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Old 11-28-2012, 04:14 PM   #1
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Location: Colchester, VT USA
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Cuna HB User
2 1/2yr old with cp - pls share ur experience

Hi there,

We have 2 1/2 yr old who was diagnosed with cp last October.
She is not walking yet. She crawls commando style and can sit alone falling sometimes on her right side (affected side). This summer we did cp program in Toronto with health in motion folks and that is where she learned to sit and relearned to roll. She receives 2x per week ot and pt. we are to start speech soon. We do 2x per week 1 hr pool time.
Anyways, when you look at her you would never say that she has cp. Her motor skills were affected only and her lower extremities are tight. She is very bright and bilingual but she has not started talking a lot. We are trying to learn some sign until she starts talking.

We live in USA, Vermont and health folks here are not so informed about cp. there is no specialized cp ot or pt and many times I have to be the one in charge of program. We dismissed our early intervention team as they have done nothing but asked to meet with us all of the time in our house and talk about our goals for her. Like I had time to spare. I just learned today that they never applied for her Katie Bucket benefits. I was told they will. Grrrr

We did find nice pedi just recently who was recommended to us and they have grat care coordinator. We are lucky that our state has insurance program for kids like her but we just have to learn how to work it.

Anyway, we are still trying to understand this so please share with us your story b/c we have not met many parents (1 only) and would love to hear from others.
Take care and God bless!

 
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Old 01-10-2013, 05:24 AM   #2
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Join Date: Jan 2013
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Smile Re: 2 1/2yr old with cp - pls share ur experience

Cuna,

We too have a cp child. He is 5 1/2. He is my step son actually. We just gained custody of him full time recently. He started staying with us full time in June. He has also previously been diagnosed with "failure to thrive". Since recieving him in June, he has gained and maintained 5 pounds. He no longer fits that criteria thank goodness... but we have to maintain his current BMI in order to shed that diagnosis. At the time we picked him up... his movement was limited to rolling over periodically and spastic movements with his hands. Since then, he has learned that he can get all around the living room by rolling, flipping, and scooting. He does not currently sit up on his own. For a long time, he was unable to hold his head up on his own. This is also something we have accomplished this past year. He is only recieving PT and OT once a week outpatient, however, he goes to school 5 days a week at our local public school and they do PT and OT there. So technically it's twice a week I guess. I am very interested in the CP program you mentioned. Especially if your little darling learned to sit while there. That would be AMAZING!!! We don't have any support groups in our area (Gainesville, FL). Even though we have a wonderful hospital.... with great specialists... we are kind of left squandering around. I finally bought him a recliner that I then fitted with a gait belt and he loves it. Right now, our biggest problem is he chews on his fingers, creating sores on his fingers from time to time, and the most horrible redness under his mouth from all the excessive salivia that he is creating. I've tried so many things to deter him from doing this. OT suggested different teethers (he still uses a pacifier), however, he doesn't hold things in his hand so I would have to stand with him and hold it in his mouth. At this point... I just give him a blanket or towel to "hold" and hope he chews that instead. LOL.

If you're interested I'd love to stay in touch.

Angie

 
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