All About July

I guess monthly Luella updates have been my thing lately. Summer is keeping me too busy to sit down and write! Luella only had three seizures in July! She had her longest stretch of seizure-free days since May of 2012! She went 17 days!! YAY! And a HUGE YAY for all the fun things she was able to do this month! Look for pictures below.

The seizure she had on July 10th was not a normal seizure and had us wondering if the seizure was done. It was a non-convulsive seizure which makes it difficult to tell when the seizure is done. This seizure was even more strange because her O2 and heart rate were completely normal. We rely on Luella's pulse ox monitor to tell us if she is having a seizure when she is sleeping. Her O2 usually drops and heart rate increases. Not the case this time. It kind of looked like the seizure was done but her eyes were still open - like she was sleeping with her eyes open. I did give her two doses of midazolam and we didn't see any noticeable change. We were torn about taking her to ER; they wouldn't know any better if the seizure was done and may end up giving her more meds unnecessarily. Jim laid his hands on Luella and I put my hands on his and he prayed that God would help us to know if her seizure had stopped or let us know if she was still seizing so we could get her the help she needed. Immediately Luella's pulse ox monitor starting alarming and her oxygen was dropping into the 60s! We knew she was still seizing, so Jim scooped her up and ran to the van to head to the ER. As he was backing out of the garage Luella lifted her head up and turned it from side to side - the seizure had stopped!! We were so glad to avoid a trip to the hospital! This seizure fit the description of non-convulsive status epilepticus (NCSE). These are scary and dangerous seizures since it is so hard to tell if the seizure is done and sometimes they can be very difficult to stop. We pray that we don't see another one of these!!

Luella's latest seizure was on July 27 (ending her 17 day run). We were at our local county fair. The kids were having so much fun on all the rides. I was just getting Luella buckled in on a ride and she started seizing. I was SO thankful the ride hadn't started!! I'm always nervous about letting her do a ride without me but I also don't want to deprive her. Thankfully it was a short seizure and no meds were needed. Luella bounced back so quickly. We spent some time looking at some booths and exhibits and then she was ready to eat supper. After supper she was ready to go and asking for more rides. She already had her balance back and was able to have some more fun!! Another answer to prayers.

Luella has been able to enjoy swimming this summer!!! Last summer almost every attempt at swimming was foiled by a seizure. This year she has been swimming a lot without one seizure! She mostly just swims in a little pool in our backyard and one time a big outdoor pool, but I think she logged over 12 hours of swimming in just a 2 week period! We found that sprinklers aren't good for her - maybe a combination of cold water and all the running around, but she doesn't seem to be able to do a sprinkler without a seizure. We have our pool water ready in advance so the water is warmed up slightly and it works out great! It has really cooled down a lot here. We are hoping to get a few more days of swimming in before the end of the summer.

Luella also had appointments with her neurologist and the neuropsychologist we saw back in April. The neuropscych did some shortened versions of the testing she did last time. She found that Luella is doing about the same. Cognitively she tests at the equivalent of about a 4 1/2 year old (at 3 years 9 months old). Behaviorally, Luella acts more like a 2 year old. Testing her is VERY difficult. Jim didn't stay in for the testing last time but he did this time and he was surprised just how difficult it is to get Luella to answer many of the questions. We see the difficult behavior at home too but when you are trying to get through an hour of testing it is much more visible. ADHD is something we will continue thinking about. Luella's neurologist was very pleased with how Luella was doing - she was 2 weeks seizure-free at the appointment time and finally sleeping better too.  As always we have a list of things we want to try but we take things slow to be sure of the affect on Luella.  Thanks for all your continued prayers.

I'll leave you with a video slideshow of Luella and her siblings enjoying their summer!

Lots of Links

Well the segments about medical marijuana finally aired on NBC last week. The one on the Nightly News was shortened a bit. The one the next day on The Today Show was a little longer and I think did a little better job at giving a positive perspective about kids using medical marijuana. Here are the links if you missed them last week.

The Nightly News with Brian Williams: http://www.nbcnews.com/video/nightly-news/52434789#52434789

The Today Show: http://www.nbcnews.com/health/medical-marijuana-can-help-sick-kids-some-worry-about-risks-6C10506407

A few weeks ago a reporter from Mint Press News contacted Jim for an interview about Luella and our desire to have medical marijuana legalized in Minnesota. They talked to a few other families as well, all have kids with Dravet Syndrome. We Dravet parents are VERY interested in getting access to this potentially life-changing treatment option!! Luella's bit is toward the end of the article.
http://www.mintpressnews.com/worried-parents-weigh-their-childrens-health-against-medical-marijuana-laws/165396/

I would also like to ask you to please sign/send a letter to New Jersey Governor Christie to ask him to pass a bill that would make it much easier for little Vivian to get the medical marijuana she needs! You don't need to live in NJ, anyone can send a letter and it literally takes just 30 seconds!! We met Vivian's mom during the Dravet Conference last summer. http://www.lettersforvivian.org/

A Summary of June / Tune in to watch....

