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!!

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!

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!

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.

 http://bwhresearchday.partners.org/bff/

Happy Halloween!

Halloween and Trick or Treating went great!

Yay!

Here's our beautiful "Belle"!

Purple November / October Wrap Up

First I want to remind you all to wear your purple in November for Epilepsy Awareness Month. We'd like to turn the world purple for the month of November!

So far this month Luella has had four seizures - two of those just in the last week! I'm hoping we can finish out the month seizure-free. There will be lots of excitement on Halloween... so we'll see.

Thankfully Luella was able to celebrate turning FOUR without a seizure to get in the way!! She has been so excited for her birthday and we were thankful for answered prayers for a fun day. Awhile ago I asked Luella what kind of birthday cake she wanted. I was getting myself prepared to make her a Belle cake since she is so into Princess Belle, but she wanted a "rubber ducky cake". She had a pink ducky cake for her first birthday so I really didn't want to do that again. I decided to incorporate the rubber ducky into a different fun cake. She loved it. When I showed her the fondant duck I sculpted she whispered "I want to eat it!!" And she did... at the party and we only let her eat the head then we cut her off... just a bit too much sugar!! It was great to have family and special friends here to help her celebrate. Hard to believe our "baby" is four! She is already announcing that "after four I be five"!! Let's hang onto four for a little bit Luella!!

Luella's 4th Birthday

Making a wish!

The beak is gone!!

Opening gifts.

Luella was also excited to get to see Sesame Street Live this month! She loved seeing Elmo and all the Sesame Street Friends!! It was a special outing with just mommy and daddy!

Remember PURPLE NOVEMBER!! Thanks everyone!!

Test Results

Thank you everyone for your prayers today! Luella handled her procedure today really well! There definitely were some tears but it was nothing like the last time! The test showed that there still is some reflux on left side but it has improved. The doctor felt that Luella is doing so well that there really shouldn't be a need to repeat this test again unless she starts having more problems with UTIs or bladder issues. She's been off of her daily antibiotic for 10 months and in that time she has not had a UTI and we hope that continues! She will have an ultrasound of her kidneys in about 6 months to see how her kidneys look and hopefully after that we'll get the all clear! :-) Luella was very glad to be heading home today! I couldn't help but take some pictures today - she was being just too cute! I thought I'd share with you. Thanks again for all your prayers!

Child Life brought in some dolls to pass the time while we waited for them to put in the catheter. Luella was excited to find a Cinderella and a Snow White.   ... a little disappointed there was no Belle though.

We passed a little more time by playing hide and seek. Isn't this just the cutest little "hider"!?!?

Luella all strapped and "sandwiched" in place for the test.

Luella was excited to find an Elmo drawing board in the room while waiting to see the doctor for the test results. She drew "Elmo with big teeth"!!

After the test and appointment we finally had lunch. Luella celebrated with her own tiny can of apple juice. She thought it was so fun! Cheers! :-)

September Wrap Up

I have been doing monthly updates lately but here we are well into October and I'm behind!! September was a fun and busy month and pretty good seizure-wise also. Luella only had three seizures in September and they all resolved on their own without the need of her rescue med! We were fortunate to have a couple longer seizure-free runs in September - one 11 days and one 15 days! I can't say that we feel free to go anywhere or do anything with Luella - there is always that thought of when the next seizure will happen - but it is less stressful on our entire family when we can go out as a family and enjoy spending some time together without Luella having a seizure! I have gotten a little out of my own comfort zone and have done some things I probably wouldn't have done with Luella in the past. We walked though a corn maze as a family and Luella and I took an hour long bus trip to a pumpkin patch! September was a lot of fun!

Luella started ECFE (Early Childhood Family Education) again. She is so excited to be back at school. ECFE is just once a week for 1 1/2 hours and I am there with her most of the time - the parents do separate for a short time to the next room so she gets her time at school without mommy too! :-) A MOPS (Mothers of PreSchoolers) group has started in our area so Luella and I have been going to that as well once a month. Grandma Johnson goes with Luella to help keep an eye on her. It's so fun to see Luella get excited about going out and watching her play and interact with other children (besides her siblings).

