Thank You for the Prayers - Olivia is home from the hospital!

I ran into my cousin today at a memorial service for our great aunt Verona and she asked me for an update on Olivia. I realized I left you hanging ----- I am so sorry I have not updated you sooner. After our 10 day stay, we arrived home just before Memorial Day Weekend. In between catching up from being gone and my younger daughter slamming her thumb in the car door (2 hour ER visit)---- and of course the last week of school ----- I haven't had a chance to sit down and write. The good news is  ----- she caught the last week of school (not happy to have her picture taken though):

Although we are still in recovery mode. I was excited to meet with a new type of specialist --- a Genetics Doctor who specializes in Pharmacogenetic testing. He explained to me that Olivia probably lacks the enzymes necessary to breakdown the Keppra medication properly. This makes complete sense in her case. Instead of reacting to the medication negatively immediately, it took several months for the toxic effects to build --- little by little everyday.

In the hospital they decreased the Keppra by a large amount and after adjusting to this major change she has stabilized and is gaining more and more strength everyday. Each week, I have been instructed to decrease the Keppra until she is completely weaned off. 

I am SO thankful for the Medicinal Cannabis! It has been keeping her stable and we are back to the seizure-free weeks --- the only time she has had one (just one!!!) was 3-5 days after I decreased the medication. For now, we are not putting her on another medication (against the neurologists advice), but in our opinion, medications typically cause more problems then benefits for her. We would like to see how she fares with the Medicinal Cannabis on it's own.

In other news, we have received the results from the metabolic testing and everything has been coming out normal. Our next step would be a Whole Exome Sequencing which I believe looks at 32,000 genes. 

I have so much more to say! I have been working on a separate post. I am grateful for you and your prayers. They mean the world to me!

xoxo