I want to take the time to explain what is really happening to Maddie right now. Infantile Spasms sounds fairly mild as a seizure type, but it’s name in no way accurately describes the effect these seizures have on the brain. Maddie currently has over 100 seizures every day. She wakes up every hour all night, with a seizure at least every two hours during the night. She can no longer walk unassisted. It’s not that her walking is suffering; she has seizures that make her fall down. And they come with no warning, throwing her down to the ground hard. Our Neurologist suggested it is time we get her a helmet. I wanted to suggest it is time he figures out how to stop the &”?*%~# seizures. But we don’t seem to be any closer to stopping them; they have actually gotten worse over the last two weeks. Instead of a helmet, we bought “walking wings” which are used to help a child learn to walk. It has a big strap around her chest with two longer handles that I hold onto behind her. This way when she starts to fall we can catch her before she hits the ground. This is not ideal, but it is the only safe way to let her walk.
I am trying to come to terms with Maddie’s diagnosis and what it means for her future. I know I have said this before, but cancer was a much easier thing for me to accept. There are just two outcomes, survival or death. And I knew how long the treatment was. I guess there is really a third outcome I had not considered, survival – but with lifelong health problems caused by her cancer treatment. Of course, any way she survives is better than the alternative. I selfishly want my child with me no matter what. And I will do anything and everything I can to help her lead a happy and healthy life.
But to watch your child regress and lose skills she once had is the most difficult thing we have endured during this whole journey, other than watching her in extreme physical pain. She is as loving and cuddly and interactive with me as she has always been, but her behavior is less mature and independent than it was 6 months ago. Her speech has regressed as have her motor skills. And if we don’t stop these seizures soon, it may get worse than this.
We are just getting started with the Early Intervention stuff, and I am sure it will help us work on the things she needs help with. I am learning so much from other parents of Special Needs kids, especially those whose kids have had IS too. For awhile, I was in denial that our child would too be a “special needs” child. I just didn’t want that for our child. I know that no parent does. But that doesn’t change how much I am going to love my child. It just takes an adjustment in thinking about what I want for her in life. And I will never get rid of those lofty goals either, I just may need to concentrate a little more on much smaller milestones for right now.
I have added some links to other IS kids’ sites and to more info about IS. I still have hope that we will get the seizures under control at some point, but the damage being done by them every day is very real, and I don’t know what it will mean for her in the longterm.
So I guess this post is a little less positive than most of mine, but this is our reality right now. My days are spent counting seizures and praying for a few more minutes in between. And, oh yeah, we also need to make sure she stays cancer free.
To end on a good note though, I added some new pictures of Maddie from this month.
I actually was unsure whether or not to post pictures, because in them she looks so normal. But there is nothing normal about having over 100 seizures a day. But I could not not share just how beautiful she is!
Love to everyone,
Liz, Brandon, and Maddie