Epilepsy Awareness!

November is Epilepsy Awareness month. It feels so good to spread the awareness of Epilepsy. Since Leah has been sick I have had so many people come up to me and tell me they have Epilepsy. I never would have known because fortunately medication controls their seizures but it's still a battle for them. They have to deal with the horrible side effects of their medications and they never know when a break through seizure will happen. Around 3 million people in the US have epilepsy. Neurology and the brain are so complicated, doctors don't know why seizures happen! But together we can be united and always have hope for a cure!

I saw this on a shirt and loved the saying! It's exactly how I feel!

My kids are loving this awareness. We are making white rubber band "Hope for Leah" bracelets that have the purple ribbon on it. They are so excited to hand them out to their friends. We also emailed the "Ellen" show and told them about Epilepsy Awareness month and told them Leah's story. We asked if she could spread the word about Epilepsy Awareness. My kids are so excited and hope they do a segment on Epilepsy awareness. I told them the chances are one in a million but I also told them that that's okay because we always try. 

Hope 4 children with epilepsy

Hope 4 children with epilepsy is a group of parents whose children have severe epilepsy. We had a dinner last night and we got to meet a lot of the incredible families. It was so nice to finally meet the amazing women who started the group. Annette and Jennifer are so busy everyday, fighting to get CBD oil legalized for our children. We desperately need this new treatment option for our children. Here is some information about the CBD oil treatment:

Alepsia is the trade name for the high CBD/low THC cannabis plant. This plant has anti-epileptic properties. CBD has the medical benefit while THC causes a high. The Alepsia plant is a hemp plant with less than .03 THC and has 20% CBD. Alepsia has been given to children with refractory epilepsy and the results were substantial. The children had a 80% response rate, at least a 50% reduction in seizures, no side effects and it also has neuro-protective properties.

I have had so many friends and family ask what they can do to help (LeAnn- thank you for asking).
Right now we need everyone to share this information. Please tell your friends and family about Leah and these children and this new treatment that they need. As far as the legislation goes it's kind of a waiting game right now. Many wonderful things are happenings and big meetings are being held. We have some great support behind us but we need more of the public to be informed. Also, the Stanley brothers from the Realm of Caring foundation in Colorado are helping us fight for this oil to be legalized here in Utah. Again...please share Leah's story and this new treatment for epilepsy.

We would do anything to see this beautiful smile again!

Halloween fun and more...

Leah was a ladybug for Halloween! Here's some pic's of all the Halloween fun:

This is Leah at the Kauri Sue Hamilton school (special needs school). She loves it there. Her eyes just light up when she is there! They sang Halloween songs, read Halloween books, decorated cookies (mom decorated one for Tyler) and they went trick or tricking to the administration offices. Super fun!

Leah with her brothers & sister.

The kids carved a pumpkin for her. A very happy pumpkin!

Here Leah's therapist's are putting together a cute chair for Leah to have at school. These woman are pure entertainment. They are so funny. 

Me and Leah hanging out watching Becca and Susan put the chair together. I was feeling very useless but got a good hour of one on one with her. She was having a really good day that day!

Leah and my dad at Trent's Lacrosse game. It was a beautiful Fall day so I took Leah to the game. She loved being outside. I cannot expression the amount of gratitude I have for my dad. He comes to my house every Wednesday and helps me. He does dishes, sweeps, mops, laundry...everything. I am so thankful for him. I love him very much!

                                                 

Another great picture of these two cute kids!

Appointment with Dr. Longo

Dr. Longo is Leah's metabolic/genetic doctor, we meet with him yesterday! First of all walking into Primary Children's hospital is always difficult. Walking through the doors and smelling the hospital, smelling the hospital food and having all the horrible memories of all the times she has been in the hospital flash before me all as I'm walking to the doctors clinic. I was overwhelmed with so much emotion and anxiety.  All the emotion's of everything we have been through came to the surface. I had many times during the appointment and after the appointment of wanting to just crawl in a hole and cry for a couple hours. Yes, crazy things have happened for two years. But, the wonderful thing is I get to determine how I react to those things. As much as my poor body wants to go into shut down mode sometimes.  I will not let it, I will leave those emotion's in the past. I will keep moving forward... I will keep fighting! I will do it for Leah, my husband, my kids and most of all for myself! I had a diet coke and a little chocolate and I told myself to let it go!

About Leah's appointment...Dr. Longo feels that the GRIN2A gene may not be what's wrong with Leah. Chad and Leah both have a mutation in the GRIN2A gene...the big question is why is Chad normal and Leah isn't?!!! Chad and I have been wondering this ever since we got the test results.  So...he wants a full DNA sequencing done on her and maybe the whole family.  Well, this is CRAZY expensive!!! He said that the U of U is trying to get a grant from the government right now to do this genetic testing and they will find out in a month or so if they got the grant. If so, this can be done for free. If not, then we just have to see what our insurance will cover. We have always had a feeling that there was something else wrong with Leah. Dr. Longo said that maybe this gene mutation is just simply a mutation and not the cause of Leah's problems. He said we all have mutations. So, here we go again. Back to square one.

In the mean time... he is increasing her Serine supplement and starting vitamin B-12 shots. They also did a urine sample to rule out a couple things. We are also going to see a new neurologist.

We will keep fighting the battle!

Leah at the pumpkin patch

We went to the pumpkin patch last week and had a blast picking pumpkins!

Here's some pics:

I promise she didn't have a ride in the wagon....haha!! Could you imagine?! We are crazy parents but not that crazy ;) 

Video of Leah's awesome day!

Here's a video of Leah when she had a great day last week!

Here's a cute pic of her!

Yesterday Tyler said to me:

"Mom, I'm Leah's superhero".

That kid amazes me!

I think I may have posted this quote before but I just love it!

Video of Leah holding her head up!

Leah's therapist brought us a nice bench for Leah. They showed me lots of therapy techniques. Here's a couple fun video's. Becca was wearing a mask because she had a cold and she didn't want to give it to Leah. She was hiding behind Leah! Her therapist's crack me up! 

This video is good, but I have another video where she is totally holding her head up all by herself for a long time. I am having a hard time downloading it so I will have Chad help me post it tomorrow!

Here's another great quote: