Friday, November 22, 2013

The Alepsia battle continues...

Sorry for the long delay of not posting: First of all the substance control meeting last week went well. It was our first baby step towards getting CBD oil legalized in Utah. The board is worried about the long term effects of Alepsia (CBD oil). We as parents aren't worried about the long term effects. We all live in the "now" we know our kids will not live long on the road they are all on right now. These seizure medications and the side effects from the meds are slowing shutting down our kids bodies. All we know is that the oil works and it's worked for two years now with literally no bad side effects.  Meeting the Stanley brothers, Josh and Joel that day was awesome. They are amazing men! We also met Rep. Froerer who is supporting and representing us! He is such a compassionate man. He sat by us during lunch and asked us all about Leah. We are so thankful for all his hard work for us and the hard work from the Realm of Caring foundation.

Here is Josh Stanley speaking to the board.

Here we are with Josh

Basically this is what it all boils down to...Alepsia is the hemp product we need for our sick children. Hemp is legal in Utah if brought in from another country but not legal when brought in from another state. This is the law we are trying to change. I hope that makes sense? There will be more meetings this week continuing to try and change this law. Lots of prayers this happens soon! We don't have time to waste our children need the oil now...well we really needed it two years ago ;)

More on Leah!!!

She is doing pretty good! We always have rough days but it seems that we are on a track lately of having more good days than bad days. YAY!!!

Here is Leah having some good days! These are days where she is having only one or two seizures a day. Miracle days is what I call them!

Leah with her awesome brothers.

One day I was watching a video on my iphone of a girl who has cancer singing the Katy Perry song "roar"(by the way it's amazing everyone needs to youtube it) and Leah reached out her hand and set it on mine. Oh yes, I sure did cry! She has never done that!

 Leah wearing her purple for epilepsy awareness month. Another awesome day!

Leah doing physical therapy. She had such a cute little smile that day! She did so good at therapy this day!

My daughter Lauryn amazes me! The first week of Epilepsy awareness month she asked all her friends to wear purple on Friday. She also took a washable purple marker to school and she drew a purple ribbon on the students hands. Many kids don't know what epilepsy means. Lauryn then educates them and also tells them what an indomitable spirit means, it means someone is strong and never gives up! One day the students could dress up as superhero's and Lauryn dressed all in purple and made a sign that says "My sister is my superhero". She did all this on her own. She also is selling Leah's bracelets at school for a dollar. I am amazed at the support of junior high kids. Some kids have given $10 and $20 dollars. Lauryn wrote thank you cards to the kids who donated money to Leah. She also received a letter from a girl who expressed how much Lauryn is an example to her. I couldn't be more proud! 

Here is a pic of Leah's bracelet.

Another beautiful day with Leah! This day she fell asleep in my arms! She looked so pretty and so innocent!

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