Physical Therapy and other things

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 :)

Infant Attachment

 A friend has inquired about infant attachment issues related to adoption and I wanted to share my thoughts. The surprising thing is it isn't instant. I can't tell you how many people say "it was an instant attachment right away, right?" You feel a mother's love instantly and you would do anything to protect that child. Attachment takes more time. Our Homestudy social worker, instructed us to take a couple days to bond with the baby before the family comes to visit. We picked her up on Saturday and no family came to visit till Tuesday. Then for about 2 weeks straight we had visitors. After they all left it was just me and Kara while Matt worked. I felt very much like I was floundering. I didn't know what she wanted when she cried. I didn't know what to do when she wouldn't sleep. I knew that I loved her but that was about the only thing I was sure about. As I spent more time with her, I learned what her cries meant. I learned what she needed when. I started to build that connection. I knew I could take care of her and she trusted me to do it. It took a good week of just the two of us to attach. Matt took a little longer. He was at work all day so he only had the evenings to build that connection. The first couple weeks I could tell he didn't know what to do and I did. I realized though if I took care of her every time she got upset he wouldn't build that connection. That is where the mother needs to step back and let daddy figure it out. That is when they connected.
The only other thing I would say for adopting an infant is something my mother-in-law told me. Don't be afraid to hold the baby. A friend of hers had adopted two infants. She said the only thing she would have done different was to hold them more. They had severe separation anxiety, and holding them would have made a difference.

Good News

Kara has some good news to share with everyone. We were at Dr.Troup's office yesterday. First of all, her head has stopped growing. That is great news because it means the shunt is doing its job and she will finally grow into her noggin (as the doctor put it). Second of all, her EEG results were completely normal. That means no seizures or any irregularities. We do have a problem with her stiffening up her little body and grunting which was concerning and led to the EEG. When I explained it to Dr.Troup, he said it sounds more like Acid Reflux. She has already been diagnosed with it to explain all the spitting up. I am going to mention it to her pediatrician to see if she can get some relief. Acid Reflux is a lot easier to deal with than seizures though. Thank you to everyone one who has been praying for her. She is healthy and happy and such a little miracle. We are so blessed!