"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: 
http://www.amazon.com/gp/registry/2O8J00UK8VXNR/ref=cm_sw_em_r_ws_3u2Xpb08RYAC1_wb

Friday, July 27, 2012

A big goose egg

I thought we could enjoy some time outside today since it has finally cooled off. I haven't really wanted Luella out in the extreme heat. We've been going out earlier in the day or later in the evening on the hot, hot days.

Today Luella had to ride her "pink tricycle" and was having lots of fun. After about an hour and a half outside she had a seizure. She was sitting on her tricycle and kind of fell off slow motion. She  happened to be on the sidewalk right in front of our steps and bumped the back of her head hard! She has a big goose egg!! Poor baby. One dose of midazolam stopped the seizure but we gave her some ibuprofen too to help with the headache I'm sure she had due to the seizure AND the fall.

I hate Dravet Syndrome.... :-(

Thursday, July 19, 2012

Seizure at Pipestone Pool

We thought we'd try beating the heat at the Pipestone pool tonight. Luella was decked out in her snazzy polarized sunglasses but barely made it out of the locker room before she had a seizure! She was so excited to go swimming and wanted to bring two little rubber ducks from home to swim too.  She wasn't even wet yet and we were walking in the shade of the umbrella so who knows what happens in her little brain.  It would have been 2 weeks tomorrow since her last seizure.

I sat out of the pool in the shade and held Luella while she slept. Jim, Burke and Ashlyn swam for about an hour (Ryker stayed home and had some special time with Grandpa and Grandma while he recovers from Mono). Just as the pool was closing Luella woke up a little bit and with eyes just barely open she pointed at the water and said "wimming". Poor babe!! The sweet staff at the aquatics center gave us free passes to try it again another time. They were also sad Luella didn't get to swim.

Luella was pretty much back to normal when we got home and she took her two little rubber ducks in the bathtub with her! We'll have to see how it goes the next time....

Monday, July 16, 2012

Sunglasses appear to be helping!!

Well, I didn't get a chance to post about Luella's last seizure on July 6th. We had a lot of family in town helping Jim's parents get settled in after their move. It was so hot!! On that Friday we decided to head to Rock Rapids to the pool with Jim's brother and family. Luella was only in the water about 5 minutes and had a seizure. Boo! I so wanted her to be able to enjoy the time cooling off and playing with her siblings and cousins.

Luella and her new sunglasses!!
We decided to try polarized sunglasses (recommended by other Dravet parents). I ordered a couple of pair just in time for our weekend trip to Okoboji this past weekend. What a great vacation destination for a little girl who seems to have seizures around water and sun!! It was planned though and we had the sunglasses to try and she did GREAT!!!! No seizures at all!!! Prayers answered! Luella kept her sunglasses on perfectly and swam at the lake, the campground indoor pool AND the little kiddie pool outside!! Bright, sunny and FUN!! It was great to see her enjoying herself and laughing. It was wonderful!

We plan to test the waters (HA!) and go back to the pool in Rock Rapids sometime this week to see how she does there too. I've been avoiding pools this summer for fear of seizures but it would be great if the sunglasses would continue working. We know that her Dravet Syndrome will continue changing and eventually the sunglasses might not work, but for now we are going to try to enjoy the water!!! Hope you are all keeping cool!! Let's pray for some rain soon too!


Modeling another style of polarized sunglasses.

Luella having so much fun in the water!






Luella and Ashlyn keeping cool!















Luella enjoying the beach at the lake.








Wednesday, July 4, 2012

"Happy Birthday America"

Luella is having a fun day celebrating the 4th of July! We were glad to hear her wake up so chipper this morning. We put her to bed last night post-ictal after having a seizure around 7:40pm. It was another strange presentation - she was semi-conscience and could respond to me a little bit at the onset but then became unresponsive. We had to give 2 doses of midazolam again. Usually after a seizure she lets out a big sigh and then sleeps but she was making little noises or grunts like she was trying to talk to us afterwards and she was restless in my arms too. I just decided to get her ready for bed and then she was still and slept until 8 this morning. It was a hot day yesterday but she was only outside for about 30 minutes and had been in for 2 hours when she had the seizure. She just keeps us on our toes always ready for the next seizure! We are so thankful that even after having a seizure she bounces back and is Luella again!! I'll leave you with her little birthday wish for America on this Independence Day!! God Bless America!

video

Video: Luella says "Happy Birthday America"