I would like to ask that you keep Luella in your prayers this week as she goes to our local Children's Hospital on Tuesday for a procedure to see how her bladder reflux is doing. Luella has vesicoureteral reflux (VUR) - something we've known about since her first few seizures were triggered by UTIs. She was tested then and diagnosed with VUR. Bascially Luella's urine backflows to her kidneys which can cause frequent infections. On Tuesday she will have a nuclear scan done to see if things are improving. She will have to have a catheter and a radioactive tracer will be injected into her bladder and then they can watch to see where the tracer goes. The last time Luella had this done there was some improvement on the right side so we are hoping to see that on the left side this time. Typically children outgrow this type of reflux but if they don't surgery may be required. This is not a pleasant test. Luella screamed the entire time last time she had this done. That was in May of 2012 so I'm hoping that since she is a little older I can better prepare her for it and it won't be so bad. Please say a prayer that things go well for her!

Also I wanted to give you all a heads up that November is Epilepsy Awareness month! Get out your purple and wear it as often as you can!

Below is a short video slideshow of some pictures from September.

6 Seizures in August

I've had a few people ask - hoping - that Luella had a good month without many seizures. We have had a TON of fun this month but unfortunately Luella ended up having 6 seizures this month. The last one, yesterday, landed her in the ER. She had gone down for a nap and within about 20 minutes her pulse-ox started alarming. I quickly ran in and found her unresponsive, staring off, drooling and her O2 down to 70%. I'm sure she had been seizing for awhile already before her O2 dropped and the alarm sounded - she had quite a pool of drool already. I had been listening to her baby monitor since she laid down and didn't hear a thing! I'm so thankful that her O2 did drop so I knew she needed help! Two doses of midazolam didn't do anything. I was on the phone with Jim and Luella almost stopped breathing. She was breathing very little and her O2 dropped again. I gave her one more dose and put the oxygen mask on. Jim came home immediately and we rushed her to the ER. After that third dose she did cough and closed her eyes so we were pretty sure the seizure was done but she needed to be in the hospital after that much midazolam. We wanted to be there if anything else happened too. She slept peacefully there for a couple hours and woke up in a much better mood then I anticipated. We were able to come  home and she just wanted to be held and kept complaining of a headache. By supper time she was doing better and the headache was gone. This seizure was probably 20 or more minutes long. I can't help but think about all the recent Dravet kiddos that have had that "one big seizure" that changes everything. I'm so thankful that God allowed Luella to come out of this one without any problems!

Despite having the 6 seizures this month Luella has had so much fun! We took a family vacation to a Christian Family Camp only about 2 hours from where we live. We were there four days and had the best time! Luella did have one seizure there right when we got there but the rest of the time was seizure-free! Luella got to ride a horse, go swimming, ride a pontoon boat and had a BLAST spending time with the camp counselors so Jim and I could have some time too! That's right we actually got to have a "date" at the camp!! Such a fun and special time for our family. The staff there were always willing to help out with Luella so we could enjoy time playing with the other kids too without one of us always on Luella duty! Luella got to paint and do so many fun things, she LOVED it!

Burke, Ryker, Luella and Ashlyn

Date time!

After a quick pit-stop at home after Family Camp we headed down to southern Nebraska to where Jim's grandma lived (she passed away last November). We helped with loading some things at the house. On the way we stopped in Hastings for Kool-Aid Days! Kool-Aid was invented there! It was a lot of fun and maybe too much for Luella since she ended up having another seizure there as well. We were glad she had some fun before that!

Luella got to enjoy some fun in our backyard sharing her little pool with our little neighbor girl! Yes, it has gotten H-O-T here! They had so much fun baking their mommies "cakes" and lots of other yummy things! Later when the older siblings came home the water guns came out and it was a war zone! All that running and excitement along with the cooler water in the guns resulted in another seizure. Once again, thankful for the fun she had earlier!! She even got ice cream from the ice cream truck right in front of our house!

