Our family attended the signing of our bill last Tuesday, March 25th. It was so great to have all of kids with us up at the capital and to see Gov. Herbert. It was such a great experience for all of us. The room where the signing was taken place was just so beautiful. It was so fun to tour the Capital with our children. They loved it and thought it was so neat! Chad and I were interviewed on KSL.
I finally was able to meet Charlee's mom and dad and brother and sister at the signing. Chad and I immediately bonded with Charlee's parents. After the signing, all of the families went to the top floor of Zions Bank and had a nice dinner that was put on by the Utah Epilepsy Association. While we were having dinner Jeff and Katrina wanted to hold Leah the whole time. I could tell they had such a special connection with Leah. Katrina cried many times holding Leah. She could fill of Leah's spirit and she commented that she believes that Charlee and Leah are together playing. I believe that Charlee and Leah have a special heavenly connection.
Sometimes I really struggle with writing on Leah's blog. When I go through a long period of time without writing it's because Leah is not doing well. And when Leah is not doing well I am not very well. Therefore, no writing takes place. Her blog is her journal, not mine. The last thing I want to do is complain about how difficult this situation is for me. Leah had a really bad week last week. She seized all day long almost every single day. Her medication was doubled almost every single day so she was either sedated or seizing. Those kind of weeks really really scare me. I struggle watching her suffer through her seizures. She had the kind of seizures that make her go blue, foam at the mouth and stop breathing. It's so emotionally exhausting because every single seizure I pray that she pulls through it. Luckily, we have a track record of her pulling through every seizure but in the back of my mind I always have the thought of: what if she doesn't pull through this one. Death is on my mind a lot when she has these kind of weeks. Every single morning when I go into her room I hold my breath until I see her blink her eye that is the que that she lived through the night. This is truly not a way to live. Fear tends to take over me. I am really scared of losing my baby! She has a horrible condition. I am afraid that what she may have is degenerative.
Monday, March 31, 2014
Sunday, March 23, 2014
Sweet Charlee Nelson
Sweet Charlee passed away just a couple days after the bill was passed. Although we don't personally know Charlee we have felt a connection to her and her family. My heart broke when I found out that Charlee had passed away. Charlee's disease really resembles what Leah is experiencing. When we would see pictures of Charlee we felt like she resembled Leah. One of my close friends and client is Charlee's aunt. When Charlee got sick at 3 1/2 or 4 years old, that's when Leah also got sick. My client Natalie and I would exchange stories of what Charlee was experiencing and Leah was experiencing, both were very similar. In fact, many of Natalie's family members would ask me if Leah has been tested for Batton disease. To be honest, I really have no idea if she has been tested for it. I am assuming she has been tested for it. That is something I am going to have to ask her doctors. Anyway, I followed Charlee's story for a couple of years. Always feeling very anxious to one day meet Charlee and her family. I belong to support group where we go to dinner once a month and chat. Charlee's mom belongs to the support group but because of Charlee's condition the past couple months she hasn't been able to come. We never got the chance to meet. Then finally my husband met her family at an Angels Hands Foundation family activity, it was a monster truck show. Chad took Tyler and Trent to the show and ran into Jeff (Charlee's dad), they introduced themselves and realized they went to college together. Such a small world. We wish that Charlee could've had the chance to be treated with the CBD oil before her passing so that she didn't have to suffer through all of her seizures and any pain she was experiencing. Our hearts ache for her family! Charlee was truly an angel!
We are extremely anxious to get oil for Leah right now! Leah's doctors wanted to try a new seizure medication. Well, another seizure medication on top of her phenobarbital. We have been very frustrated these past three weeks trying out this new seizure medication. It seemed like it worked for the first two days. Then she started having tons of bad seizures. Her initial dose was only .5 ml. We tried that for two weeks. Nothing changed, she continued to seize over and over. The seizures were not better, they were by far worse being on the medication. So, we decided to up it to 1 ml like what
Dr. Filloux told us to do. Well, she went completely sedated-totally blank in the face and seizures got even worse. It was so hard to see her in this state. I cried and told Chad something was totally wrong and that we need to take her back down to .5 ml. So we keep her at that dose for another week. Seizures never got better. We both decided we gave it a good try. She is officially off the new med. Seizure medications are the devil!!! Leah desperately needs CBD oil!
