Emily had her last ACTH shot on Friday. We were so glad to not be giving her shots anymore.
If you look closely you can see all the little marks from over 50 shots :(
Its bittersweet though because since we have stopped the shots her seizures have can back. They are not as bad as before the ACTH and I have heard that sometimes it take s a little while for their little bodies adjust to not being on the steroids. It is just so frustrating to see them again.
So in the meantime we have increased her topamax dose twice. Last night it was increased to her max dose for now and I have not really seen an improvement. She has been smiling more, about once or twice a day. I know that is not much to most but when your baby never smiles every one is so valuable!
Her seizures almost always happen in the very early morning hours, between 2-6am. Its so hard for me to sleep during that time because I am so afraid I won't hear her. The next time she has one I am going to try and record it so you can see it. Her seizures have become so weak that sometimes we just don't know if it is one or not.
I have officially quit working. I had a small daycare in my home. I always wanted to be a stay at home mom but I knew we couldn't afford that so that next best thing was to work from home. Let me just say that going in to this I never thought I would love those kids like I do. I miss them so much!! Two of the kids I watched since they were between 3 and 6 months old and now they are almost 3 and 4 years old. I know this is what I have to do though to be able to take care of my baby.
We are still waiting on the referral to Cincinnati children's hospital. I can't wait to get a 2nd opinion, not that its gonna be a different diagnosis but maybe a new set of eyes will see things differently.