saber!

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