When you hear special needs something comes to mind. It is different for everyone. I want to help clarify Kara's form of special needs. We were informed before we got her that Kara had Hydrocephalus and Dandy Walker Syndrome. We hadn't heard of either of those things and we had no idea what either of those things were. The internet wasn't the greatest place to get our information we discovered quickly. When we sat down with the doctor he first explained Hydrocephalus. Now I will explain it here: Hydrocephalus is water on the brain, or more accurately spinal fluid on the brain. Her body produces excess spinal fluid which puts pressure on the brain. Left untreated it could have very damaging effects. Kara had a shunt put in the week she was born. Complications come in when the shunt quits working or becomes infected. Kara's shunt wasn't allowing enough fluid to flow so in October she had the shunt revised. Then she got an infection in her spinal fluid and we had to do a whole replacement. Since then it has been working fine. As long as her shunt continues to work, she will have it for her whole lifetime.
Now Dandy Walker Syndrome. Dandy Walker Syndrome involves the Vermis in the back of the brain. Dr.Troup (Kara's neurosurgeon) told us that he could cut our Vermis out and it wouldn't make a difference. The job of the Vermis is to help make connections in the brain. It also helps with balance and such things. We asked him if we could tell how challenged she would be. He couldn't tell us. He said you could take two identical cat scans and one of them would be severely disabled the other the top of the class. There is no way to know until they start meeting milestones. So this is where we started to realize we were taking a risk. It didn't matter though we love Kara the way she is.
So now I want to explain what we have done to help her reach her potential. We got connected with Babynet when she was 3 months old. The are essentially free program, they bill our insurance and whatever the insurance doesn't pay Babynet pays. Virginia, our early interventionist, comes to our house once a week. Kara loves her because she knows she is coming to play. Virginia is our overseer kind of. She is watching and seeing the areas Kara needs assistance in. The plainly obvious one was her Gross Motor Skills. Virginia's job then was to get her hooked up with a physical therapist. Our Physical Therapist is Beth, and I love her. She has done wonders with Kara. Beth comes to our home every Friday and she works with Kara on sitting up, rolling over, and putting pressure on her legs. Kara has made wonderful strides since Beth came into our lives. She sets goals and gives us practical exercises to help get Kara where we want her to be.
Kara had an assessment last week. The categories were Person Social, Self-Help, Cognition, Communication, Fine Motor, and Gross Motor. Any child her age tested may be behind a little here or a little there as Kara was. To stay in Babynet she had to have at least a 16% deficiency in a category. The only one that had a deficiency over was Gross Motor Skills. The cause for that was the large size of her head. We were overjoyed to see that. As I said in a previous post, the doctor said she is growing into that "noggin" of hers now. Which will make her gross motor skills improve.
So cognitively she is doing great. I know I used to think "special needs" always meant severely handicapped. I learned that it doesn't mean that. In our case it is the sweetest, happiest baby, who just needs a little help to reach her potential. I have no doubt that she will do great things for God!
I am always open to questions if you have any :)
No comments:
Post a Comment