"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

Tuesday, December 25, 2012

2 Seizures Christmas Day

Merry Christmas everyone!! Hope you all enjoyed some time with family and friends this Christmas as we celebrate the birth of our Savior!

Luella excited to find a number 3! "It's how old you are" she says!!
Luella's day started out great! Santa brought her an art easel with a drawing board on one side and magnet board on the other. She had so much fun arranging the number and letter magnets. After some time opening gifts at home we went on to SD to be with my side of the family. Luella made it through lunch and opening gifts there and while we were all posing for a family picture she had a seizure. She was calm, hadn't been running or excited... hard to say what triggered it. It had been a week on Sunday since her last seizure so she was "due" I guess. I always worry about those seizures at my parents' farm since there isn't a hospital close by. Thankfully it was quick and stopped with one dose of her rescue med. We headed home after her seizure and she slept the entire way.

At home she was cranky. We still had some gifts to open that we didn't have time for in the morning. She wasn't really in the mood anymore. She headed back to her new art easel and was playing with the magnets again. I couldn't see her face on the other side of the easel but I could see her feet. She was moving around a little then she just stopped. I went and looked right away and she was having another seizure!! :( Poor baby. Again it stopped with one dose of her rescue med. And she slept AGAIN! We continued to open the other gifts while she slept on the floor beside me. I basically woke her up to put her to bed tonight. She slept so much today, I hope she sleeps all night. She has one more gift to open tomorrow - her bigger gift from mommy and daddy. I hope she will be feeling lots better in the morning... I can't wait to see her reaction!

So, not the "perfect" Christmas by a long shot, but I guess I just need to remember how lucky we are. So many other Dravet parents deal with watching their precious children having multiple seizures EVERY day! Or have Dravet kids who aren't even able to open a Christmas gift or play with the toys they are given. We are truly blessed with our Luella!

Please pray as we prepare to start the GAPS diet in January!

Friday, December 21, 2012

Snow FUN!

We thought we'd attempt some outdoor snow fun today with the kids. Jim's been anxious to take the kids sledding since we actually have some snow now. Luella hasn't been out to play since she had a seizure after trying to play in the little bit of snow we got a couple weeks ago. We prayed for seizure-free snow fun and God answered our prayers!! Luella had the best time!! She has never been sledding before - at least not down a big hill and she giggled the whole way down! She had fun sledding, rolling in the snow, making a snow angel and throwing snow balls. I love to see her smiling and being able to do some normal kid things without having things cut short by another seizure! We were able to be outside for a hour and then went home to warm up with some hot chocolate - which Luella thoroughly enjoyed too!

I didn't get a chance to blog on Sunday, but Luella did have a seizure earlier this week on Sunday evening after the kids' Christmas program at church. It had been one week since the last one. Much better than the three the previous week!

We took a bunch of pictures of the kids having fun today... I'll leave you with a few of Luella's fun afternoon! Thank you for all your love and support and all the PRAYERS!!

Ready to head outside!

First sled ride.

SO much fun!

A girl having a lot of fun!

Happy times!

Throwing snowballs!

Warming up with some yummy hot chocolate!

Monday, December 10, 2012

Dravet on CNN

Dravet Syndrome is getting some coverage on major news networks. This is a story about a dad, Jason David, and his son Jayden. We met Jason at the Dravet conference in August.

Sunday, December 9, 2012

3 Seizures Over the Weekend

Luella went just over a week seizure-free but then ended up having two seizures on Saturday - one after breakfast and one in the afternoon while playing outside in the snow. The third one was Sunday night after supper. All three seizures were very short. They seemed to stop almost immediately after giving her midazolam. Saturday was kind of a crummy day for her though. Most of her seizures tend to be in the evening and she can just sleep off the effects of the seizure during the night. On Saturday after her morning seizure she was quite cranky and restless even when being held. After lunch and a nap, she was anxious to play in the snow but after only 10-15 minutes outside she had another seizure. After that second seizure she slept a couple hours and woke up feeling better.

Sunday night's seizure was around 7:00. She had been running and playing with the kids after supper. She fell with that seizure but thankfully didn't bump her head too hard. She slept a little bit and woke up in time to get ready for bed. She went right to sleep at bedtime.

Hopefully the rest of this week can be seizure-free now!! She is really excited about all this snow. Hopefully she won't have a seizure every time she tries to play in it!

Ashlyn and Luella playing outside.

Monday, December 3, 2012

Purple Prayers

I meant to post this on Friday - the last day of November, the last day of Epilepsy Awareness month. Unfortunately, waking up to Luella having a seizure on Friday morning put most of the day's priorities in a different place.

I just really wanted to say thank you for all the PURPLE PRAYERS for Luella and all those with epilepsy - not only in the month of November but the whole year through! Many of you made a special effort to wear purple in November and not just wear purple but to tell others why you were wearing purple. My good friend explained the meaning of purple in November to her boys and told them when they see something purple to say a quick prayer for a cure for epilepsy and Dravet. Things like that warm my heart!!

Our local newspaper ran a story on Luella and our desire for more awareness for epilepsy. I've had older people tell me about relatives who had epilepsy half a century ago and how it was "hush, hush" and nobody talked about it. I truly believe that increasing epilepsy awareness will bring us closer to a cure.

Thanks everyone!!

Luella with her ECFE teachers. They all surprised us by wearing purple on November 1st!
My Bible study group joined together and wore purple too!