A loop of seizures/updates!

On Tuesday around 5:00 Leah started having really bad screaming seizures. Usually she has one and then goes to sleep and then wakes up okay or maybe has one more and then she is done with these bad ones for a day or two. But this time she got into a loop and didn't come out of it for about 18 hours. She does this every so often when she is getting sick, growing teeth or just having some kind of change in her body. It's so scary and I never know when she will pull out of the loop. Usually kids with epilepsy will receive a rescue medication when this happens. But these meds don't work for Leah. Dr. Filloux has us give an extra dose of pheno and sometimes she pulls out and sometimes she doesn't. I get very upset when the loop happens. I get very anxious and I cry a lot!! Chad always reassures me that she will pull out of it. Finally at noon on Wednesday she pulled out of it! I just love and kiss her for hours and hours and tell her how much she scared me and to never scare me like that again! Here's a pic of her right when she came out of the loop. Looking pretty good for what she just went through!

Leah woke up crying this morning! When I heard her cry I anxiously ran into her room...feeling scared and excited at the same time. When I got there she was like a healthy baby crying for her mom and dad to come get her. Here is a video of her crying. Such a sweet sound! We haven't heard her cry for months!

Here is a pic of me and Leah wearing our U of U gear! Cheering on our Utes is such a big stress reliever in our house. We are BIG U of U fans. Also, rocking out to music and dancing in my family room relieves my stress and completely embarrasses my kids!

I am so grateful for all the woman who are working so hard to get CBD oil legalized. "Hope 4 children with epilepsy" have a Facebook page that they continue to update the progress of getting our children CBD oil. Amazing things are happening daily! I hope to do my part to help bring the oil to our children in Utah. I continue to hope and pray that Leah will get the opportunity to be treated with CBD oil. 

We will never give up on Leah! We will always continue to find a treatment to help her. She has some kick ass parents (sorry about the bad language). We will always search and search and search for a treatment. This disorder and trial will never beat us. 

Here is a picture of my beautiful baby girl! There is a reason why she is here. There's a reason why she is still alive today! She is a fighter! She deserves a chance! 

CBD oil to treat Leah's seizures!

We continue the hope for Leah. As I watch her seize 5-10 times a day right now I ache for the opportunity for her to be treated with CBD oil. It is truly a miracle to see these children who are treated with CBD get their life back! We pray that Leah will one day get a chance to try the oil and see if it stops her seizures. The heart ache of watching her horrible seizures never goes away. She needs to have her seizures go away. I am afraid she won't survive long with this life! We are in desperation and this oil brings us hope. We hear her seize all night and we hold our breath every time we go in and check on her and also when we get her in the mornings.  Her seizures are really bad right now. She goes blue and has labored breathing during and after her seizures. I am posting a video of her seizing. I feel it's important to document her life. That's why I have this blog. This video is hard to watch!

 

Leah's visit to the Deaf and Blind School in Ogden was awesome. We learned so much! Here's a pic of Leah getting therapy.

Here is also a pic of my kids with Leah! They love her so much!

Here is another pic of Ty and Leah cuddling! Every day he tells me to give him his cuddle buddy! They cuddle every morning and this day he fell asleep (She looks a little freaked out).

This next one is Leah's physical therapist Susan. They have such a special connection!

Hope for Leah!

My goal is to get Leah's story out there! We have so many thoughts scrambling through our heads on a 24 hour basis on how we can help Leah and these other children with severe epilepsy. We need the public to know of this devastating condition that Leah and many children and their families are battling every single day.

We are going to be fighting for CBD to be legalized in Utah! Please educate yourself and others around you about CBD and how it is helping seizure kids. Please watch this video and share it with others: (if you can't view this video please go to youtube and type in- Charlotte's web and Zaki's journey)

I would do anything to help our Leah and to get her life back.  Leah has a metabolic condition similar to Dravet Syndrome. They actually thought for many months that Leah had Dravet Syndrome. These metabolic disorders cause severe epilepsy that cannot be controlled by seizure medication. We have nothing else! The doctors have nothing to help Leah! We continue to watch her seize daily and become more and more catatonic! We need to see if CBD would stop Leah's seizures.

