Saturday, September 1, 2007

A little more about - Kaylynne Electa

A.K.A. Kay, Baby Bit, Lover Baby, Sister.

She is named after her Great - Grandmother Electa who was killed in a car accident before baby Kay was born. We think they have met though because we say Great - Grandma picked out a very special angel and sent her to us as a gift. She is a joy and a wonderfully sweet and pretty baby.

We never thought we would have her because she got off to such a rough start but she is a very tough fighter. While I was pregnant with her I started bleeding and because it was early on and it was so much the doctors told me I was probably having a miscarriage. We weren't ready to give up that easily. Kaylynne held on and kept growing and getting stronger. We were OK for a while then the bleeding started again around 3 months into the pregnancy. The doctor put me on bed rest for several months.

We made it through many other complications and finally had our beautiful baby girl. She had some trouble at first and was put in the special care nursery (one step down from the NICU). She had problems with her blood sugar levels and a severe club foot but otherwise no other health concerns were found.

Once we got home she developed typically but we did notice she took a little longer to reach gross motor milestones than her brothers had. She did everything eventually though and her fine motor skills were amazing. She started signing too. We weren't too concerned until we noticed that she would not support any weight on her legs.

The doctor thought she might have hip dysplasia (we have a family history) but x -rays ruled that out. She started receiving physical therapy through early intervention services. Her feet are very pronated and she was standing on her navicular bone. She was fitted for bilateral SMOs at age 16 months. She loves them and brings them to me to put on her in the mornings.

When we went to see the pediatric orthopedic doctor he very calmly said "So has anyone mentioned to you that she has cerebral palsy?" WHAT? We were shocked and not because of the reasons you would expect. We knew we could handle it and that we love her just the way she is so no diagnosis would change that. We already knew what the diagnosis meant so it wasn't quite as frightening. We work around children with cerebral palsy all the time. Her grandmother is a special education teacher. We were shocked because we thought he can't be right, we would have known. We would have recognized it.

A few days later after the shock wore off and I started doing some research I realized it could be true. We met with her pediatrician who happens to be a CP specialist and she confirmed it. She said it is so mild they couldn't be sure at first but they suspect she has mild hypotonic (low tone) CP. She is very flexible and loosey goosey as opposed to (high tone) tight and stiff. Now she gets 1 hour of PT a week and is still wearing her SMOs whenever she is awake.

She is a very happy baby and she is starting to sign lots of words. She has taken some steps but is still very cautious. She will get there in her own time and she has lots of people who care about her to help her along the way. People who know us say she couldn't have come to a better family because we already have some experience with children who have disabilities so we knew just what to do. I think that is the way the world works. You are given what you can handle. Sometimes you may think "how did this happen to me?" Some things in our lives have made us think "why me?" but not this. We feel very blessed to have the family we have. We are so lucky that we were chosen to have this special little girl and we will do anything for her.

I found this little snippet of a poem on a friend's blog and just felt it belonged here.

You are a child of the universe,
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Cameron took this picture of her.

Kay watching her friend Rachel. I think she remembers meeting Rachel when she was a baby because seeing Rachel and hearing her sing always makes her happy. Even if she is crying she will stop to watch.
Yes, I know Bob Barker is old enough to be her great grandfather but she has a huge crush on him. She loves to watch him on the price is right. We are trying to get her accustomed to Drew Carey so she won't be too shocked when he takes over.

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