Luella is excited to be back at school - going to speech so far, others things will be added in eventually as well. She just loves to be at school! When I told her the first day of speech was coming she told me I could help her put her backpack on and she would go to school and I would stay home! Little stinker! I don't sense any fear of being away from mommy!! I actually go with her to speech and stay there, leaving her at school will come much too soon for me! I can't even think about that right now! Oh boy..... <sniff>

So along with a few other seizures here and there, we had a very busy month! We are SO THANKFUL that even though Luella has these awful seizures, she continues to do so well! She bounces back and we once again have our Luella again. My heart breaks for those families whose children don't come back from "that one" seizure. Our Dravet community is currently grieving for another little angel. We pray for that family and several others that are dealing with some devastating circumstances right now. I just hold Luella tighter and pray more fervently that God will protect her... but HIS will be done! Thank you for your prayers and support!

CNN Marijuana Special

CNN will be airing a special on marijuana on Sunday at 7pm (central). The story features a Dravet family from Colorado.

http://cnnpressroom.blogs.cnn.com/2013/08/05/weed-drsanjaygupta-reports-premieres-on-cnn-sunday-august-11-at-8-pm-et/

If you'd like to read more about the Figi family, they have a story here as well - http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/index.html?sr=sharebar_facebook

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!

Sadness and then a wake up seizure

I went to bed last night in anguish thinking of poor sweet Clover and her family. The Dohman family received really heartbreaking news yesterday. Clover's EEG showed no brain activity and her brain has swollen to the point that surgery isn't an option. Patty posted last night - "Tomorrow we will surround Clover with love from her big brother and entire family." Clover's situation hits us close to home. Clover is also from Minnesota and goes to the same hospital as Luella. Clover's parents were at the Dravet conference we went to last summer. Clover had been doing so well up until December. She had gone over a year without having a seizure! In November Clover and her family were able to take a Make-A-Wish trip to Disney World and no doubt captured many memories that will remain with them a lifetime! Please pray for the Dohman family.  http://www.caringbridge.org/visit/cloverdohman

It is just a very real and scary reminder that things can change in an instant with these precious children! We are fighting a battle for Luella everyday and praying that God will protect her!

So, going to bed, feeling sad and then getting up this morning only to hear Luella's monitor alarming less than five minutes later... and finding her oxygen dropped into the 50s... that's how my day started. Thankfully the seizure basically stopped by the time I lifted her out of the crib and got her to the floor. She did need a bit of oxygen. Then I just held her. I wish I could just hold her all day. And never let go...

Prayers for Clover

I have been having a sad day today thinking about another little Dravet girl. Clover is about four months older than Luella and has been having a very difficult time over the past week. She has had many many seizures and a particularly long one also. Basically they are unable to get the seizures to stop even though she is so full of drugs at the moment. Her mom posted on our Dravet Support Group that Clover's MRI showed extensive brain damage and they don't even know if she will be able to breathe on her own when she wakes up. I'm asking all of you to pray for God to work a miracle in Clover and heal her little body. Her family is at a loss right now and needs our prayers.

Dravet Syndrome is such an ugly thing. Even given the best care possible, Dravet can take a turn for the worse and sometimes there is nothing you can do.

Clover has a CaringBridge site if you are interested in reading more details - http://www.caringbridge.org/visit/cloverdohman.

Jim's Medical Marijuana Post / Hot Day + Water = Seizure

As many of you know I (Heather) write these blog entries. Jim has little editorial control over what I post - he usually helps me proofread but he doesn't ever get to write what's on HIS mind. I thought it would only be fair for me to post an entry on his behalf. I'd also like to say that I could not ride this rollercoaster that is Luella's life without the love of MY life! Jim tirelessly researches new treatment options as well as stays up while Luella has her restless nights - which have been many lately - ready to comfort her when she calls. This allows me to get up early with the other kids and to be able to function during the day. I don't know how he survives on the amount of sleep he gets!