WE WILL NEVER GIVE UP!!!

Leah is 2 years old!

Our Leah turned two years old on August 8th! We can't believe it! The past two years really flew by but also went really slow at times. We remember a time when we couldn't wait until she turned two years old because we had heard that some children with neurological problem grow out of it by the age of two. Unfortunately, this is not the case for Leah. She has a metabolic condition that causes neurological problems. Anyway, it really was a great day! She gave awesome smiles in the morning! We spoiled her with lots of new therapy toys. One special moment was Tyler's prayer that day (he really loves praying) he said in his prayer: "Please bless that Leah can talk and walk when she is two and that she can sing to me". Oh how I love that little boy!

Leah on her birthday!

Time to catch up! For those following I apologize for the long break between posts. Summer with four kids kicked my butt!  Busy, busy, busy!!! I wrote down somethings that happened I hope I don't forget to share them all.

Leah's condition at the moment is fair! She isn't worse and she isn't better! She continues to seize about three to ten times a day, depending on if she has a fever, teething (which is happening at the moment) or frankly for reasons we will never know. She is still on Phenobarbital and we are in the process of adding more Phenobarbital, trying a new drug or doing both. We have got to slow down these seizures!

Good news: She has FINALLY gained weight, She is almost twenty pounds! I seriously never thought the day would come. She doesn't have crazy chicken legs anymore thanks to not as much vomiting! I no longer use her pump to feed her anymore, I syringe feed her everyday. I burp her constantly now and it as made a huge difference! Because of all this she has finally gained weight she looks so healthy now. She also has so much more hair, she looks like a little girl now!

Preschool...yes I said preschool Leah will be going to preschool next year...crazy!!! Becca, her therapist wants her to go to a couple special classes a week and get her use to getting out of the house and going to a class room environment. This really is hard for me to even comprehend! My baby will leave me a couple times a week. When you have a child like Leah it's hard to believe that other people besides family can take care of her. The minute Becca talked to me about this I totally balled my eyes out. One reason was because I didn't want to send her off to school and another because in a year Becca won't be her therapist anymore. Becca only works with kids ages 0-3. I was crying telling her I would have never had made it through these past years without her. There were many times she would come and Leah would've just had a seizure and fell asleep so we just talked. She literally was my therapist in this sense. I was so lost and so sad! She helped me in so many ways. I could never repay her! So the thought of us moving forward without her just puts me in tears. She then informed me that there's no way we are ever going to say goodbye. She continued to tell me that we are a part of her life and that we will be getting together for lunch and play dates at the park. So yes, Leah is going to be going to a special eye therapy class on Friday's starting this next month and she will also be going to other classes sometime this fall or early winter. I don't know about this growing up thing!

We attended a special eye center in Ogden this past Saturday. It's a place where they teach us all about Leah's eye condition and teach us ways to help her. They are also talking to my kids about having a sibling with a disability and ways they can help Leah They will also be doing a lot activities with her and with my other kids.

Leah's new nutritionist is so great. Her name is Patrice and she has helped us a lot in nutritional ways but also gave us a contact for a doctor in Washington who studies the gene GRIN2A. He wrote up an amazing article on this gene. You can read it here:
http://www.washington.edu/news/2013/08/12/progress-made-in-linking-some-forms-of-epilepsy-to-genetics/?utm_source=rss&utm_medium=rss&utm_campaign=progress-made-in-linking-some-forms-of-epilepsy-to-genetics
This article explains so much about Leah's condition. Now I know why her speech is gone. This horrible disease takes their speech away.  Patrice also gave us his email address. We sent him an email explaining Leah and wondering if he could help give us more information about this gene or if he could help Leah. We hope to hear from him soon.

During the summer Leah had some pretty incredible moments. She sat in her special chair and I propped her arms up and put an old See 'n' say toy Old McDonald toy in front of her and showed her how to push it. She would move her hand and make this toy work. It was amazing! It put us all in tears and many other friends and family in tears when they came over and watched her do this. I will never forget that moment! When she hasn't seized she shows us wonderful progress. This only confirms that Leah is in there.

IF ONLY WE COULD JUST GET HER OUT!!!