When will we get the oil? Who knows!!! Hopefully we get some news soon!
We are extremely anxious to get oil for Leah right now! Leah's doctors wanted to try a new seizure medication. Well, another seizure medication on top of her phenobarbital. We have been very frustrated these past three weeks trying out this new seizure medication. It seemed like it worked for the first two days. Then she started having tons of bad seizures. Her initial dose was only .5 ml. We tried that for two weeks. Nothing changed, she continued to seize over and over. The seizures were not better, they were by far worse being on the medication. So, we decided to up it to 1 ml like what
Dr. Filloux told us to do. Well, she went completely sedated-totally blank in the face and seizures got even worse. It was so hard to see her in this state. I cried and told Chad something was totally wrong and that we need to take her back down to .5 ml. So we keep her at that dose for another week. Seizures never got better. We both decided we gave it a good try. She is officially off the new med. Seizure medications are the devil!!! Leah desperately needs CBD oil!
When will we get the oil? Who knows!!! Hopefully we get some news soon!
Friday, March 14, 2014
The Senate unanimously passed our bill!
On Tuesday, March 11 the Senate passed HB105 unanimously!!! It was an amazing experience as Chad and I sat in the Senate gallery and anxiously waited for the Senate votes. Our sponsor Senator, Sen. Urqhart presented the bill to the Senators then five senators responded to the bill with such great support. I loved what Sen. Mayne said: she said that we need to jump into the water and give these children a chance at a better life. Sen. Urqhart then presented to the Senate floor a little girl named Charlee Nelson. She was then wheeled in by her parents. (She is a six-year-old little girl who is dying from a neurological disease called Batton Disease). He began to tell the Senators that Charlee's parents wanted the chance to treat Charlee with CBD oil but unfortunately it's too late. Charlee only has a short time to live. There was not a dry eye in the gallery, even a couple of senators were crying! The Senators then stood up and applauded her and her family. Then the Senate asked that us families in the gallery wave down to them. The Senators then again stood up and applauded us families. Words can't describe the emotions we felt when the senators applauded us for all of our hard work and how hard our lives are on a continuous basis with our epileptic children. It was just amazing!!! Then the senators voted: it was unanimous!!! What a beautiful day! Chad and I then walked out of the gallery and hugged all the families with huge smiles on all of our faces. Chad and I were interviewed by KSL News and Leah's picture was on a lot of the news stations. The bill is now called "Charlee's law". It was named after the beautiful Charless Nelson. The Governor is signing the bill next Tuesday.
A special thanks to Jennifer May and Annette Maughan who led the group of families. They put their lives on hold to get this bill passed. They spent 45 days up at the capital Monday through Friday lobbying for the bill. Saying thank you to these women is just not enough! Our group calls them rock stars! Also, a big thank you to Sen. Urqhart and Rep. Froerer for standing up and taking on this bill and fighting for Leah and all of the beautiful children from Hope 4 children with epilepsy. I love what Sen. Urquhart said in an interview: "These families never got discouraged". All of us families fought with an indomitable spirit. We never gave up! These families are the strongest people I know. The legislature said that us families handled this bill with such respect and kindness. They have been very impressed with all of us. This is an experience that I will never forget and I am so proud to have fought this fight with every single one of these families! God bless each of them as we one day get the oil and treat our children.
Thank you for all of you who wrote letters to your congressman. It's because of "THE PEOPLE" that this bill passed. We spoke up and wanted to be heard. WE WERE HEARD!
I wanted to end with an email from our Senator, Sen. Madsen:
Dear Chad,
Thank you for contacting me with your thoughts regarding HB 105, Plant Extract
Amendments. I always value input from those I serve. There is much more wisdom among the
people, beyond government, than will ever exist within government.