One quick Luella update before I turn this post over to Jim. She had another seizure last night. Jim was home alone with the kids and they were begging him to let them run through our sprinkler. Of course Luella wanted to join in too. He thought a few runs by the sprinkler would be ok, unfortunately he was wrong. Although Luella didn't get that wet and only played by the sprinkler a few minutes, that cool water was enough to send her into a seizure. As usual, a spray of midazolam quickly stopped the seizure. Hopefully we can get better seizure control before the summer swimming season is over.... she LOVES the water! I also hate to avoid the water because the other kids all love to swim too and it's not fair to them.

The words below are all Jim’s, but I do agree that this is a treatment option that I’d like to have available for Luella.

Jim's post:

Medical Marijuana is the most promising treatment option for Dravet Syndrome currently available. Except of course it isn't available everywhere, including MN. However there are bills introduced (http://www.startribune.com/politics/statelocal/205902971.html) that would make it legal here. With the majority of Minnesotans and legislators supporting medical marijuana you think passing this legislation would be easy, but unfortunately Gov Dayton isn't on board yet. Hopefully he’ll see the light soon if enough of us stand up for the rights of chronically ill patients like Luella.

The medical marijuana that helps Dravet Syndrome patients is the nonpsychoactive form (CBD), so there’s no risk of getting high. It’s just another plain old boring oral medication (drops) that you use like any other drug. The biggest difference that it’s more effective and it works without the devastating negative side effects that most of the Dravet drugs have.

Of course there’s no guarantee that medical marijuana would be Luella’s miracle drug, but if you watched her have just one seizure you’d probably agree that it seems unusually cruel to deny her what is probably her best shot at a normal life. When it comes to Luella treatments I’m pro-anything that has a good chance of helping her. I want all the options available. Medical marijuana should be one of those options we could try.

We are fortunate that Luella is currently doing relatively well. But what if her current drugs stop working? What if her condition suddenly deteriorates (which is not uncommon in Dravet Syndrome)? If that happens we won’t have years to start the legislative process. Medical marijuana legislation needs to move forward now, so that we have half a chance of getting access to medical marijuana when we really need it.

If you’ve got a spare hour this interesting PBS documentary looks at the pros and cons of medical marijuana from a scientific point of view: http://watch.montanapbs.org/video/1825223761/

This is one of many Dravet specific medical marijuana success stories. It’d be nice if Luella could go to the pool without a high risk of having a seizure: http://www.cnn.com/2012/12/10/health/medical-marijuana-child

NeuroPsych Evaluation

I should have written an update a while ago about Luella's appointment with the neuropsychologist. Things have been busy with school wrapping up for the kids (they will be done this Thursday!) and Jim gone again for work last week. I'll start out by letting you know that Luella has had three seizures since my last post. I was blogging after every seizure but since she seems to be having about a seizure a week - I don't always have time. Then, what do I say, but that she had another seizure? So you probably won't hear about EVERY seizure... just when I feel like there is something more to share.

Luella's seizure a week ago shows just how important it is that someone is ALWAYS watching her. She had been playing around Jim and the kids in the living room then went to the playroom to play. I was in the kitchen (just the next room over), but was making supper and couldn't be in the same room with her. I was talking with her a little bit to know that she was okay. I asked Jim if he could keep an eye on her since I couldn't be in there. I asked Luella if she was okay - something I ask her several times a day - and she replied "yes, I'm okay". She was quiet again for a few seconds (maybe 30 seconds total) before Jim got there. When he went in the room she was laying face down in the blocks having a seizure! This is my biggest fear and why I feel like I can't leave her for even just a few minutes. I have to be able to hear her talking, singing or playing to leave her - and then I'm still very close by. Seizures get harder to stop if they are allowed to go too long. I did not hear a crash so she must have went down slowly. And thankfully I know it hadn't been more than 30 seconds before Jim found her seizing. She got her meds right away and the seizure stopped. It just drives home the point that she can not be alone.

