#26
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Hi i have just joined today!! I have just found my daughter may have cerebal palsy. My daugher was born at 1 weeks but had a very traumatic birth and many complications at birth and many mistakes were made. My daughter is such a happy gorgeous baby and it is hard to believe at the minute she is 8 months old but is not able to support her neck for long, she can roll on her belly and lift her head I too noticed that maisy does sleep quite a lot and her eating food has took a lot of perservering but we got ther in the end!. The other day she rolled from her tummy to her back it made me so happy to see this little bit of progress! I do get upset when im at work as i work at a nursery and see children maisy age and they are doing so much more then her. I am really lucky though i have a gorgeous daughter and amazing partner and i have a lot of suypport from family and friends.
#27
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awwww what a lovely post to read!!! so many fantastic stories.....my son jacob also has CP although we are unsure whether it is because of his prematurity (28 weeker) or because of his suspected underlying genetic condition.
he did nothing at all for his first 18 months (he spent it all in hospital) no speech, didnt roll or even attempt to move and was often in PICU on a ventillator, we were even at one point given the agonising choice of whether or not to discontinue his life support or give him another 24hrs to wait for improvements.......thank god we gave him that chance and boy its amazing how much difference 24hrs can make! he made it through and is now the most amazing little boy! he is 2.5 and has been home now for about a year (with intermittent hospitalisations mainly for surgical proceedures or minor illnesses). since he's been at home he has learnt to crawl and walk and i have never met such a chatterbox!!!! he is gastrostomy fed but this is for fluids are calorie top ups but he also eats for england! we dont yet know whether he has diaplegic CP or quad CP its casuing everyone some confusion as he cannot sit unaded because of poor trunk control but his gross motor skills in his arms are fairly good, his fine motor issues are another matter entirely but he can do basic arm movements and has good head and neck control. his legs are useless when it comes to bearing his weight but he can crawl up and down the stairs quicker than i can walk them lol. he has problems with apnoea and has very severe bradycardia.
hes just stopped portage as he has caught up cognitively very very quickly, in fact he is now of much higher intelligence than your regular 3 year old, they believe certain parts of his brain are overcompensating for the damaged parts (thats the belief of his communtiy worker, how much of that is based on any sort of medical evidence i couldnt say), i can say with certainty he is more advanced than his brother who is a year older than him!
i personally think that children cope with their disabilities much better than we give them credit for. i (at the disbelief of many people) make sure i give jacob the opportunity to try and do whatever he wants, if he wants to crawl up the stairs in a department store in town then i let him! he brings an enormous amount of joy to everyone around him and is starting a special needs school in september where i am sure he will continue to blossom!
good luck on your journey, i sometimes feel like im drowning in hospital appointments and medical proceedures but it gets easier.
carrie x
#28
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hi my daughter emily is 13 now and we were told she ha cp when she was 2 ,we lost her dad to cancer when she was 6 and i have found it so hard with her ,luckily she is fine mentally and up untill 3 years ago she was walking but is now wheelchair bound ,i dont mean this in a nasty way but i have found it really hard to build a bond with her i do love her so much but we just clash together an i dont know how to put things right between us both ,even though she is fine mentally her behaviour is terrable she is always throwing things around swearing and hitting out if she can not get her own way ,i re married 4 years ago an because me and my daughter was always coming to blows at bedtime now i have had to make a stand that her step dad deals with her but from the time she goes to bed all she does for about 3 hours is constantly shout mom mom mom ,even though i dont show her it bothers me it really wears me out ,i lost my mom 3 years ago and emily was so close to her so was i ,my mom was always there helping me along the way ,guiding me to do the right things and make the right choices,u think that i would of learned by what my mom was like with emily but its just made me feel worthless loosing her and my patience with emily is worse ,i feel a bad mom and like i said before yes i do love my daughter to bits but find it harder and harder each day to get close to her ,i do have 2 other children and i have just turned 40 when will my family be a hapy one ,even though every 1 says i am a great mom and cope really well they dont understand that underneith i am falling apart
#29
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Hi,
I'm Kat, my 3yr old daughter Jasmine's got CP. She can't sit, walk or do much elsa unaided. We've got problems with feeding (mostly because she's really fussy but also because she doesn't chew very well yet). She's the most happiest person I've ever met in my life. She giggles and laughs when she's playing with her cat (poor cat tolerates her with saints patient Smile, she can't stop laughing at Big Barn Farm animals and Mr. Tumble. She loves shopping and loves hes school and swimming.. but, she hates tiredness and sleep. She hasn't slept at day time for few years now.. She goes to bed between 5 and 6, wakes up just before 6am when we're lucky.. Recently though, she started waking up in the middle of the night and just chatting and laughing and giggling to herself.. Not sure what's that all about.
We're waiting for her special needs buggy at the moment, been waiting about 3 months now. We were told it may take a bit of time but never thought it'd take that long. She's quite tall and so outgrown her current buggy so we can't wait for the new one.
As much as I hate what happened to my little baby girl, she's the best thing ever happened to us Smile
#30
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(11-10-2009, 07:47 AM)Sarahsmum Wrote: Hi everyone, my name is Kelly- I have an 22 month old daughter with cerebral palsy.
She was born at 28 weeks gestation so its been a tough journey from the very begining.
Are their any other parents of children with CP on the forum?
Anyway just wanted to say hello to people on the forum as hopefully we will be talking for a while to come

Hi my name is sharon,i have a 27 month old son Josh who has asymmetric quad cp with central hypotonia.
Josh's cp is the result of twin 2 twin transfusion syndrome his twin theo has iugr but otherwise unaffected.
Josh has the most gorgeous smile it would melt you, they have just started nursery together(funded by the 2year old pilot scheme) they love it
Its took me this long to realise that if i need things for josh you have to shout and make a nuisance of my self to get a response


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