Evidence is overwhelming that marijuana, or cannabis, has beneficial medical applications, among them
pain relief, and as a treatment for nausea and lack of appetite.
Studies of hemp oil as an effective treatment for children with severe epileptic seizures, however are are few, due in large part to superstitions promoted by those who profit from the “war on drugs.” Government prohibition of an essentially benign substance collaterally stigmatizes and stymies invaluable medical research and denies access to medications that improve quality of life and, in fact, save lives. HB 105 would relax absolute prohibition, enable important research, and offer very real hope to families who are now forced to sit and watch a beloved child deteriorate and die before their eyes because power hungry and self-interested elements within government justify their existence, their consumption of taxpayer dollars and their dominion over would be free people by insisting that the state must forcibly prevent citizens from ingesting marijuana.
As an elected representative I believe that government derives its authority from the just consent of the governed, and I recognize that the authority of government as a creation of the people and a repository of a small amount of the people’s sovereignty cannot exceed the authority of its creator. If natural law does not recognize in me the authority to physically force my neighbor not to take something into his body, then how can that authority be delegated to, or exercised by, government. I do not believe that government possesses the authority to prohibit individuals from ingesting substances into their own bodies, despite my personal opinion about whether someone should smoke, drink, put salt on their food or drink a 64 oz. soda.
As an ardent adherent to the political philosophy of our nation’s founders, I would prefer that we end cannabis prohibition entirely, but this bill is acceptable progress, and I am in favor of HB 105.
Thank you again for paying attention to, and participating in, the public policy process
and for offering your input. Do not hesitate to communicate any further questions or concerns to
me.
Sincerely,
Senator Madsen
Senator Urqhart and Rep. Froerer presenting the bill.
Chad and I after the bill passed!
Our awesome friends decorated our house in celebration!
They always cheered us on. We are so grateful for their support.
They always cheered us on. We are so grateful for their support.
A special thanks to Jennifer May and Annette Maughan who led the group of families. They put their lives on hold to get this bill passed. They spent 45 days up at the capital Monday through Friday lobbying for the bill. Saying thank you to these women is just not enough! Our group calls them rock stars! Also, a big thank you to Sen. Urqhart and Rep. Froerer for standing up and taking on this bill and fighting for Leah and all of the beautiful children from Hope 4 children with epilepsy. I love what Sen. Urquhart said in an interview: "These families never got discouraged". All of us families fought with an indomitable spirit. We never gave up! These families are the strongest people I know. The legislature said that us families handled this bill with such respect and kindness. They have been very impressed with all of us. This is an experience that I will never forget and I am so proud to have fought this fight with every single one of these families! God bless each of them as we one day get the oil and treat our children.
Thank you for all of you who wrote letters to your congressman. It's because of "THE PEOPLE" that this bill passed. We spoke up and wanted to be heard. WE WERE HEARD!
I wanted to end with an email from our Senator, Sen. Madsen:
Dear Chad,
Thank you for contacting me with your thoughts regarding HB 105, Plant Extract
Amendments. I always value input from those I serve. There is much more wisdom among the
people, beyond government, than will ever exist within government.
Evidence is overwhelming that marijuana, or cannabis, has beneficial medical applications, among them
pain relief, and as a treatment for nausea and lack of appetite.
Studies of hemp oil as an effective treatment for children with severe epileptic seizures, however are are few, due in large part to superstitions promoted by those who profit from the “war on drugs.” Government prohibition of an essentially benign substance collaterally stigmatizes and stymies invaluable medical research and denies access to medications that improve quality of life and, in fact, save lives. HB 105 would relax absolute prohibition, enable important research, and offer very real hope to families who are now forced to sit and watch a beloved child deteriorate and die before their eyes because power hungry and self-interested elements within government justify their existence, their consumption of taxpayer dollars and their dominion over would be free people by insisting that the state must forcibly prevent citizens from ingesting marijuana.
