Gillette Appointments / Governor Dayton Update

Luella had three appointments up at Gillette Children's in St Paul on Wednesday. We made a long day out of it and drove up and back the same day. Even though we had gotten more snow on Tuesday, thankfully the roads ended up being pretty good. Luella's first appointment was with Dr. Novacheck, a orthopedic doctor. Dr. Wical wanted Luella to be evaluated since she is somewhat clumsy and she felt Luella was in-toeing a bit. Dr. Novacheck said Luella has some internal tibial torsion in her left leg. Basically her left tibia bone is rotated inward a little bit which causes her foot to turn inwards a little. This condition can improve on its own (or potentially get worse). It's just something we need to watch. Luella is also quite loose in her hips. The doctor was pleased that Luella is getting OT and DAPE services at the school because they can work with her on strengthening and tightening up her hips which will also help in gaining more stability. We will continue with yearly check-ups with Dr. Novacheck.

Luella's appointment with her neurologist, Dr. Wical, went well. Dr. Wical was very pleased with how well Luella is doing. She said the results of the EEG three weeks ago during the sleep study were quite good for a child with Dravet. No major issues! Of course she'd like to see Luella have even fewer seizures as would we.

We also had a follow-up with Dr. Garcia - the sleep specialist. We got a prescription for something we can try giving to Luella in the middle of the night if she is having a long awake time. It's not an every night type medication so we'll see how that works.

We basically moved from one appointment to the next with little downtime so it was a pretty efficient day and we were able to head home by 3:30. On the way home we stopped at a McDonald's with a play area so Luella could move around a bit after sitting so much of the day. She had her supper then was super excited to go play. So got a few runs down the slide before having a tonic clonic (grand mal) seizure right at the entrance of the tubes. I was so glad she wasn't inside!! Being so rigid and heavy and trying to get her out of there would not have been easy! We did have to give one dose of midazolam to stop the seizure. Unfortunately she didn't get to sleep long - when we moved her to the van she woke up and wasn't too happy the last 90 minutes home. Thankfully we had the DVD player!!

We did come home to some good news on our voice mail and email. We received the following email regarding Governor Dayton's position on medical marijuana. This is a step in the right direction!! We ask that you take a quick minute to send him a letter showing your support of medical marijuana in MN. You can use an online form located here to do that: https://secure2.convio.net/mpp/site/Advocacy?pagename=homepage&page=UserAction&id=2169

2014: The year for medical marijuana in Minnesota

Dear Jim and Heather,

Is Gov. Mark Dayton – thankfully – softening his irrational opposition to medical marijuana? It appears as though that might be the case. Yesterday, ECM reported that Gov. Dayton will allow staff to work with patients and advocates on the issue of medical marijuana. He even expressed interest in researching the issue himself. While we still “don’t know where he stands,” according to Heather Azzi, political director for Minnesotans for Compassionate Care, with your help, we can educate the governor’s staff and demonstrate just how ridiculous law enforcement’s “blanket opposition” to medical marijuana really is.

Twenty states and Washington, D.C. all have workable medical marijuana laws protecting seriously ill patients from arrest and prosecution for using medical marijuana with a physician’s recommendation. Why should Minnesotans suffering from cancer, HIV/AIDS, Dravet syndrome, PTSD, ALS, MS, and other enumerated conditions be forced to break the law in order to have a better quality of life? Ask the governor to listen to patients and providers and be skeptical of the “chicken little” opposition with which certain members of law enforcement provide him.

One to two minutes of your time will help give Minnesota the gift of a compassionate law. Please email Gov. Dayton’s office; thank his staff for their time spent on the issue, encourage the governor himself to look compassionately at the issue, and then send this to fellow Minnesotans who support medical marijuana.

Happy holidays!

Robert J. Capecchi
Deputy Director of State Policies
Marijuana Policy Project 

- See more at: http://control.mpp.org/site/MessageViewer?em_id=70561.0&dlv_id=65201#sthash.9UbZpmco.dpuf

A VERY purple November!

We want to thank so many people who helped us in spreading epilepsy awareness in November!! I received lots of pictures of people wearing purple... and also saw many many more that I didn't get pictures of! THANK YOU! This is how we create awareness! This is how we get people to pay attention and realize that epilepsy affects too many people! This is how we will get the cure we are praying for!

I had two wonderful opportunities in November to share a bit about epilepsy and how it has affected our lives. Our local Rotary club had me as a guest speaker one day and as a spin-off of that presentation I was asked to speak to the employees at my husband's company as well. The information was so well received and we were happy to send some donations to the Epilepsy Foundation of MN as a result! Our local grocery store recognized Epilepsy Awareness month by wearing purple ribbons and on Fridays, purple t-shirts!! This was a great way to really get PURPLE out in the eye of the public!!

Our family was featured in two separate newspaper articles as well! We were thrilled with the opportunity to get the word out. I'm not posting the articles on the blog, but if you are interested in reading them, please email me and I will email you a copy.

Luella ended the last week of November with two seizures but still had a pretty good month with only three seizures the entire month!! She has really been doing great! We thank you all for your continued prayers!

Well... I said I wanted pictures of people wearing purple for a special project... here it is! If you are reading this post as an email, you will need to go to the blog to watch the video or click the link below to watch on YouTube. Thanks again to all of you for sharing your pictures with me! I wish I had been able to take pictures of EVERYONE I saw wearing purple all month long... trust me, I noticed!! Your efforts are truly appreciated as well. Thanks for helping us create awareness in November!!

Watch on YouTube here: http://youtu.be/m-IdWMaUi_k

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.

OTHER NEWS
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:
http://youtu.be/Z3IMfIQ_K6U


THANK YOU TO ALL WHO VOTED!!
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/

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!!