It has been a crazy busy exciting couple of weeks, actually I should say months! Asia is doing so well, she took her last Topamax pill about a week ago and she is doing fantastic. You could tell she was having some good and bad days, I suspect that she had a few migraines that included throwing up. I am sure weaning from a medication that she has been taking for years would cause this effect. Her screaming tantrums have calmed down a little and now she is a "laugh-er", and boy has she gotten spunky. If you need her to do something--she will sit down laughing just to be a rebel. She has gotten so fast, she is starting to run (gallop) really quick! New words everyday and her eating has improved a thousand times! Her bus drivers and school teachers are constantly telling me about the new things she is saying and doing and they are sooo excited-it is such a relief. She has begun saying some words she hasn't said in years (including the word "purple"-yes, I am excited about that one) her teacher mentioned she has started calling two classmates by name (we didn't even know she knew their names) it just keeps getting better. Next goal (down the road) will be to wean her off of Depakote--I can not wait for this day. I can't imagine what she could be like without any of these anti-seizure meds messing with her ability to develop and communicate. This brings me to my next topic-
Yes-Yes-and a Yes! You may have seen my past posts on Cannabis, Medical Marijuana, Alepsia, Charlotte's Web, Hemp oil or HB105 and what it meant to us with a child with epilepsy. Well, several amendments later, this week the Utah senate passed unanimously House Bill 105 which will allow the families of Utah, under the supervision of a neurologist, to bring this hemp oil into the state with out fear of prosecution; to treat their children with epilepsy. This gives so many families so much hope. If Asia regresses, and begins to have these severe seizures after being weaned off of her current medications-I will not put her back on them. I will now be able to purchase Hemp oil or "Charlotte's Web" from any state that sells it and bring it back to the state of Utah.
The HB105 process was a lengthy one with hundreds of man hours put in. A process I wish I could detail but there is to much, I don't even know half of all that was done. A special thanks to the dream team: Representative Gage Froerer, Laura Warburton, Senator Steve Urquhart, Jennifer May, Annette Maughan, Emilie Campbell, April Sintz, Realm of Caring and all of the families that help spread awareness and educate others on what this plant can mean for the medical world. The change of heart that we saw in people who started off completely against it were, in a matter of months, for it- this was nothing short of a miracle. Not only is the state very supporting but, I heard several senators mention that this was a first step in this type of treatment. Wow-beginning with a "no way" and ending up with a lot of very open minds. This type of Hemp does not cover all of the medical patients looking to marijuana as a medical treatment and I sympathize with them-hopefully, others will begin to see the many uses of this plant. Different types of marijuana plants have a great potential to help those who are suffering. The bill has a two year sunset to review the progress that our children are having on this oil. I will be so interested to see how the results turn out and where Charlee's Law will take Utah when it comes to alternative medical treatment.
HB105 will be dedicated to our special friend Charlee. Charlee battles Batten Disease and is in her last couple days of life. Charlotte's web would not have cured her but, would have helped her control her severe epilepsy. She is a beautiful Angel and her parents brought her to the Senate vote. It was a very emotional time for all parents and senators in that room. I have listed her Face book page and her website below. Please take a minute to look at them. Thoughts and prayers to Charlee's family.
Her Website: http://www.charleesangels.org/
Her FaceBook Page: https://www.facebook.com/charleesangelsbenefit
Charlee's Law: http://fox13now.com/2014/03/11/senate-passes-cannabis-bill/
Lots of Links!
Interactive photo gallery of some of the HB105 children. Look for Asia and her friends: http://www.sltrib.com/sltrib/news/57636966-78/sltrib-com-html-http.html.csp
If you want to know more find Hope 4 Children with Epilepsy. Here is the FaceBook Link: https://www.facebook.com/Hope4Children
Some Recent News Articles:
Just out-Weed 2: http://www.cnn.com/2014/03/05/health/gupta-medical-marijuana/index.html