Advocating

My dear friends

As you know my Lila suffers from constant seizures. These unfortunately are getting worse and worse. She will flail her arms and twitch, her little head will snap to the side. Some hurt her and she cries. Can I tell you that nothing in my life could have prepared me for this. Watching my child suffer and not be able to help is the worst possible torture. We have tried so many medications. A lot of which have not very nice side effects. Nothing has worked. You start to feel so desperate, I would do anything to help my daughter. 

There is something out there that is helping other children. Something that is not available for families here in Utah. It's called alepsia. it's an oil that is extracted from the cannabis plant. I know this might make some of you uncomfortable but I'm not advocating medical marijuana. I am advocating an oil that had been specifically engineered to have a higher CBD chemical (or the calming chemical found in marijuana) and a low THC chemical (or the "high" causing chemical) While I don't know if this will be the answer for Lila I know that it may help other families. Just having the hope of something that could help my angel is something to fight for. 

If you would be willing to write your legislator there are instructions below. I would really appreciate it. Please help us help children like Lila. Any relief from her constant seizures would be a blessing. 

Thank you 

Kristi kimball

Thank you so much for agreeing to learn more about Alepsia and how it could possibly benefit Lila. The links listed below in step #4 will give you more detailed information about the medication and research supporting its use.  Please note that we are NOT advocating for medical marijuana, rather we are seeking to change current laws in order for us to be able to have access to this hemp oil which is taken orally and does not cause a high.  

If, after reading the information, you are willing to write a short letter of support to your legislator, follow the steps below. We are working on getting as many letters of support written to each individual legislator bythis Tuesday, February 11 as we have been told that this bill should go to committee either Tuesday orThursday of next week. 

Thank you so much for your help. Please let us know if you have any questions.  

Quinn and Kristi kimball

To email your legislator - 

1. Find the names and email addresses for both your representative and your senator with this map search tool.  (If you have trouble getting this to work please email me back and I will find out your representatives for you).

2. Be sure to place the following statement in the subject line of your message: “I am your constituent, (your name) from (your city). Please vote “YES” on HB105 Plant Extracts Amendments.” They receive hundreds of emails every day, and their assistants often filter the messages for them.

3. Write a personal letter of support; do not use a generic format or form letter. Make it personal. Tell them who you are and why this matters to you. Ask for their support of “Rep. Gage Froerer’s HB 105 Plant Extract Amendments.” Refrain from using the terms “medical marijuana”. We are NOT advocating for that program and we don’t want to create confusion. We use the proper description of the extract: high-CBD/low-THC cannabis extract, or Alepsia.

4. Finally, be sure to include a link to our website, hope4childrenwithepilepsy.com where the legislator can “learn more about the background, research and professional support of Alepsia and Hope 4 Children with Epilepsy.” You can also download and attach our one-page H4CE Lobby Sheet If they would like a packet of more detailed information, you can download our H4CE Press Kit and send it electronically or print it and deliver it to them personally.

Three year old.

Sometimes I forget that Lila  is a three-year-old. She is just so sweet and so different that sometimes I forget to do the normal things with her. But today cuddled up and recovering with an IV in her arm I tried Sesame Street for the first time. She really liked it

Almost

Ruby has been working really hard on trying to get the little star off of the play saucer. She's a little frustrated it's bolted down. 

Cai

This gorgeous little boy is Cai.  He lives in Wales. He has Vici  syndrome. Yesterday I got to talk to his wonderful mom Micaela. We talked for over two hours about our beautiful angel children. It is amazing how much Cai and Lila are alike. It has been so amazing to meet Micaela and her wonderful family. I had not previously met another family whose child was still alive with Vici  syndrome (well, I did meet a family whose child had a variant form) and especially since he is one year older than Lila, I didn't know of any who were older. He has gone through so many of the same experiences that we have. He also has gone through experiences that I believe that we are just starting. It was so great to talk to Micaela and hear what the doctors in the UK are doing for Cai and how that might benefit Lila. It was also fun to hear about his little personality. In some ways he is far less affected then Lila. He even learned how to wave goodbye at school! It is just amazing to me that he and Lila  are considered on the less severe side of the syndrome. I guess it just reminds us how lucky we are to still be able to cuddle our babies. It truly has been a sweet gift to meet this family. 

Home

My little love bug got to come home. She does have another picc line so we will be doing the IV antibiotics from home. But at least we are home.

This stay was very emotional due to the fact that the doctors kept asking us what our plan was for Lila  if there was an emergency. We were asked on several occasions to sign a do not resuscitate order. They went over different scenarios with us on what measures they would use to save her life. It was very hard to think about. I hope that when the time comes for lila to leave me that it can be peaceful and not a A flurry of doctors and machines.  Hard to imagine. 

Ruby was happy to see her sister. As soon as she saw Lila  she grabbed her hand

Face time with daddy.

Ruby is loving face time with her daddy and sister in the hospital. I love her expressions in these photos I snapped while we waited to connect. 

You may have noticed she is sans helmet. It gave her a huge soar! Poor baby. It has to heal and then we will try again. I hate the helmet 

Hospital. Again

My baby is in the hospital again. Being in the hospital is such a stressful situation. Especially right now, not living in our house and needing every extra moment to fix it up so that we can settle in. But the hospital is also beautiful. It reminds me that my little one is still here. Despite all of her complications she's hanging in there and staying with me. It also shows me just how lucky I am for wonderful supportive family and friends. Quinn has been amazing going to work and then quickly running to the hospital to sleepover with Lila. We've had grandparents sit by her and aunts. We are lucky that so many people love Lila and are willing to drop everything to sit with her so that she doesn't have to be alone while I am keeping up breast-feeding baby away from a germy hospital