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microcephaly/cerebral palsy Santina Danielle Due March 22; USA 86 posts
27th Oct '12

Hello my name is santina, my son Josiah is almost 8months he has microcephaly and was recently diagnosed with cerebral palsy im kinda having a hard time with everything going on im looking to meet parents of children with similar disorders to talk to, uh dont have nobody to talk to because nobody really understands.. My son was born with a server lack of oxygen which caused serious brain damage he is at a 0to3 month stage in his milestones he is in pt but I need to find more ways to get him active and moving so he can have a chance to walk in his life... Please if u have a child with similar disorders please add me here or on fb..

Juliette 4 kids; 1 angel baby; Olive Branch, MS, United States 3015 posts
27th Oct '12

My daughter has CP. :) there are very few CP mamas on here.

Vanilla MILFshake. 1 child; Georgia 5416 posts
27th Oct '12

My very best friend of 16 years has cerebral palsy. She's 21 and does just about everything I do. She can't use her right hand as good as she can her left and you can tell when she walks that she kind of drags her right leg, but she doesn't let it get in her way that much. I don't look at her any different than I would anyone else. She did take some therapy when she was younger for it. But from what she has told me, her doctors seem to think she is doing very well with everything.

Live-Laugh-Love 3 kids; Kitchener, ON, Canada 7683 posts
27th Oct '12

My youngest (5 months, 3 months corrected age) apparently has lissencephaly "smooth brain" we are seeing a geneticist and neurologist and hes having his second MRI on his brain in January :( They told us that he would most likely not live passed infancy...so far he is meeting his milestones and he is amazing everyone but it doesnt make it any less difficult. If you need anyone to talk to you can msg me :)

Santina Danielle Due March 22; USA 86 posts
27th Oct '12

<blockquote><b>Quoting Juliette:</b>" My daughter has CP. :) there are very few CP mamas on here."</blockquote>




Yea ive been noticing theres not

Santina Danielle Due March 22; USA 86 posts
27th Oct '12

<blockquote><b>Quoting Vanilla MILFshake.:</b>" My very best friend of 16 years has cerebral palsy. She's 21 and does just about everything I do. She ... [snip!] ... when she was younger for it. But from what she has told me, her doctors seem to think she is doing very well with everything."</blockquote>




Thats awesome news for your friend but by the way it sounds her and my son have very diffrent cases they say they dont even know if my son will walk or talk..

Santina Danielle Due March 22; USA 86 posts
27th Oct '12

<blockquote><b>Quoting Live-Laugh-Love:</b>" My youngest (5 months, 3 months corrected age) apparently has lissencephaly "smooth brain" we are seeing ... [snip!] ... milestones and he is amazing everyone but it doesnt make it any less difficult. If you need anyone to talk to you can msg me :)"</blockquote>




Yes I knkw it is very difficult thats great hes meeting his milestones and fooling the doctors.. My sons neurologist said the same about my aon since he was so bad after he was born they didnt think he would make it but he did, although he is very behind on,his milestones im hoping thaf pt will help him out..if u do.t mi.d me asking dp they know why his brain is smooth? My sons issuses come from being stuck in my pelvis for hours without oxygen,:(

Juliette 4 kids; 1 angel baby; Olive Branch, MS, United States 3015 posts
27th Oct '12

<blockquote><b>Quoting Santina Danielle:</b>" <blockquote><b>Quoting Vanilla MILFshake.:</b>" My very best friend of 16 years has ... [snip!] ... but by the way it sounds her and my son have very diffrent cases they say they dont even know if my son will walk or talk.."</blockquote>




They said that about my daughter... she proved them wrong! They caught it so early so you need to keep up with the therapy. He needs physical therepy too. And work with him at home.

Live-Laugh-Love 3 kids; Kitchener, ON, Canada 7683 posts
27th Oct '12
Quoting Santina Danielle:" <blockquote><b>Quoting Live-Laugh-Love:</b>" My youngest (5 months, 3 months corrected ... [snip!] ... me asking dp they know why his brain is smooth? My sons issuses come from being stuck in my pelvis for hours without oxygen,:("


http://en.wikipedia.org/wiki/Lissencephaly

Live-Laugh-Love 3 kids; Kitchener, ON, Canada 7683 posts
27th Oct '12
Quoting Santina Danielle:" <blockquote><b>Quoting Live-Laugh-Love:</b>" My youngest (5 months, 3 months corrected ... [snip!] ... me asking dp they know why his brain is smooth? My sons issuses come from being stuck in my pelvis for hours without oxygen,:("


Also...Im sure that a pt will be very helpful! We just started seeing a team of therapists (physio, speech and occupational) so if we start noticing anything they will be there to help us with whatever we need. Im so sorry to hear about your son mama but just remember that every child develops differently regardless of a disability. My grandfather has CP and hes never been able to use his left arm but he is 70 and doing great :)

Santina Danielle Due March 22; USA 86 posts
27th Oct '12

<blockquote><b>Quoting Juliette:</b>" <blockquote><b>Quoting Santina Danielle:</b>" <blockquote><b>Quoting Vanilla ... [snip!] ... They caught it so early so you need to keep up with the therapy. He needs physical therepy too. And work with him at home."</blockquote>




yes he is in pt and he does the warm water therapy as wel he has more then just the cp tho he has abnormalities on his brain from all the brain damage but were not going to stop trying or give up faith

Santina Danielle Due March 22; USA 86 posts
27th Oct '12

<blockquote><b>Quoting Live-Laugh-Love:</b>" Also...Im sure that a pt will be very helpful! We just started seeing a team of therapists (physio, ... [snip!] ... regardless of a disability. My grandfather has CP and hes never been able to use his left arm but he is 70 and doing great :)"</blockquote>




Yea that should help out alot.. I wish the best for your Lil one

Live-Laugh-Love 3 kids; Kitchener, ON, Canada 7683 posts
27th Oct '12
Quoting Santina Danielle:" <blockquote><b>Quoting Live-Laugh-Love:</b>" Also...Im sure that a pt will be very ... [snip!] ... arm but he is 70 and doing great :)"</blockquote> Yea that should help out alot.. I wish the best for your Lil one"


Thank you! Same to your little guy :)

Juliette 4 kids; 1 angel baby; Olive Branch, MS, United States 3015 posts
27th Oct '12

<blockquote><b>Quoting Santina Danielle:</b>" <blockquote><b>Quoting Juliette:</b>" <blockquote><b>Quoting Santina Danielle:</b>" ... [snip!] ... just the cp tho he has abnormalities on his brain from all the brain damage but were not going to stop trying or give up faith"</blockquote>




One thing I've learned is to prepare yourself for the worse but expect the best.... so what if he doesn't walk.... will that make him any less than a person? Nope. Just because he has these problems doesn't mean he wont live a fantastic life. Once I realized that and started working with my daughter everyday she improved tramendously.... she couldn't even sit up by herself at 9 months but by 14 months she was walking. We "played"everyday and got her moving. We have also not made any exceptions with her. Just because she physical can't do things doesn't mean she doesn't understand. She might walk like a drunk monkey but she walks and I expect her to walk.

Santina Danielle Due March 22; USA 86 posts
27th Oct '12

<blockquote><b>Quoting Juliette:</b>" <blockquote><b>Quoting Santina Danielle:</b>" <blockquote><b>Quoting Juliette:</b>" ... [snip!] ... can't do things doesn't mean she doesn't understand. She might walk like a drunk monkey but she walks and I expect her to walk."</blockquote>




Thank you that was what I needed to see ive been having problems excepting everything the drs tell its like they only say the worst.. Which your right regaurdless of how my son will be I will always love him unconditionally..