"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

Sunday, July 29, 2012

Another seizure at the pool / Donate a toy!

We tried to take another family trip to the pool tonight. Luella lasted about 10 minutes. Long enough to take a ride down the water slide with mommy. We were next in line to go down the slide a second time and she started seizing. I had to run all the way down the steps, flag Jim who was in the water with the other kids and get to the other side of the pool to the rescue drugs. It took just one dose but then she slept for over an hour while I just held her and watched Jim and the other kids. So much for a fun night of swimming. :( I feel so bad for her because she just loves the water.

It wasn't bright, but she did have her sunglasses on anyway. She was shivering as we waited for the slide. Some Dravet kids have a hard time regulating their body temperature. It's just hard to know for sure what happens to Luella.

We've been doing some serious looking into the Low Glycemic Index Treatment (LGIT) for Luella. We will be traveling to the Dravet Conference in St. Paul mid-August, but after that we hope to get Luella started on the diet and hopefully get these seizures under control without increasing meds and having all the negative side affects. I'm really not super excited about the diet - I hope it will be good for Luella but it also means no more sweets and many other things she likes and therefore no more for the other kids too since it wouldn't be fair to eat in front of Luella. Burke and I spent some time at Barnes and Noble today and I found a few cookbooks.  I need to find some things that will work for Luella. It's not as simple as just eating low glycemic foods because we also need to count carbs. Luella will be limited to only 60g of carbs a day and eventually maybe only 40g. I just need to keep praying about it and hope that it will be okay. It will mean changing our eating habits and it's kind of stressing me out. I would really appreciate your prayers about the diet and also prayers that Luella could be seizure free and be able to enjoy playing outside and swimming.

                                 Donate a Toy!                                

Product ImageThe Dravet Conference I mentioned earlier is in St. Paul this year. They hold the conference every 2 years in various places and we are fortunate that it's not so far away this time. They have some rooms set aside where the kids can play. They are asking for people to make toy donations to stock the rooms. There is an Amazon Wish List available with many toys that you can have shipped to the conference. After the conference the toys will be donated to area hospitals. If you'd like to make a donation of a toy or two for the kids attending the conference you can visit the Amazon Wish List and place an order. Thank you so much!!!
Amazon Wish List link: 

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