I guess I pretty much let the whole month of June go without a post. I thought I'd give everyone an update on how Luella is doing. I've had lots of people ask about her. I want to let you know how much it means to us that you continue to keep Luella in your thoughts and prayers!!

Luella had five seizures during the month. Two of those seizures required her rescue med to stop. She did have a 9-day and an 11-day run of no seizures mixed in there so that was great! Even more great was that she didn't have any the week Jim was gone for work! I always worry a little more about seizures when he is away.

Luella's latest seizure was last Wednesday. We had taken Burke (our oldest) along with some friends to a pizza/arcade/play place for his birthday party. Luella was excited days in advance to go down the "twirly slide". When we got there Jim hadn't even set her down yet and her feet were running in the air!! Unfortunately she only got about five minutes of play in before she had a seizure. It was a pretty strong seizure and this was one that required midazolam. Toward the end of the seizure Luella somehow sucked her bottom lip into her mouth and she bit down HARD! It's amazing how ridged people can get during a seizure. I knew she'd bite right through her lip if I didn't get it out. I kept trying and finally got it out! She had some big dents in her lip for quite awhile and she did end up biting through the skin a little. I keep thinking of how much worse it could have been. Little Luella ended up sleeping through most of the party. She woke up enough at the end to have a few bites of pizza and some cake. I was so hoping she would make it though the night without a seizure - especially since she had one the night before also.

June did have a few fun things for Luella. Luella enjoyed playing with another little girl with Dravet in our own backyard! We met a family at the Dravet Conference last summer that have relatives in our little town! They were here for a visit early in the month and stopped by one afternoon to play. Melanie and Luella had lots of fun together, despite Luella not feeling the greatest from a cold and Melanie recovering from a seizure earlier in the day.

Luella and Melanie

I also want to mention something you might want to tune into on Monday and Tuesday. There will be a piece with the Realm of Caring and the Jackson family (Zaki) on Monday evening on the NBC Nightly News with Brian Williams and then again on Tuesday morning on The Today Show. Zaki doesn't have Dravet Syndrome but a different form of severe epilepsy. At his worst he was having 200 seizures an hour!! Since he started taking medical marijuana he has not had one seizure!! This is an amazing story, one that needs to be heard so all states will realize the healing power of this amazing plant!

Here's a video about Zaki and Charlotte (a little girl with Dravet) and the success they have had with medical marijuana...

One week = 4 seizures

We wrapped up a busy week last week. We had family visiting from Florida, New Jersey and Colorado! Jim's brother and family, sister and family and his Aunt and Uncle were all here. Most stayed with Jim's parents but a couple of the kids stayed with us a few nights and there was constant activity the whole week! It was so much fun. Jim's parents had all of their grandkids here - all eight! Yes, eight kids 9 and under here on a VERY rainy week! Fortunately we were able to get them outside a few times and managed to keep them busy the days we were stuck inside.

Sadly, all the excitement was a bit much for Luella and she ended up having four seizures in that week. On the plus side we came to realize that we don't always need to rush the midazolam (rescue med). During the second seizure I gave her midazolam and immediately the seizure stopped - too soon for the midazolam to have stopped it. So the next seizure she had we waited a little longer. That seizure stopped on it's own! And the fourth seizure that week was the same - we waited and it stopped! This is great! She bounces back more quickly without the meds and I don't have to worry so much about not catching the seizure right away. Obviously I still won't leave her alone but I've always worried about not getting her meds to her right away because in the past the longer the seizure lasts, the harder it was to stop. She still typically needs a little bit of oxygen to get her through the seizure so we still have to be very alert to that as well. And we don't know if this will always be the case and the seizure will stop on it's own so I do have to be ready with meds. It's just nice thinking that maybe she can come out of these on her own more often now.

Another BIG exciting thing is that Luella was able to swim a week ago Sunday without having a seizure!! And she swam for a LONG time (an hour and a half) in a chilly indoor pool!! We had a surprise birthday lunch for Jim's mom at a new hotel in town and then all the kids went swimming. We were a little concerned because the water felt so cool but Luella couldn't stop talking about going swimming - she was SO excited!! We let her and I was on alert waiting as Jim slowly took her into the water. She was cold at first but then she was smiling and having a blast!! She smiled the entire time! It was so fun to see her enjoying something she loves without having it cut short by a seizure!!

Luella in her NEW swimsuit!

Having so much fun!

These are Luella's handprints. I made some handprint art to include in a memory book for Grandma Johnson. Of course Luella picked purple paint! ...just very fitting since a purple butterfly is the logo for the Dravet Syndrome Foundation.

I also want to mention that our thoughts and prayers continue to be with the Dohman family as little Clover lost her battle with Dravet on May 23, one month before her 4th birthday. Please pray that a cure will be found for this devestating form of epilepsy!