Backing up to a couple weeks ago when Luella met with the neuropsychologist... The day went well despite Luella have a seizure the night before! We got up EARLY! Thankfully Luella did sleep a bit on the way. We had most of the day allotted for testing but Luella did so great - she got her testing done in the morning and we spent a little bit of the afternoon talking with the doctor. Luella's testing gave her an IQ of 94 (the normal range is 90 - 109) and showed her academically at a four year old age level (she is currently 3 1/2). Those results were great! It was very apparent during the testing that Luella is QUITE active. She could not sit still and it was hard at times to get her to focus. The doctor feels that Luella does have ADHD. Normally a doctor would not recommend medicating such a young child with ADHD but she feels that Luella would benefit from calming her brain to make it easier for her to learn and function. We'll be seeing Luella's neurologist in July and talking with her about the possibility of ADHD meds then.

We appreciate your continued prayers for Luella. We wish we could say no news is good news going forward, but I just don't have time to write about every seizure. Please pray for Luella and all those with Dravet Syndrome. We pray for healing, a cure or a more effective treatment! Thank you.

Seizure Free Run Ended Tonight

Unfortunately Luella didn't make it past the 9 day mark. She had a seizure tonight as we left Grandpa and Grandma Johnson's church supper. I had just buckled her in her car seat and Jim turned out of the parking lot. I heard Luella make a gasping sound and turned around to see her having a seizure. :( I believe this was the first time she's ever had a seizure while in her car seat. Thankfully it stopped quickly with one dose of midazolam and I held the oxygen on her while Jim drove home. She slept for quite awhile then woke up, got ready for bed, read two books and back to sleep! She is such a little trooper through all of this!

More Rescheduling

Thanks to all the snow we've been getting we had to reschedule Luella's neuropsych evaluation for the second time! Who would have thought we'd have issues with snow and ice in April!? As it began to sleet and snow Monday morning I got a hold of Jim who was still in New Jersey for work and we decided not to risk it and reschedule. We weren't even sure if and when he would make it home Monday night and then we would have had to leave at 5am on Tuesday for the appointment! Jim's plane was delayed by a couple hours so it was later when he got home. We were glad we didn't have to get up at 4:00! It did turn out to be quite slippery here this morning and school was two hours late again. I was worried that we'd have to wait a whole month to get Luella in but Dr. Bishop herself called me and worked us in for next week!! Hopefully we are DONE with winter by then! Bless my dear neighbor for clearing my driveway / sidewalk three times while Jim was gone!! I'm really tired of the snow and cold!

Luella is currently 8 days seizure free! She did have a seizure April 15th but remained seizure free the entire time Jim was gone! We pray that we can just keep adding days! About the last seizure... I had just told Ashlyn I needed to run upstairs and that she should keep an eye on Luella. They were already playing catch with a balloon and Luella was having fun. I didn't even get to the top of the stairs and Ashlyn yelled that Luella was having a seizure. Ashlyn recognized the seizure immediately and lowered Luella to the floor before she fell! She did exactly what she was supposed to do! It was another more violent seizure and she bit her tongue again but she was feeling almost back to normal within a few hours. I'm so thankful for Burke, Ashlyn and Ryker and the help they are with Luella!!

I've made it through Jim being gone many days! He does have one more trip coming up and then hopefully he can be home for awhile. I've gotten a pretty good routine down though! :-) Now we pray that we can actually get Luella to her appointment next week and that she will handle the long day of testing okay! Thank you all for your prayers and continued encouragement!

Catching up....

Lots of things to report! I haven't taken the time to write since Jim was gone for work and we just had a big ice storm with snow AND kids home from school! :-)

Luella has had a couple of seizures in the last week. One on Saturday morning - Jim was gone then but the other kids were great helpers and Luella came through it pretty well. She also had a seizure last night (Wed) after supper. Jim was home but wasn't nearby and once again the kids were great helpers. While two seizures in a week's time is more than we'd like for Luella, we also want to remember that so many little ones are dealing with SO much more. When you keep Luella in your prayers, please pray for little Regan (she has Dravet also). She's had over 300 tonic clonic (grand mal) seizures in the last week! It's just heartbreaking!

