"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

Monday, June 4, 2012

Seizure today beat me to my good news post

Once again, I was just planning on writing a "good news" post but then Luella had another seizure today. :-( Only 2 weeks since the last one.

Cosmic Bowling
Luella has been doing really well. She has been so happy, sleeping better and having lots of fun. Over Memorial weekend we went to southern Nebraska to visit Jim's grandma. The kids always love visiting their Great Grandma. She will be 96 at the end of the month and she is still in her own home! Pretty amazing lady! Luella had so much fun playing with Great Grandma, they made a little game of tossing a little baby doll back and forth and Luella would just shriek with laughter! During our trip we took the kids bowling. It happened to be Comic bowling with black lights and disco balls. LOTS of visual stimulation and Luella did just fine. She even beat daddy's score (daddy was helping though)!! She was very adamant about using the 15 lb PURPLE ball!

We also took the kids swimming at the hotel pool (indoors). Luella had a blast - no seizures. This pool was rather dark compared to the pool here where she had seizures the last 2 times we visited.

Jim was curious how Luella would handle the indoor pool here again so on Saturday we took her. Burke (Luella's oldest brother) didn't think it was a good idea to take her but Ashlyn (Luella's sister) said "Luella will be fine". I asked her how she knew and she said "I don't know, but I know she won't have a seizure." We started out just out of the water having her look at the lights and she was fine. Then Jim took her in the baby pool, still fine and having a great time. He took her in the big pool for awhile too and she did fine the whole time!! Ashlyn knew! :-)

Luella knows how to keep from getting wet!
Today I let the kids play in the water in the backyard for awhile. Luella was having so much fun but just before we were going to go in, Luella was standing in the water at the end of the slip-n-slide looking down. There was a puddle of water and it was right in the sun, so it was reflecting quite a bit. I noticed her staring down then she stepped sideways and was having trouble standing and I was right there to catch her.

This seizure took a little longer to stop with the midazolam. I was just about ready to give a second dose and the seizure stopped. She continued to have some trouble keeping her O2 levels up so we gave her some oxygen for a couple minutes. After that she was fine and slept about an hour. She wasn't too happy when she woke up. Daddy snuggled with her and watched a little Elmo's World and after eating and a little more TV, she was busy "cooking" in her little kitchen and pretty much back to normal.

We are looking into starting Luella on the Low Glycemic Index Treatment (LGIT). It's a dietary approach to seizure management similar to the Ketogenic Diet only this diet is MUCH easier to start and follow. Many people with dibeates follow this diet and it's been proven to help other health conditions also. Luella has okay seizure control right now but we'd like to make it better and we hate to keep pumping her with drugs. We don't know what the long term effect of all of these drugs will be. We've heard some great things about this diet. I'm not sure when we'll start but I'm pretty sure we will be doing it. We have a phone conference lined up with a dietician from Gillette Children's (in St Paul) next week to learn more about it. If you'd like to read more about the diet check out this website http://glycemicindex.com/.

Once again, we appreciate your prayers for Luella. I don't know where we'd be without prayers!

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