Discussions By Condition: Nerve conditions

i know its long but please read our family

Posted In: Nerve conditions 3 Replies
  • Posted By: aliciapeacegirl
  • December 22, 2006
  • 00:17 AM

I like to tell people our story so maybe it will help others somehow. I dunno. Well, I was 14 when I was pregnant. I was very scared and so was my boyfriend. We planned on doing everything right. Then we found out I was already 5 and a half months along. I had no signs of pregnacy. No wieght gain until 7 months. no stopping of the period until then either. I got more scared. Then as the day to have him came near we thought we were ready. i tried for 3 hours to have him on my own. But there was no give. he only moved a quarter of an inch. I was worried. My boyfriend was terrified for both of us. We had to have a c-section, but my epiderals were not kicking in so they put me out completely to be able to finish cutting my open to make sure my son would be okay. then david was born, 8 and a half pounds, 23 inches long. wow, big for me beig 14 right. As he got bigger we got more worried. He cried constantly. i don't mean like baby cry/wine. I mean tears, and screaming so loud you could hear him a block away. so, we went to the doctor, oh he is just colickie. he will grow out of it.a month or few passed by, still cried and now he isn't tring to do anything. wont lay on the floor, in his bed, doesn't want anyone but me. he wouldn't try and hold his bottle ,play with toys, not even try to hold his head. ....nothing. and still the relentless screaming.....back to the doctor. he is just colickie and lazy. he will grow out of it, but just in case we will make an appointment with a specialist. he was 5 months old. 4 months went by, nothing got better and not appointment came. so me and my boyfriend took him to the specialist on our own. we were so worried. The doctor spent five minutes with him and knew right away that our one year old little boy had cerebal palsy this whole time and had been cring for a year straight out of pain not out of laziness or colickieness...out of pain. They continued to set appointments for tests to see how it happened, why my son had to go through all of this. one of the tests was a mri. the deal breaker of tests. this will show us why. my boyfriend "which is my husband now" and I was going crazy for like a week waiting for the result to come back it was my horrible labor process or in the birth canal too long or something, right. no, he has a brain malformation called bilateral schitzencephaly type 2. a rare condition where the brain basically doesn't form properly. If his brain was split into two parts down the middle, 100% each he oly has 50% brain mass on one side and 25% on the other. he only has the top bottom brain mass and also the brain stem. so it is shaped like an hour glass. We were stunned. how do you react to that, I mean really. so, we got all his therapys set up, treat him completly normal and just basically love him. They told us he was more likely than not going to be in a wheel chair for pretty much ever, he would be blind , severly mentally handicappied, wouldn't even remember me and his dad from day to day. We just counldn't give up though, I mean right. he is our son, how can they say that about our son and us just be like...okay. So we work with him, love him, teat him as any other kid as possible. Now, he can eat regular food, and he is so smart. I mean the were amazed. he loves coloring, books, puzzles with the nobs of course.i can talk to him and he may not be able to talk back but you know he understands better than most kids what you are saying to him. His cerebal palsy may limit his body but not his mind. When we lived in florida a few weeks ago" we just moved back so we have to get re setup" he went to a school called nina harris for special needs only. best school in the world i think. he was advancing very well , he went from cring only for me to cring to go to school. he loves anything that has to doo with learning and i don't think it will be much longer that his physical delays are going to be able to hold him back from more physical learning.he is almost four and very bright for his age. Loves matching colors by blocks and toys, looking through books, t.v. , even just going for walks outside or just talking with mom or dad. me and his dad have been together for 7 years I am 18 he is almost 21 now. and our little four year old we would never trade or change. but just because the doctors said something based on other cases or research dosen't mean you have to just leave it at that. they said that about david cause he has one of the most severe cases, but when they seen what he could do, now not any doctors or thearapist ever put any limitations on him. heck he just won studdent of the month in sept. and we were the proudest parents ever.:) :) :) :)

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  • what a wonderful story :) . I think when we are younger we have more patience too in dealing with things. I had both my children while I was still a teen. With my youngest who was born disabled, I got told by a neurologist when she was two, that she would never walk. At two she still couldnt crawl and she didnt have much feeling in her legs. After so many different treatments I put her throu and a heap of daily physiotherapy.. she was able to take her first steps at 2 and a half years old and at just three was walking with a walking sticks we made her .. and later on a frame for a while .. by 4 she was walking alone. Many would of probably just listened to the childrens neurologist but our daughter always had a fighting spirit so we sought out alternative therapists to help us, we werent going to just give up. Our godsend was a chiropractor who put us onto cross crawling exerises which me and her father did a couple of times daily with her legs. Over time she learnt how to coordinate her body and got stronger. Best luck to you all.....
    taniaaust1 2267 Replies
    • December 30, 2006
    • 03:37 AM
    • 0
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  • hi there, i read your story, and isnt it annoying when you put trust in doctors because you think they know what they're talking about, when most of the time their information is from books and not experience. they are just as capable of making mistakes as anyone else but sadly it was your little fella that had to bear the consequences. i remember watching a documentary years ago on tv about a couple of unrelated kids that actually had no brain. under mri scan only the outside layer and stem was there, and the inside was empty, only fluid. and these kids were incredibly intelligent. the doctors were stumped. i think your son will be absolutely fine, he sounds fantastic and being loved and having such caring parents will balance it all out. doctors really do not have much understanding of the brain and how it works. they are learning more every day and changing past learnings. like trying to make words when you only have vowels and not the rest of the alphabet. i think the brain is more of a battery that charges our bodies, and our spirit and soul is where our intelligence lies. and with such love and support feeding your sons soul he is bound to be a genius!!
    Anonymous 42789 Replies
    • December 31, 2006
    • 02:49 AM
    • 0
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  • Hi, i was very touched by your story and think you are doing really well.My little boy has schitzencephaly and was diagnosed by mri at 11 months.He too was born 8pd 8oz with no sighns of any disabilaty but as he got to 8 months my health visiter started to worry as he wasnt sitting up or crawling and so we were sent to see various doctors.Harley is now 2 and is a very bright, happy little boy, he cannot sit up or talk yet but i have every belife he will continue to surprise his conultants as he is so determind and me and his daddy will never give up.
    chrisl 1 Replies
    • January 10, 2008
    • 11:40 AM
    • 0
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