I have been trying to write this post for a few weeks now. Every time I go to write, I can't do it. I just have to get it over with and write.
Ailyn was diagnosed with Cerebral Palsy. I knew this was possible and I am the one who was pushing for a diagnoses. But, even with knowing when I heard the doctors words telling me she has cerebral palsy, it hurt. It hurt because I hate that Ailyn has to fight for everything. I hate that now she will have to fight all her life. I hate that our life is full of therapies and doctor appointments.
After a few weeks of worry and stress about the future, I can finally say I am ready to talk it out. Ailyn is such a happy kid, always smiling. Just seeing her loving life despite her handicap makes me realize she will be OK.
We don't know what type of CP she has. She falls under a few of them actually. The most affected is her balance. Although, it's getting better with more therapy she still can't balance on her own for more than 15 seconds. She has some low tone in her trunk and some high tone in her ankles. The" good" thing about CP is it will never get worse. Her issues today are what she will always have. With therapy she can learn how to control herself.
As far as walking, she is not yet. BUT, SHE TOOK TWO STEPS yesterday!!! I was so happy to see this. It means she CAN do it and WILL. With all Ailyn's milestones she has to learn to coordinate herself. Her movements look so unorganized until she learns the milestone. Once she gets the movement down, her brain remembers it and she has no problems. Not sure if I explained that so you could understand..... you have to see Ailyn to "get it".
With the CP diagnose we were able to get more speech. So she gets speech twice a week. She is still very much speech delayed. And, uses signs to communicate over words. She has about 10 words and over 20 signs.
Feeding is still a huge issue. In the past week she has been doing very well and even had a good weight check. I had her reevaluated with the feeding program. I'm hoping the CP diagnose will help insurance cover more of the feeding clinic. We are also waiting to have an evaluation with an OT feeding therapist.
I'm trying to be positive about all of this. I know she is getting all the help she can right now. Our schedule is jammed pack every day. I see improvement with all her therapies so this helps to keeps me positive.
THANK YOU for all your support. It means so much to me!
