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Cerebral Palsy Message Board


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hello i am new here and am looking for some input from other parents in the same situation as i am. hopefully we can lift each others spirits by sharing information. i am a 22 year old mother to my som levi. levi was born 9 days over due i had a great pregnacy but a long and hard delivery and due to negligent doctors my sons delivery was delayed which resulted in lack of oxygen and he is now livin his life with spastic quad cp. he is currently about to turn 2 in febuary 2 weeks before i am due to give bith to his brother/sister. he is unable to do much at all adn i am just looking for other mothers who have had any sucess with there child no matter what age in reaching or even getting closer to some milestones every mother wishes their child to reach. levi's apgar scores at birth were 0 at 1 mins and 3 at 5 mins basically diagnosed as a still born but was revived 20 mins after birth i wont get into the mistakes that were made that night by doctors. we wer told that it would be a waiting game and still no one tells us what to expect or what he will be able to do levi is now able to do follows:

he can roll from side to side and from belly to back but not from back to belly

he can sit in a ring position playing for about 3 mins at the longest but loses ballance very eaisily

can open his hands with great effort but they stay clenched most of the time

cannot say any words except for the occasional mum dad with a lot of effort he babbles mildly but not all letters are said

he can drink from a bottle and can only manage pureed foods chunks cause a chocking hazard

he is an extreamly bad sleeper and is very windgy through out the day.

he has had corrective eye surgery but no major surgerys as of yet i would love to hear from other people of what i am going to have to put my son through inthe future with operations ect:

thankyou for your time :)
I have a three and a half year old with Spastic Quad CP and he can't not do much on his own I still have to do a lot for him. He can sit on his own for maybe 30 sec to 1 min but not very well and loses balance very easily, he eats mashed foods no chuncks as he chokes and the only liquid that I do not have to thicken for him to drink is pediasure which he is prescribed to have 4 cans a day, I'm lucky to get 2 - 3 into him. He occasionally rolls from tummy to back or very very rarely back to tummy. I think it's more his high tone that enables him to do that. He grinds his teeth and as a result all of his front teeth were pulled his eye teeth repaired and molars capped in stainless steel to prevent further damage. He is working on crawling and he can wiggle himself around the floor in a general area. He has a visual impairment so it makes it very interesting when he wiggles around. He is getting closer to getting his knees up under him and if he continues doing well with his standing and walking with my help in the spring we are looking at a specialized walker to help him get around. There is a light at the end of the tunnel it just takes a lot longer to get there than usual.

My son also has a seizure disorder and they told me that his medication for the seizures would make him tired or drowsy. That was not true he was a bad sleeper he could go 36 hours full throttle if you let him. After almost three years of virtually no sleep they finally had to prescribe something for him. Most kids with CP can take melatonin and this helps, my kid is one of those very few that it did help and for me it made things worse, giving him melatonin was like 3 cups of coffee for an adult so they had to prescribed something else which works and he now sleeps almost all night long getting up only once or twice vs 5 - 8 times.

Good luck with the new baby, I still haven't braved having another child and I think that it's because they don't know why my son ended up with CP. :)
[QUOTE=levi'smum;2756011]hello i am new here and am looking for some input from other parents in the same situation as i am. hopefully we can lift each others spirits by sharing information. i am a 22 year old mother to my som levi. levi was born 9 days over due i had a great pregnacy but a long and hard delivery and due to negligent doctors my sons delivery was delayed which resulted in lack of oxygen and he is now livin his life with spastic quad cp. he is currently about to turn 2 in febuary 2 weeks before i am due to give bith to his brother/sister. he is unable to do much at all adn i am just looking for other mothers who have had any sucess with there child no matter what age in reaching or even getting closer to some milestones every mother wishes their child to reach. levi's apgar scores at birth were 0 at 1 mins and 3 at 5 mins basically diagnosed as a still born but was revived 20 mins after birth i wont get into the mistakes that were made that night by doctors. we wer told that it would be a waiting game and still no one tells us what to expect or what he will be able to do levi is now able to do follows:

he can roll from side to side and from belly to back but not from back to belly

he can sit in a ring position playing for about 3 mins at the longest but loses ballance very eaisily

can open his hands with great effort but they stay clenched most of the time

cannot say any words except for the occasional mum dad with a lot of effort he babbles mildly but not all letters are said

he can drink from a bottle and can only manage pureed foods chunks cause a chocking hazard

he is an extreamly bad sleeper and is very windgy through out the day.

he has had corrective eye surgery but no major surgerys as of yet i would love to hear from other people of what i am going to have to put my son through inthe future with operations ect:

thankyou for your time :)[/QUOTE]
Hello,
My Son will be 4 on Thursday and he has Spastic Quad. CP He can't sit, talk, eat anything more than soft foods etc... but is very cognitive and understands a LOT more than people give him credit for. I wish there was a "magic" key to unlock him from the prison he is in so he can function like everyone else. He is my 7th child and we are expecting #8 shortly. Congratulations on the current pregnancy and I hope there are no complications this time.
Mary





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