"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

Tuesday, January 21, 2014

Letter SENDING Campaign begins!

I'm following the idea of another MN Dravet mom and we are launching a letter "sending" campaign. The electronic forms are great to fill out too but an actual physical letter, a.k.a. "snail mail", is what we are focusing on now. We want LOADS of mail delivered to Governor Dayton's office! We want to encourage Governor Dayton to support the pending medical marijuana legislation!

For local people - PLEASE ask me for a letter!! I will be carrying around printed letters already stuffed into an addressed envelope with a random picture of Luella battling Dravet included as well. All you need to do is ask me for a letter, sign and fill out your contact info, put a stamp on it and drop it in the mail. There is a section at the bottom for you to write a personal message if you want to also. I'm just asking you for about 60 seconds of your time and the cost of a stamp. Super easy!!

If you don't see me often or you live far away, you can print out the letter below which includes a picture of Luella right on the letter. Just send it to the Governor at the address printed at the top of the letter. You can send a letter even if you aren't a MN resident. We would appreciate everyone sending a letter!!

Send a Letter to Governor Dayton
Click the letter and print the PDF.

Sunday, January 19, 2014

Another MN Family's Need for Medical Marijuana

In becoming more involved in the Medical Marijuana bill here in Minnesota, we have been in contact with another family with a 7 year old girl that has Dravet syndrome. Amelia is having 20 -30 seizures daily and desperately needs access to medical marijuana. Her story was featured in the Duluth News Tribune on Sunday. Please read and education people around you on the importance of legalizing medical marijuana.


Amelia's mom also keeps a blog - http://www.cupcakesandhomeschool.com/

If you haven't already done this, please take 30 seconds to fill out the form (on the following link) and send a letter to Gov. Dayton urging him to sign the bill!

Thank you!!

Thursday, January 2, 2014

December Summary / Not the Best Start to 2014

On a positive note, Luella once again had only three seizures the entire month of December (same for November)! Her last seizure of 2013 was on Monday (Dec 30) - it had been two weeks since the last one! It was a rather stressful seizure for me to handle though. Luella had just gone down for a nap and within about ten minutes of me laying her down her O2 started dropping slightly causing her alarm to go off. I went in to her room and she was awake and seemed okay. I asked if she was okay and she replied "I'm okay!" I messed around with her pulse-ox sensor a little and moved Luella slightly and the O2 seemed to come up again so I left. Just eight minutes later the alarm sounded again and this time Luella was seizing. Jim and Burke were gone to a movie so it was just the other three kids and me at home. Ashlyn ran after the meds for me and I immediately gave midazolam. THREE doses later the seizure finally stopped!! I was kind of a mess after that one. I interrupted Jim at the movie to see if he thought I should take Luella to the ER after that much midazolam but since she was sleeping again and I was monitoring her anyway at home with the pulse-ox we decided to stay home. She slept a long time! By 4:00 she was waking up and complained of a headache so we just snuggled for another hour and a half on the couch. By 6:00 she was feeling better and more herself.

The first day of 2014 and Luella started the year off with another seizure Wednesday night! This time while showering with Ashlyn after supper. It's so weird how we can go two weeks then only two days! And this seizure stopped on its own too. Dravet syndrome is so random! While it's not how I had hoped to start the new year, I do have hope that it will be a good year.

"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

Luella was able to have lots of fun with her siblings during Christmas break! It's been extremely cold here but for a couple days after Christmas it was rather pleasant outside and we got in some fun family sledding time! Luella had a blast. Of course we were on high alert knowing the excitement and the cold could trigger a seizure but Luella enjoyed a full hour of sledding without any problems. Below is a video of the fun!

Watch on YouTube here: http://youtu.be/VWMURTwDe7w

We hope you all had a very Merry Christmas 
and we wish you many blessings in 2014!

Christmas Card 2013
View the entire collection of cards.