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Old 10-13-2010, 06:05 PM   #1
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shannon48183 HB User
Cool 15 month old baby girl diagnosed with spastic quadriplegia!

To our amazement Janna can talk, eat, reach, think, respond, and doing so many things the doctors said she would never do. Her legs and right arm seem to be fine due to continuous pt and ot. She is smarter than any baby I have ever met, and I am not just saying cause she is mine. She struggles with her hands when she gets excited. She is just now starting to crawl. She fed herself with a spoon for the first time last week. She is so full of life and she has such a personality. When her drs see her all they can say is what a miracle she is. So there is hope out there. Prayer and strength are the only way to get through these challenging times. Anyone have a baby with the same diagnosis that can share experiences with?

Last edited by shannon48183; 10-13-2010 at 06:07 PM. Reason: tags

 
Old 11-06-2010, 09:03 PM   #2
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Re: 15 month old baby girl diagnosed with spastic quadriplegia!

Quote:
Originally Posted by shannon48183 View Post
To our amazement Janna can talk, eat, reach, think, respond, and doing so many things the doctors said she would never do. Her legs and right arm seem to be fine due to continuous pt and ot. She is smarter than any baby I have ever met, and I am not just saying cause she is mine. She struggles with her hands when she gets excited. She is just now starting to crawl. She fed herself with a spoon for the first time last week. She is so full of life and she has such a personality. When her drs see her all they can say is what a miracle she is. So there is hope out there. Prayer and strength are the only way to get through these challenging times. Anyone have a baby with the same diagnosis that can share experiences with?
hi shannon, my son was diagnosed with the same as your daughter he is now 21. all your daughter needs is support encouragement and lots of streaching. keep her limbs moving all the time .i never realised just how much we naturally move our bodies and children with cp must keep moving and streching all the time to keep the muscles strong and encourage the muscles to grow. drs frighten us with their doom and gloom when a baby is born with cp but honestly they dont know what child will achieve i life. i think they say the worst case so you will be pleased with anything that your child does achieve.the bobath is a wonderful place that gives great advice. there is one in scotland and the work they do with children with cp is amazing, its very hard but worth it.you should look them up.my son cannot walk but i believe if he had the proper pt when younger he may have had a better chance to walk.he can do everything else and is very independent.make sure your daughter gets a good education and goes to a main stream school.this will give her a better chance in life.good luck and im so pleased your child is making great progress. its a tough rd but dont give up even when you feel you cant go on you will always find that bit of strength from some were. i would also advice you to find a support group for your self as you will get more help from other mothers/fathers than you will from medical people. when my son was born someone told me i would have to fight for all the things he needed in life at the time i was annoyed with the person for saying such a stupid thing (their child had a disability) but ill tell you it was the most truth full thing that has ever been say d to me. you have to fight for everything that your child needs and it can wear you down if you have a good support system in your family who can help you fight thro the years then it will help you cope.from things like wheel chairs to getting them fixed properly and splints that are comfortable so many things even getting a good amount of pt for your child is hard. for example we live in a house were the bedrooms are upstairs, our stair lift is broke and has been since feb its now nov.now my son cannot walk or stand and he is a man so its not like i can pick him up and carry him upstairs.iv been fighting with people ot phisio housing to get this fixed, no one wants to pay for it so they all pass the buck.now eventually after all this time the ot dept is paying for a new stair lift to be put in.its been along hard rd and even harder for my son to get upstairs.this is only 1 thing there has been so many things like this every thing takes forver to get in the hope that you will pay for it by your self.i would pay for everything if i could. the state doesnt help disabled people as they should if they did life would be so much better for my son.any way im sorry i didnt mean to frighten you i just hope you have help for your daughter. myself and my son have been through every thing imginable but we are still here and happy.if you ever want to ask anything at all then please feel free to ask me.a life time of surviving is the experiance i have. i do understand that disabled or not we can all have a difficult life but if you have needs that others dont you do well to talk to others who have been there done that and still wearing the t-shirt haha. i wish you well and i hope your daughter has
a wonderful life ahead of her . thers always a way to round things we cant do.take one day at a time and never give up and dont believe all that dr s tell you. as a mother you will know your daughter best.good luck and enjoy your daughter. she is a gift from god like all children. bella gal.

 
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Old 11-07-2010, 03:25 PM   #3
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Re: 15 month old baby girl diagnosed with spastic quadriplegia!

Hi there, what amazing results for Janna, you must be over the moon. For us it was the opposite, our initial diagnosis was for very mild diplegic CP (at 9mths) but by 18mths that changed to severe quadraplegic CP. Our daughter was full term, normal delivery and no issues until she wasn't meeting her milestones at 8mths. Aleacia is the same as Janna, her speech is perfect, she has no swallowing or drooling issues, no seizures and she is very bright for her age (she's 4 now).

For Leacie it's been a long road, with much PT and OT, an adductor release and 2 lots of botox she finally got herself bunny hop crawling around the house. We then got a David Hart Walker for her and that seemed a miracle to watch her walk. It's still very hard work but the Hart walker is a mechanical miracle. The gait training that walker provides and much PT she has just now started to use a reverse walker (very teary moment).

And although her hands are so affected by the CP she can still draw and colour-in perfectly, just differently to how other kids do it.

It's still a tough and long road, but I know we're up to the challenge and will cross each barrier as we come to it. I truly feel blessed to have Leacie, I believe she's made me and her siblings much better people.

And what bellagal said is so true, the fight to get each and everything for them is a tough battle and I've only been doing this for 4yrs. I am so not looking forward to losing our ECIS when she starts school, they are the most valuable help we could have.

 
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