I am new to group and to CP.

Jana - posted on 04/01/2009 ( 3 moms have responded )

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My son is 5 years old and has just now been diagnosed with CP. He has been sick with colds and ear infections since he was 10 months old when I quit breast feeding. He is deaf in his left ear from ear infections and we are still fighting them. He just recieved his 3rd set. We have started physical and occupational therapy. He is having an MRI in May. I just can't believe I didn't know before now. His body is so weak. He is a great little boy and is so smart. He is already reading books by himself. What do I expect for the future? I am not sure how this will affect him for the rest of his life. Can anyone lend any advice?

3 Comments

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Wendy - posted on 11/23/2009

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my son is 14 now and has had c.p. since four weeks of age. there are many challenges in the future for you but never give up. you will hear alot of things you will not understand or will not like. do alot of research and alot of talking to other people. learn as much as you can andask the professionals any and all questions you may have even if you think they may be stupid. keep your head up, and accept all help.

STARLA - posted on 08/06/2009

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DEAR JANA,

IM SO SORRY ABOUT YOUR SON'S DIAGNOSIS, BUT ITS NOT THE END OF THE WORLD. HE'S JUST MORE SPECIAL NOW THAN HE EVER WAS. I WOULD RECOMMEND GOING TO YOUR LOCAL BOOKSTORE AND LOOK FOR A BOOK TITLED "CEREBRAL PALSY: A COMPLETE GUIDE FOR CAREGIVING." THIS BOOK HAS HELPED ME TREMENDOUSLY.IT GOES FROM BIRTH TO ADULTHOOD. FAIR WARNING, THERE ARE THINGS THAT WILL SCARE YOU, BUT THEY COVER ALL ASPECTS OF CP, MILD TO SEVERE. EVERY CHILD IS DIFFERENT. ANY DOCTOR WORTH HIS DEGREE WILL TELL YOU, THEY CANNOT GUARANTEE YOU ANYTHING. THE BEST THING YOU CAN DO IS LOVE HIM, SUPPORT HIM, AND MAKE SURE HE GETS EVERY ASPECT OF THERAPY THAT HE CAN. MAKE SURE HIS EYES AND EARS ARE ADDRESSED ON A CONTINUAL BASIS.MAKE SURE HIS NUTRITIONAL NEEDS ARE ADDRESSED ALSO. CP CHILDREN BURN CALORIES MUCH FASTER THAN NORMAL CHILDREN. THE MRI WILL GIVE YOU AND YOUR PHYSICIAN A BETTER IDEA OF THE SEVERITYAND TYPE OF CP HE HAS.THIS BOOK ADDRESSES ALL OF THEM . READ IT, BEFORE YOU GO BACK TO THE DR., SO YOU CAN BE ARMED WITH QUESTIONS THAT ARE IMPORTANT.HE WILL BE AS STRONG AND NORMAL AS YOU HELP/MAKE HIM TO BE. LOVING AND SUPPORTING HIM IS THE FIRST STEP.(AFTER THE SHOCK WERS OFF).MY SO WAS DIAGNOSED AT 12 MO. HE'S NOW 2 1/2. HE JUST STARTED CRAWLING NORMALLY IN FEB. I WAS ECSTATIC, ALONG WITH HIS THERAPIST. WE ARE SURE HE WILL WALK ONE DAY, BUT IT WILL NOT HAPPEN IF HE DOESNT GET HIS THERAPIES AND STRONG SUPPORT. THERE IS SO MUCH INVOLVED WITH THIS. IF YOU WOULD LIKE TO CALL ME, I WOULD GLADLY TALK TO YOU IN MORE DETAIL. EMAIL ME BACK AND ILL GIVE YOU MY NUMBERS. BUT GET THIS BOOK.ITS IMPORTANT TO HAVE AROUND. I REFER TO IT ALL THE TIME. MY PRAYERS ARE WITH YOU, STARLA RAKER (starla.raker@yahoo.com)

Holly - posted on 04/14/2009

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Hi Jana.  My son is also 5(almost) and has CP.  We've known longer as he has a more severe case but every child is different and there is so many degrees of CP.  What I try to do is to expect as much out of my son as I do other children.  I expect him to do his best.  I hope you are as happy with therapy as I am.  It's made so much difference.  If you are worried about how CP will affect him long term there is another communty, I think it is called "Moms with CP or with children with CP".  Good luck. 



Holly



 

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