As an elected representative I believe that government derives its authority from the just consent of the governed, and I recognize that the authority of government as a creation of the people and a repository of a small amount of the people’s sovereignty cannot exceed the authority of its creator. If natural law does not recognize in me the authority to physically force my neighbor not to take something into his body, then how can that authority be delegated to, or exercised by, government. I do not believe that government possesses the authority to prohibit individuals from ingesting substances into their own bodies, despite my personal opinion about whether someone should smoke, drink, put salt on their food or drink a 64 oz. soda.
As an ardent adherent to the political philosophy of our nation’s founders, I would prefer that we end cannabis prohibition entirely, but this bill is acceptable progress, and I am in favor of HB 105.
Thank you again for paying attention to, and participating in, the public policy process
and for offering your input. Do not hesitate to communicate any further questions or concerns to
me.
Sincerely,
Senator Madsen
Tuesday, March 4, 2014
We did it! The bill passed the House!
So exciting! I will add more text later today.
Leah's story made it to the Desert News! Here's the link:
Now on to the Senate!
Sunday, March 2, 2014
Big day! Our bill HB105 is being voted on!
Tomorrow Monday the 3rd is a big day for our family! The House is voting on the bill for CBD oil. Our group is pretty confident the bill will pass but I am very nervous! Just a small note: honestly this shouldn't even have to be voted on, we should have all rights to access any treatment we need to save our children's life. Please say lots of prayers for this to pass! It all goes down at 3:00 tomorrow. I am going up there with Leah. They need to see our precious children. Chad has important work to do so he can't make it, so I am taking my dad with me. Our group is all wearing purple! All media will be there.
A little update on Leah. She was experiencing a lot of seizures last week, we are talking a seizure an hour. She still maintained her ability to be aware and move a lot because of the dopamine but the seizures needed to slow down. We spoke to Dr. Swoboda, she was disappointed that the dopamine caused her to have so many seizures so she backed off the dosage a bit. It helped. Her seizures slowed down but now what? We want to continue the dopamine so now we are going into Dr. Filloux office this Thursday to talk about the seizures and what is the next option. By the way, Dr. Swoboda told us she fully supports us to try CBD oil. Yay!! It's so nice to have all of our doctors support.
We found out this past week that Leah loves balloons, what two year old doesn't love balloons! I tied the balloon on her wrist really low and her eyes followed that balloon for hours. She would lift up her arm and try and touch the balloon. It was so fun to watch. Here's a pic:
A little update on Leah. She was experiencing a lot of seizures last week, we are talking a seizure an hour. She still maintained her ability to be aware and move a lot because of the dopamine but the seizures needed to slow down. We spoke to Dr. Swoboda, she was disappointed that the dopamine caused her to have so many seizures so she backed off the dosage a bit. It helped. Her seizures slowed down but now what? We want to continue the dopamine so now we are going into Dr. Filloux office this Thursday to talk about the seizures and what is the next option. By the way, Dr. Swoboda told us she fully supports us to try CBD oil. Yay!! It's so nice to have all of our doctors support.
We found out this past week that Leah loves balloons, what two year old doesn't love balloons! I tied the balloon on her wrist really low and her eyes followed that balloon for hours. She would lift up her arm and try and touch the balloon. It was so fun to watch. Here's a pic:
Leah has finally gone back to play group at Kauri Sue Hamilton special needs school. It was bear day. All the activities revolved around teddy bears. Leah got to smell scented play dough and hold it in her hand. She pushed hard down on the play dough when it was in her hand. They do a lot of sensory activities. The therapist made a bear cave for the kids to go in (it was so cute). We read bear stories in the cave (pic with Ty on the bean bag). At the end the group goes to a sensory room to play. Leah loved the little tramp. We bounced her and she always in some way told us she wanted more. She would move her legs to tell us. I love that we are establishing some kind of communication with her. She also laid in the balls with Tyler and went down the slide. Through her eyes we could tell she loved every minute of it.
We went to Spaghetti factory for Chad's moms bday and a guy made her a cute angel princess balloon.
Sometimes a door in her brain opens for a minute. Leah gave us smiles today! Best day ever!
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