Hello family, friends and fellow fighters,
Today’s post is just going to be a quick update on Nova and Denver. Since taking Nova off of Diacomit last month, we have noticed her speech picking up so much. She is starting to use phrases to connect her feelings- example: she likes to wipe her hands and say “nasty.” It makes her giggle. Pop-Pop asked how she was feeling, and she said “nasty.” She is starting to say, “Let’s go!” when we ask her to come here. She is doing such a great job. Her behavioral issues as far as head banging and hair pulling have been SOOOOO much better. She still gets frustrated, but most of the time isn’t harming herself like she was before. Over the last 3 months, Nova’s seizures have increased significantly. I think part of that is her age and growing, and I just remembered a few days ago when she started Diacomit we had to half her Fintepla dose. Since coming off Diacomit, we never increased. We are seeing their new doctor next week, so I’m hopeful we can adjust that and hopefully that will help at least a bit.
Around the same time Nova weaned Diacomit, Denver started Epidiolex- and I’m cautious to say, but since then we have been *big seizure* free. I know that won’t last forever, but getting longer stretches in has been good for her to be able to have a break. Unfortunately, she’s at the same time started having about an hour every night of atonic and focal seizures. So, you win some- you lose some. Little Denney has been standing so much more and doing so much more confidently. She still won’t stand independently yet, but she is starting to try one hand holding on to things instead of a two-fist death grip. She is also gaining more confidence in putting up against her big sister-hahaha. Fights are no longer one sided- Denver stands her ground when she wants to.
Dravet is a constant cycle of up and downs. It’s an everchanging battle. This is our current state- and that could very easily all change tomorrow. No matter what, we keep fighting with and for these girls every day. Thank you for fighting with us. Dravet families- if you EVER need to reach out, whether that’s for a listening ear or another parent’s opinion- feel free to click on our Instagram on the homepage and send me a DM. We are in this together.
“Be strong and courageous. Do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9
Keep Fighting,
Addi Epilepsymama
