"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, November 24, 2013

A seizure tonight.... Watch "The Doctors" on Monday ... and various other links

First of all Luella had a seizure tonight - ending a 17 day seizure-free run. We so rarely have that many days between seizures. We were kind of waiting for it to happen... but you just never know when. We took the kids to a movie this afternoon. It happened just before the movie and then she slept and missed all of it... woke up in time for the credits. :-( Such a bummer. We had to give her midazolam to stop this seizure and she chewed up her tongue pretty bad again too.

Charlotte Figi - a little girl from Colorado with Dravet will have a segment on "The Doctors" TV show on Monday. Charlotte was featured in the CNN special "Weed" a couple months ago. She has seen amazing results from using medical marijuana.  http://www.thedoctorstv.com/main/show_page/D6071

And... another great YouTube video with Josh Stanley explaining the special marijuana they grow for Charlotte. This is a GREAT one to watch!! I haven't linked to this one before: http://youtu.be/ciQ4ErmhO7g

If you missed the CNN "Weed" special from a couple months ago, you can watch it on YouTube here:

Dr. Demirci won the $100,000 Bright Futures Prize for his project "Taking Control of Epilepsy"!!! Thank you to all who took the time to vote! http://bwhresearchday.partners.org/the-winner-of-the-100000-bright-futures-prize-is/

Wednesday, November 20, 2013

Sleep Study / EEG

Luella has had poor sleep since last spring. She can be awake anywhere from 1 to 6 hours during the night. She averages about 2 hours awake each night and we decided it was time to see a sleep specialist. We arrived at Gillette Children's on Tuesday night around 6:30. It was fun to get there after dark and see all the Christmas lights. Luella thought they were so pretty! We got all checked in and they took us down to the sleep lab area. Luella had a nice cozy little room and everything was done right in there - hooking up all the wires, etc... Cindy and Lili got to work and started getting Luella all hooked up. Luella didn't really mind until things started getting stuck on her neck and face. I had to try and keep her hands down so she didn't start peeling things off. Mostly she was very content watching TV while the nurses did their thing. It was really nice that they didn't have to glue the leads on for the EEG. They used a special paste but not actually a glue - it was a breeze to take off the next morning and super easy to wash out!

Lots of wires!
After getting all hooked up we had a little time before getting settled into bed. When it was time, Luella was given some melatonin to help get her sleepy. We read a few books and I felt a little girl getting very relaxed. We had her laying down by 9:15. Only one of us could stay in the room with her since it was a small room. Jim decided he should stay with her since Luella would be more inclined to want me if I was right there beside her. I said my goodnights and headed to my room. At 10:00 Jim sent me a message saying Luella was still awake! :( I was hoping she was going to be right out when I left. Fortunately after one more trip to the potty she did settle down and was asleep by 10:15.

We both suspected that Luella would not sleep well being all hooked up to 30 some wires but she surprised us by having one her best nights of sleep... EVER! We use a sleep app on a smart phone at home to measure the percentage of Luella's deep sleep each night. At home she averages less than 40%. Last night during the sleep study it was at 82%!! What a little stinker! We have NEVER seen anything higher than 50%. Luella did have one brief awake time around 4:30 and then they came in to end the sleep study at 6:00. Luella was very happy to get all of the wires unhooked! It was so easy to wash her hair. She loved that I could lower the shower to just her height! She didn't want to get out! :-)

While it was unfortunate that the doctor could not see Luella's normal sleep pattern, we had a nice conversation with him and he has a great plan for helping us get Luella sleeping better. It was nice seeing a sleep specialist at Gillette since he has seen several Dravet patients and knows what we are dealing with. He was even a speaker at the Dravet conference four years ago!

The EEG portion of Luella's study will be reviewed by her neurologist and we will talk about it in a few weeks when we go back for a routine neurology appointment. We will also see an orthopedic doctor then and check back with the sleep specialist too.

Thanks for all your thoughts and prayers. I think all those prayers made Luella sleep too well!! Maybe we need to ask for those prayers EVERY night!! :-)

Below are a few more pictures...

Getting things started.

Adding more leads for the EEG.

Wires from head to toes!

All ready for bed!

Tucked in and ready for sleep!

Not thrilled with a 6am wake up call but not complaining since all the "stuff" was coming off!

Some wild hair!

So glad to be free of all the wires!

Celebrating with a donut with sprinkles!!

Saturday, November 9, 2013

How to follow?

I know we have some new people checking out Luella's blog and I wanted to post a quick tip to help you stay connected. Of course you can always check in on the blog at your convenience to see if there's been an update, but you can also read the blog in your RSS reader or subscribe to receive email updates if you don't use a reader.

On the right side of Luella's blog you'll find sections to "Subscribe to Little Luella" or "Follow by Email". Just click the link to add Little Luella to your RSS reader or enter your email address in the box and each post will automatically be emailed to you. You can cancel at any time. If you choose to follow by email you will have to confirm the first email sent to you before you will be added.

Thanks for staying connected to us and following Luella's journey!

Monday, November 4, 2013

Shop AmazonSmile and Help Dravet

I know many of you are shopping online these days and probably a lot of you shop at Amazon.com. With Christmas right around the corner, you can take 30 seconds to help raise money for Dravet syndrome and it won't cost you anything!!

Amazon has just rolled out a new initiative called AmazonSmile! Amazon will automatically donate 0.5 percent of all eligible purchases to a U.S. charity of your choosing. All you need to do is go to smile.amazon.com and select your charity. I would personally recommend Dravet Syndrome Foundation, Inc. :-) That's it!! Just be sure to go to smile.amazon.com every time you want to shop on Amazon and you shop just like normal. If you happen to go to amazon.com instead the charity will not receive the percentage.

Super easy! Super fast! Thanks everyone! Dravet needs more funding to help us get a cure!
Luella is waiting...

...waiting on a CURE!

Friday, November 1, 2013

Cast Your Vote

Please vote for Dr. UTKAN DEMIRCI, PHD and his project "TAKING CONTROL OF EPILEPSY: Designing a lab-on-a-chip" You only can VOTE ONCE - it's not a vote everyday type thing - and they only need a little bit of your info. Voting ends November 21. Please take a minute and vote. The winner receives $100,000 for their project.