HoHoHo! We are kicking off blogmas with a classic Warrior Princesses post. Today we are just going to update on Novie and Denver.
Nova has been doing SO WELL on Depakote/Valproic Acid. She went from debilitating myoclonus 2-3 hours a day to having less than 30 minutes of it a day, AND it isn’t clustering like before! We have labs next Tuesday so hopefully things are still going well. She has been able to talk more with this freedom and oddly has been eating SO much better! Not sure if there is a correlation with her appetite, but wow! It has been such a relief to see her eat again. She’s not only eating more but she is eating more variety too. We were so close to finally giving in on a G-tube, and here she is- fighting like a champ! Nova has also been sneaking into bed with Denver in the middle of the night some nights, it is precious. We got her an acrylic mirror for above her play couch and she has been acting out shows in front of it. It is amazing the leaps and bounds she has moved in her speech as well as her confidence this year.
Now, I started you off with the good news. Denver has been really struggling since lowering her Clobazam/Onfi dose. Pretty much everyday after 2/3 PM she is having head drops. Thankfully they typically don’t cluster, but it’s such a big increase from where we were a month ago. However, she is almost 4 months without a tonic clonic! I know this is typically easily to celebrate, but it is definitely hard knowing it won’t last forever. Denney still isnt walking yet, but she has been letting us walk with her holding our hands which is a huge improvement!
I am so thankful things are looking up for now. It was hard seeing Nova struggle so hard just to exist. We have already done some fun Christmas crafts and we are planning on doing as many fun things with the girls this month as their bodies allow! Make sure you’re keeping an eye on our Tik-Tok to see what we do!
I am forever thankful for everyone that supports and loves on our girls. You all mean so much to me.
Addi Epilepsymama
