#41
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Hi
Im new to this site, It is amazing to hear everyones stories, me and my husband always feel like were all alone sometimes when it comes to me son (2years 6months old).Its taken me a year and half to be able to join a forum like this and tell people about what happened to me and or our son,as its been so difficult emotionaly.
Our son william was born at 32 weeks, however i had severe bleeding from 19 weeks, had placenta perevia, and loss at waters at 28 wks, i went into labour 4 times and finaly at 32 weeks started to lose him )by this point id been in hospital 11 weeks), so they did an emergancy c-section had had to resusatate him.but by 48 he had ripped of his c-pap breathing vent, my husband says hes stubborn like his mother and was determined to survive!Post c-section i contracted a rare form of ecoil in my wound (well every where really) it swelled up and i went in and out consiousness for 2weeks.everythings i blur really! but by 6 weeks in hospital me and our little man went home!
William then got ecoil after four weeks at home, so he spent another 2weeks and highdependency. but got better.
By 9 months old i knew something wasn't right, he couldn't do anything a normal child could do sit up, hold his head, roll etc. so from then untill he was one and a half years old i hounded the hospital and finaly dignosed CP, we were shocked i had never really heard of it before.
But since then he has gone from strength to strength, it was scary and daunting at first (plus no one explained to me exactly what it was or what it ment for william). After intensive physio every week at hospital and everyday with me he has been walking for 4 months , he cant walk very far before needing to crawl, and we have a disability pushchair to get around,some days he cant walk at all because the tone is so high in his legs but other days its better and he can have a go at playing on the park with my help(this makes me very happy!). He has night terrors as well, and is very akward when it comes to feeding times.
But he so happy he makes me smile everyday. Every milestone for us has been worth waiting for , from rolling over to crawling to pulling himself up, but ive found it best not to concentrate on what he cant do, but more on what he can do already.
All the best to anyone out there with children that are differently ebabled.x
#42
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(09-29-2010, 05:53 AM)susan1 Wrote: Just wondering does any of your children with cp feel pain, as my little angel whos 5 in December only diagnosed this Jan as having cp does not feel any pain when he falls and cuts or bangs himself. On speaking to 1 or 2 other people whos children are now adults with cp there agreed that there children were the same and even now as adults still dont feel pain.

Hi. Jack does feel pain but not like other children - he has a high pain threshold. I'm not sure if it's the CP or the fact that he had so many procedures involving needles as a baby. x
Heart Lizzie Heart

Mummy to a lovely boy called Jack who is 4.
Jack has Cerebral Palsy, Auditory Neuropathy, Cerebral Visual Impairment and Nystagmus.
#43
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(10-30-2010, 07:36 PM)princessmaisydolly Wrote: sorry for the very late reply kat, i have been so busy, i just have not had the time to do anything! Maisy whole body is affected she has very low tones but then can get very high muscle tone! How about your little girl? Cant wait now to get our pram, me and my partner went for something to eat the otrher day and it was so akward because she hates being in her pram so we both have to hold her whilst eating so will be brilliant when we get the new pram! We have had good news aswell maisy has just been awarded the higher rate dla which is going to be a great help. The only thing i am struggling with at the minute is PEOPLE! they ask me how old she is and when i reply that she is 1 i can see it going over in there mind and then i feel i have to explain everything to them which can be very frustrating!

I agree it is frustrating - when I tell people Jack is 4 but clearly isn't acting like a 4 year old, you can see it in their faces. Obviously, if he is using his walker they understand better; but if he is in his pushchair or being carried then they always look confused. I only explain if I feel like it though.
Heart Lizzie Heart

Mummy to a lovely boy called Jack who is 4.
Jack has Cerebral Palsy, Auditory Neuropathy, Cerebral Visual Impairment and Nystagmus.
#44
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(10-31-2010, 12:46 PM)Libbie Wrote:
(09-29-2010, 05:53 AM)susan1 Wrote: Just wondering does any of your children with cp feel pain, as my little angel whos 5 in December only diagnosed this Jan as having cp does not feel any pain when he falls and cuts or bangs himself. On speaking to 1 or 2 other people whos children are now adults with cp there agreed that there children were the same and even now as adults still dont feel pain.

Hi. Jack does feel pain but not like other children - he has a high pain threshold. I'm not sure if it's the CP or the fact that he had so many procedures involving needles as a baby. x

Hi
My William doesn't feel pain too, he hardly ever crys if feels over, cuts him self and finds it extremly funny when the cat scratches him (i have told him countless times to leave the poor cat alone!)He also thinks its funny to bang his head against things, I asked our consultant about it and he did some research into it and said he couldn't find any links with cp and pain and told me he would grow out it (not very usefull!)x
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(11-01-2010, 07:48 PM)Lozza1 Wrote:
(10-31-2010, 12:46 PM)Libbie Wrote:
(09-29-2010, 05:53 AM)susan1 Wrote: Just wondering does any of your children with cp feel pain, as my little angel whos 5 in December only diagnosed this Jan as having cp does not feel any pain when he falls and cuts or bangs himself. On speaking to 1 or 2 other people whos children are now adults with cp there agreed that there children were the same and even now as adults still dont feel pain.

Hi. Jack does feel pain but not like other children - he has a high pain threshold. I'm not sure if it's the CP or the fact that he had so many procedures involving needles as a baby. x

Hi
My William doesn't feel pain too, he hardly ever crys if feels over, cuts him self and finds it extremly funny when the cat scratches him (i have told him countless times to leave the poor cat alone!)He also thinks its funny to bang his head against things, I asked our consultant about it and he did some research into it and said he couldn't find any links with cp and pain and told me he would grow out it (not very usefull!)x

There definitely seems to be a pattern here. x
Heart Lizzie Heart

Mummy to a lovely boy called Jack who is 4.
Jack has Cerebral Palsy, Auditory Neuropathy, Cerebral Visual Impairment and Nystagmus.


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