On a positive note, Luella has really accomplished some "big girl" things this past week! When Jim left for work last week I decided it was time to get busy potty training Luella. She will be 3 1/2 this month and Ashlyn was potty trained closer to 2 1/2. I felt that I didn't want to put too much pressure/stress on her before now and was just going to let her tell us when she was ready. I decided I was ready! I thought she could do it too so on Thursday we went to school in the morning then after her nap I put her in panties and showed her the "Potty Train" chart I made for her. She was very excited! She's been in panties since (except nap and bedtime) and only had 4 accidents - one was during her seizure on Saturday... another thing we'll deal with now. But she has done GREAT!! She is SO proud of herself! She couldn't wait to tell daddy when he got home and show him her sticker chart. (I kept our endeavor a secret from him while he was gone.) Jim says there is no problem I can't solve with crafting! :-) It feels weird to not be changing diapers during the day!! This is the first time in 9+ years we haven't had someone in diapers in this house!! I guess technically Luella is still wearing diapers when she sleeps, but not having to change diapers all day is awesome!! There was a time when we had THREE in diapers here!!

Another "big girl" thing is being able to swallow a pill! We wanted to try time-released melatonin for Luella to see if it would help her sleep better through the night. We've been dealing with some rough nights lately... well, mostly daddy has been dealing with them. Jim is great and lets me sleep! Mostly because I'm a softy and can't let her fuss or cry! Last night she was up for five hours straight!! Anyway, the melatonin is little tablet and she is able to swallow it just fine! We had a couple nights that it was pulverized, but now she does great! Sadly, it isn't helping her sleep. :-( But since she took that just fine we tried giving her one of her other meds as a whole capsule tonight and she got it right down!! This will make giving her meds SO much faster/easier!!

Luella was scheduled for her neuropsych evaluation today but since we got so much ice and then snow we had to reschedule it for a couple weeks from now. While it's been sad so see so many trees going down in our town, the snow was perfect for making a snowman and the kids had fun collecting icicles today! Luella was able to be out for about an hour and a half and had so much fun playing in the snow!! And NO seizure!

Please continue to pray for Luella  - pray for better sleep, for a successful neuropsych eval in a couple weeks and  for things to go smoothly while Jim travels again later this month. Please remember to say an extra prayer for little Regan too! Thanks everyone!!

Purple Power

Let me start out by saying this post is past due! I should have posted this last week. Tuesday, March 26th was Purple Day for epilepsy awareness. We all wore purple in our house and I thought I'd probably see a few friends and family wearing purple too. I was overwhelmed by all the support! I was at Bible study that morning and several friends there had their purple on! Had I given them more notice, I know more would have! Back in November for Epilepsy Awareness Month they all surprised me by wearing purple!! They are a GREAT group of ladies who always do more than they should! :-) I had quite a few messages throughout the day from people telling me they had their purple on and a few pictures shared with me as well. A high school friend who runs a daycare did a MAJOR purple day! All the little kiddos wore purple and also had sweet little purple ribbons painted on their cheeks! They each decorated a purple flower for Luella and mailed them along with several other purple goodies for her. We found a very special place for Luella's "purple garden"! It's the kindness and encouragement and most importantly the prayers we get from all you special people that give us hope for Luella. Epilepsy does not get the attention and funding it deserves. We pray that through these Purple Days and Purple Months we can build awareness and change that for Luella and so many more.

Some pictures from Purple Day 2013

With Mommy and Daddy

Luella and her siblings.

Purple Accessories!

Purple Friends

Shana's Daycare Kids

Of course Luella wanted her own purple ribbon once she saw all the other kids with theirs!

Luella's Purple Garden