"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

Friday, August 31, 2012

We figured it would happen...

...and it did. Luella had a seizure tonight. We've been waiting for it to happen. She's been averaging about a seizure a week all summer but today was day 16. She hasn't gone this long without a seizure since back in May. Thankfully it was short, one dose of midazolam stopped it. We were at Grandpa and Grandma Johnson's, Jim's brother and family are visiting one more time before heading out east again. Luella slept, then woke up and would only eat cheese and Cool Whip for supper! Yum! It's okay... soon she won't be able to eat whatever she wants. We are gearing up for the LGIT diet, still trying to work out sugar-free versions of some of her meds. We also want to get some baseline labs done. Lots to consider....

Also want to ask that you would keep another Dravet family in your prayers tonight. Eleven year old Molly passed away. She was doing remarkably well... and then this happened. You can watch a video of Molly from last spring. What a strong little girl!! We need to FIGHT this Dravet Syndrome!!!

Wednesday, August 22, 2012

Many blessings at the Dravet Conference

I had to give myself a few days to digest all that we heard and saw at the biennial Dravet.org Conference - that, and getting through sending the kids back to school! My baby boy, Ryker is in Kindergarten now!! <sniff, sniff> I'm an emotional momma.

The Dravet Conference was full of blessings! Many little blessings running, walking and getting strolled all around! I think about 200 Dravet families were represented there - they estimated that to be about 10% of the Dravet population. While it was a great blessing to be surrounded by so many people that just "get it", it was also heartbreaking to see some of the kids and hear many of the stories there. We were assured many times by parents of the older more severe children that it doesn't have to be that way. Typically those older kids were diagnosed much later in life and often times got the wrong medication which made things worse.

We got some great information about things we hadn't thought about too much yet - things like school, dealing with grief, making time to care for MYSELF  (yeah, right!), sibling support, the use of medical marijuna to treat seizures, etc...

Cozy in mommy's bed!
Although Luella started out the conference with a seizure, she did great the rest of the time there. Well, except for thinking it was time to play every morning by 4 or 5 am and then finally deciding to go back to sleep at 7 when it should have been time to get up! She kept asking to "snuggle mommy" and we did that a lot. The pack-n-play basically didn't get used. Thankfully she adjusted back to normal after getting home!

Jim's mom, Anita, came with us to the conference to help out with Luella. They had some children's activity rooms set up and she kept on eye on Luella there so Jim and I could attend the sessions.  There were multiple sessions going on all the time so we usually went to different ones and shared info later. After leaving Luella with Grandma for the first time on Thursday afternoon,  I was sitting in a session with Jim (one of the few we went to together) and thinking - this is the first time we had been alone together without Luella!! We've NEVER gone on a date alone since before Luella was born!! It's been almost three years! Anita was willing to be trained to give Luella her seizure rescue med if she had a seizure. We were also just right outside the door if she needed us. It was a strange feeling to not have her with us all the time! I know that's something we need to do more but it's hard for me to leave her...

               Luella taking a snooze on Grandma.            
Visiting the clown and getting a purple balloon animal!
Luella and friend Melanie at the conference.

It was a pretty emotional time. Having to face the idea that Luella might face some developmental delays or have problems with her gait and walking later. Seeing the word SUDEP (Sudden Unexplained Death in EPilepsy) in black and white on my conference agenda. Thinking about long-term planning for Luella. All things I'd rather not think about. Sometimes I feel as though I can handle anything and other times I feel like I'm at the bottom of a pit. I know the only way I can make it though this is by my faith. I'm so glad I can just give God all this "junk" and he will deal with it.

Some new Dravet friends with connections to Luverne!! These are Melanie's parents (Melanie is pictured with Luella above).

Wednesday, August 15, 2012

At the Dravet Conference... a seizure starts things off

We arrived in Minneapolis today for Luella's doctor appointment and the start of the Dravet conference tomorrow. Luella's appointment went well. Dr. W was so happy to see that Luella has finally gained weight!! Luella is doing tremendously well developmentally even though she continues to have about a seizure a week. I have been excited for this conference but also worried about seeing so many other kids who aren't as well off as Luella - I know that will weigh heavy on my heart. Dr W said today that there will probably be many parents of little babies here that will be encouraged to see Luella. I do hope that that Luella can offer some hope to families who are just beginning to deal with Dravet Syndrome.

We checked into the hotel this afternoon and got settled a little before heading out for supper. On the elevator ride down to the lobby Luella had a seizure. It was quickly stopped with a dose of midazolam. She napped awhile and was feeling better after eating supper. We are hoping now that that seizure is out of her system the rest of the week will be great.

Saturday, August 4, 2012

This week: 2 seizures but water fun at home!

Well, we ended a pretty good week with a seizure today at City Park. (Luella had a seizure to start the week too on Sunday.) It was such a nice day to get out. We had RAIN last night and a much cooler day today!! After Luella's nap we ran some errands around town and then stopped by City Park for the kids to play. Luella wanted to be so independent. I tend to stick to her like glue while she climbs on the playground equipment. Luella kept pushing me back and saying "No, mommy. Self." I was pretty impressed with her coordination. She was getting around pretty well without needing my help though I was right there just in case.

After playing for quite awhile I noticed Luella getting a little clumsy. She was stumbling a little and running into things. She had just come down from a slide and I told Jim that I thought she was getting more unbalanced. She was still talking to us and responding just fine, even laughing at times. Then she tripped a couple times and I picked her up and she just started staring off and losing consciousness. Jim gave her one dose of midazolam and she came out of it pretty quickly. She didn't even have a post-ictal nap but was a little dopey for awhile. She was back to her normal goofy self after supper.

During the week we had the little baby pool and slip n' slide out at home a couple of times. We thought we'd try swimming at home on a really hot day. Luella did great! She had so much fun!! I haven't really wanted to get the pool or slip n' slide out again since her seizure on the slip n' slide back in June. This time she wore her sunglasses and would look down at the water reflecting the bright sun and NO SEIZURES! I really think the sunglasses are helping. I was so glad to be able to see her have some normal kid fun without any problems!

Luella and friend Lauren enjoying the water!

We are doing more research into the Low Glycemic Index Treatment for Luella - actually Jim is doing most of the work. I have such an amazing husband!! He has been devoting all of his free-time to Luella and figuring out what is best for her. I'm feeling so much better about making this diet change. I appreciate all of your prayers. I know it'll still be a big adjustment but I want to do what is best for Luella too and if changing her diet helps her to have fewer seizures without adding meds - that would be great!! It'll probably be 2 - 3 weeks before we can start it.

We appreciate all of you who have subscribed to get these updates about Luella and those who read the blog from my facebook updates. We are thankful to have so many caring friends and family!!