Sunday, September 29, 2013

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! 

1 comment:

  1. I pray everyday that Leah can get that oil! What can we do to help, who can we email? Leah is so awesome for fighting so hard, she deserves every chance! Thanks for the updates! Go UTES! Love Leah's shirt and what a great picture!