Gratitude

On this Thanksgiving day I just want to express my gratitude for my family. I am so thankful for an amazing husband who continually works so hard for our family. I am also so grateful for each one of my kids and what they bring to our family.

I want to write some feelings of gratitude I have for miss Leah.

I have been thinking a lot this week about what Leah has brought to our family and others.

She lights up the room! People really gravitate to her. I love watching people meet her for the first time. Everyone says how much they love her eyes. They also love her skin color and her long thick eyelashes. People always say "she is so beautiful". They always ask a lot of questions about her. I really love it. I like telling them about her. I am so blessed to be her mom. I am so honored to take care of her. The days are hard but very worth it!

I am so thankful that she has changed my life forever... I tell her that everyday...I thank her everyday for changing my life.

She is changing others lives everyday. They see her and what she endures daily and they find strength  to fight their own life battles. It's beautiful! I see miracles happen daily because of her strength.

I don't mean to be too cheesy but Leah truly is an angel. If you don't believe in God please come to my house and I will share with you the miracles I see everyday.

A little something I wrote...

A little something I wrote to the Utah families fighting for Alepsia:

Just keeping it real...
I would like a politician to spend a couple days in my home and painfully watch my beautiful two year old daughter scream into a seizure, foam at the mouth, go blue then a pasty white followed by incredibly scary labored breathing. She then vomits and tiredly falls asleep only to her waking up an hour later to experience it all over again.

This is torture to watch and I can't imagine the torture she feels. If any good hearted politician watched her or any of your beautiful children go through these horrible seizures and see's how it affects every member of our families. I know they would make Alepsia immediately available to all of our children.

I am amazed by all of you! I am proud to fight this fight with all of you! Thank you Jennifer and Annette for leading this battle. You both are the strongest women I know!

As we say in our family...Stay strong, never give up and keep moving forward. Always keep a indomitable spirit!!!

Much love to you all!!!

A peaceful moment!

Love this!

 I had a moment this morning with Leah. I was holding her all morning and she drifted in and out of sleep so peacefully.  For some reason her body will not go to sleep without having a seizure. It was so nice to have a peaceful moment with her and no seizures. 

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!

The Big day!!!

Tomorrow is a big day! 

Tomorrow we will be attending a meeting of the controlled substance board. They will be hearing a presentation on CBD oil. We are in hopes that because of the nature of the oil, which is high in CBD and low in THC (the part that makes a person high), they may reclassify it as Hemp. It is an interesting thing to think about. There are hemp products everywhere that have more THC than this oil. We don't know when the board will make their decision, but if and when they do, they could make this available to us in Utah with the stroke of a pen. We will be crossing our fingers! We will also have the opportunity to meet the Stanley Brothers before the meeting. They are the owners of the Realm of Caring. They are the people that developed the cannabis strain that is having such a great effect on so many children. We are looking forward to meeting them and telling them thanks for all of their hard work.  We can't wait!

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!