About a month ago Grayden came down with the virus croup. He was very sick and while he was sick he started chewing on his tongue. I remember my husband saying to me, " What is that he's doing with his tongue?" Thinking nothing about it I replied and said he just found his tongue. Our little Grayden is globally developmentally delayed which means he is developmentally delayed in all aspects of development. So, around our house we get super excited about new things Grayden can do and I was so happy he was doing something new by discovering his tongue.
A couple weeks later I was mentioning to Graydens developmental teacher, physical therapist and occupational therapist that Grayden stopped babbling and has now discovered his tongue by chewing on it. They also were pleased. I also mentioned to that he has regressed and was not using his hands and transferring toys like he used to. He has been doing so well with sitting and head control they said that sometimes kids regress in areas when you focus on one area too much.
Then a week later while I was holding him his head would just drop forward and his eyes would roll back into his head for a second or two then he would pick his head up again. This would continue a few times then stop. I just figured because of Graydens low muscle tone he was getting tired of holding his head up. As time went on this was happening more frequently and I was getting concerned. At his next therapy appointment I asked his p.t. what she thought about his head dropping. She stated that this behavior sounds like he is having seizures.
He was in fact having seizures. We knew he might have seizures but it still doesn't make it any easier to see your baby gradually lose all his milestones. This type of seizure he is having is called an infantile spasm. This type doesn't look like the classic scary grandmal seizure but it is in fact very scary and attacks the brain tremendously. They come in clusters and don't typically look like anything. This type goes undetected for a long time and parents don't usually find out until their baby starts regressing developmentally. In our case, Grayden has regressed a lot and might not ever meet these milestones again.
My heart is broken because I want to fix my Grayden and I can't fix him. I so wish I could take his place. I am worried for his future and wonder if he will ever use his hands again. His doctor said only sometimes these babies get back to how they once were. I miss his little laughs and smiles he gives us all everyday. Right now he's not doing this much and hardly making eye contact. Every time I see him seizing I wish I could magically take them away but I can't and feel his little brain cells are depleting by the millisecond. I wonder if I had only asked his doctor what he thought about Grayden chewing on his tongue, then we wouldn't be where we are today. And his seizures would be under control. And he wouldn't have regressed as much as he did. But that's not the case.
Here we are back at the hospital again tonight. Grayden is being watched as he has been sleeping constantly for the past week and is possibly dehydrated. As I sit here watching my sweet baby boy sleep I pray that Graydens seizures would disappear and we can go back home to our family. We miss them.
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