Thursday, October 9, 2008

Really?



I heard some words at Finleigh's pediatrician's appointment this week that I never expected to hear.

Cerebral Palsy

It wasn't a diagnosis, but it was a warning that this could be what some doctors may diagnose her with in the future as we try to get into some new specialists in the big city and try to get some answers. And it could also be what it is.

Those two words scared me.

A lot.

As I research it on the web, I'm finding that it certainly seems to fit. The feeding difficulties, the delayed motor development, the talking issues, her muscle tone that is mentioned by every doctor and therapist we've come into contact with, the possibility that she could have been deprived of oxygen before she was born because my placenta had hardened.

The first thing I read about cerebral palsy said:

All children with cerebral palsy have damage to the area of the brain that controls muscle tone. As a result, they may have increased muscle tone, reduced muscle tone, or a combination of the two (fluctuating tone). Which parts of their bodies are affected by the abnormal muscle tone depends upon where the brain damage occurs.


Just the other day, her physiotherapist told me she had fluctuating muscle tone. Interesting.

Cerebral palsy is a term used to describe a group of chronic conditions affecting body movements and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development, or during infancy. It can also occur before, during or shortly following birth.

It can range from severe to barely noticeable. Finleigh would obviously be on the more mild side.
It doesn't change anything.

Or does it?

After we got home, I found myself treating her a little more gently than normal. I had to stop myself because I don't think that's the way to go. Just because we might have a name doesn't change who she is or what she's doing right now. A name, 2 little words, should not change anything.

Part of me would love to FINALLY have a name. A way to describe things to people. A classification.

Part of me does not want my child to be labeled and would hate for a name to her condition to hold her back as she grows up.

Part of me does not want to have a child with CP.

Part of me wants to embrace it, move on and do everything we can to give her as normal and productive life as possible.

Part of me just wants to go to bed. Or eat excessive amounts of chocolate. Or drink lots of wine.

Part of me is barely phased at all.

I have a lot of parts, I guess.

So, there you have it folks...the latest in the Finny saga.

We won't know anything definite for months and months yet and in the meantime, we'll continue cheering her on as she continues to develop and grow.

6 comments:

  1. when do you get to the point in the weight loss saga where part of you wants to go for a run or do pushups! :-) I'm with you...stress makes me want to hide in bed or eat chocolate or drink or maybe all of the above together!

    anyway, i will just keep praying that the doctors have wisdom and you will have peace and Finny will not even notice that there is a saga!

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  2. I agree with Natalie.

    That is potentially big news, while at the same time - it doesn't change HER at all. I will pray for the doctors and for Finleigh too. (and for you!)

    p.s. DON'T DO THE CHOCOLATE OR WINE! It seriously won't make you feel better, and ultimately, it'll just make you feel worse. Really.

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  3. Finally having a name changes nothing and everything all at the same time. When you are in conflict, just look at that beautiful face and think of all the joy she brings to your family every day. She will be your strength.

    Next.... put down the chocolate and step away from the wine. You will only regret it later.

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  4. a name for her collection of issues, doesn't change who she is, or has been to you, since you first held her.

    it gives the doctors and her support system a foundation to refer to in order to continue helping Finny be the best Finny she can be:)

    and, it stops the question that whispers in your ear at the most illogical times "what's wrong with her? what IS it??"

    hugs honey..wish i could give you more. .

    xo

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  5. oh honey, how did I miss this post????? I TOTALLY understand. I felt exactly the same with with Aiden's potential "Asperger's/Autism" diagnosis. I get it. My eyes are filled with tears for you.

    I love you. I love that baby girl of yours even though I have never met her.

    I wish we lived closer. Sigh.

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  6. Oh Amanda, that would be difficult. Hugs to you. And prayers for you as you deal with this potential diagnosis.

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