I turned to the CDKL5 support group we are a part of on facebook and expressed my feelings. I was partially venting and partially asking for any and all help/advise on where to go from here. What I got in return were phone calls, emails and responses in not just support from people who really did understand me, but HOPE. I heard real life stories from parents stating their child is older than mine and HAS progressed and also still has spasms and hyps. No matter how small the progression was, progress is progress!
We still have options. We have a lot of options actually! So once again, with thanks to my CDKL5 family, hope prevailed. I guess I'm allowed to ride on the roller coaster of life, thru this journey, because I can't control it sometimes, but something truly amazing happened this weekend. I found my hope. Brian and I discussed our options, we made some medicinal changes and just like that, a glimpse of our happy boy appeared. It's so hard to answer the question of "How is Tanner doing". I wouldn't say that he's any better or any worse than he has been over the past month, but you can't tell me that progression is not possible when this kid who used to roll all over the place, suddenly came to a stop due to the amount of seizures, but has been picking it back up, just like that. He "speaks" to the sun every time he sees it. And he's been "talking" to us so much that his throat has got to hurt! We walked in our upsee and tonight he spent at least 20 minutes rolling back and forth and back and forth, like in the video below. We love our baby boy so much and will NEVER give up hope. Where there's hope, there IS a cure.