Hi i was just wondering if any one has a child with severe brain damage caused from a lack of oxygen during delivery or after birth, cerebral palsy, cordical vision impairment? i'm just looking to connect with other famlies. my son is also trached, g-tube, nissen, unable to eat anything by mouth, o2 dependent. well if you do have a child with these issues i would love to talk with you. have a good day for all those that have read this!!!!
Hi C..
Have you tried contacting the children's hospital that is local to you? They may have support groups for families in your situation. If the children's hospital isn't local for you, you may want to try looking into a Visiting Nurses program available in your area. You can start looking for these by contacting the pediatrician's office and even looking online.
My younger brother was born with cerebral palsy, almost 26 years ago. It was caused by a very difficult twin delivery, in which the twin did not survive. I don't have a whole lot of resource information, but my parents could probably hook you up with the people they know. My personal email is ____@____.com will certainly need all of the support you can get! Good luck.
My family and I are adopting a baby hopefully by the end of next month who has brain damage, as well as cortical blindness, she doesn't have CP or any other major medical problems. Maybe we can swap stories she is 20 mths old and very devolpmentally delayed.
Hi! My name is K.. I am 27 years old. I just joined this mom's group thing and read your post. I have 3 boys. My oldest, Connor, is blind and multiply handicapped. He was born and diagnosed (at 3 months old) with Septo-Optic Dysplasia, Panhypopituitarism, diabetes insipidus, cyclical vomiting syndrome and blindness. Because of his brain damage, he also has something that looks like cerebral palsy (although they have yet to diagnose it as that) where the left side of his body is much weaker than his right and he keeps his left arm to his chest. He has a lot of trouble using it. He cannot walk and has vey limited speech. It took us 2 years and finally moving to a different city to get him into the school we wanted. He currently attends Perkins School for the Blind in Watertown, MA. Connor is a remarkable little boy who has taught us so much. I look forward to hearing from you and I would love to know more about Cameron! Have a great day! ~K.
Hi C.,
My 2 month old daughter was born with brain damage. We don't have any answers as to why yet. She was diagnosed with HIE(lack of oxygen to the brain). They tell me me that the damage is significant. This is my first baby and would love to connect with families in the same situation. My daughter is doing well now, but don't know what the future will be like for her. She is the best thing that ever happened to me and I get so angry that this has happened to her. I would like to chat with you about how you stay strong when your heart breaks thinking about what your child's quality of life is going to be. I hope I'm not being too depressing. It's just that my daughter is only 2 months old and I haven't gotten over the anger. This is why I joined this club. To talk with other moms and get over how angry I am and move on with my life with my precious little girl.
Jessie
Dear C., I am not in the same situation but i am 35wks pregnant and found out my little girl will have spina bifida and greatful everyday that she is going to breath on her on and eat on her own.She may not walk or go to the bathroom on her own but its my little girl and draw strength from stories and families like yours.So thank you for your story!!! I will keep your family and your little cam in my heart always!!!
Sincerly
H.
(mama to be :)
Hello C. i never seen that u posted on the bord till just know..Ugh im slow well its 5am and Little Man is on strike was up from 2:30 till 5:00am Well I see you got some good feed back thats great....I loved that u stoped over with Cam He is getting so Darn big WooHooo Sexy little man..
my daughter is 3 months old and has stage 2-3 HIE from not breathing at birth. she was in the nicu for 5 wks. she was on seizure meds for her first 6 wks and currently isn't. she got a g tube at 5 wks and vomits at every feed. her head growth in behind. we're taking her to the optimologist soon cause we don't think she can see. her arms, hands, and legs have tremors. her arms have involuntary movements. i have a healthy 3 yr old and i still can't believe all this happened. the pain is so deep. i too would like to connect with others in a similar situation.
