Being a mom to a special needs child has more ups and downs than you could ever imagine. As if it weren't upsetting enough that Tanner has been seizing, uncontrollable, every day for almost 2 years now, his EEG a few weeks ago showed that the type of seizure he's having are spasms and the brain activity is hypsarythmia. Hyps is what he had over a year ago and is very common in CDKL5 kids, but it is very destructive. It creates permanent and irreversible developmental damage. Most children are put on steroids to try and knock it out as quickly as possible, and then put on an anti-seizure med to try and keep the Hyps away. We did this and the steroid did work, but there's always a possibility it will come back and it did in Tanner. When I received this news, I took a day or two to cry it out and was extremely depressed and saddened at what the future may now hold for my sweet boy. I will never give up fighting for him but sometimes you just feel completely helpless and for a split second...hopeless. As a mom, that feeling is one of the worst you could feel.
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.
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.
For those that are familiar with the upsee, we realized Tanner's foot was coming out of the shoe and fixed it :)
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