24 week preemie, almost 2 w/cerebral palsy, mental retardation and hearing loss

Tracy - posted on 11/04/2008 ( 3 moms have responded )

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My word the subject line sounds awful! He is a miracle child who was not born alive but the doctors were able to get his heart pumping after 8 long minutes. Since he didn't have oxygen during that time, he now has brain damage. He is a great, happy loveable little boy though. He'll be 2 in December, but is not yet able to sit up on his own, nor crawl. Mentally and physically he resembles a 4 month old, although he seems to be getting that whole object permanance thing down pat. He is severely hard of hearing and wears hearing aids, and has no speech, but makes sounds like a dying cat. Would love to chat with other moms! It gets lonely sometimes in our world, but he really is the best kid ever and him and his brother are the best things that ever happened to me--



~Tracy

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Bonnie - posted on 09/10/2009

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Hi Tracy. I have a son who is now 24. He has CP and is profoundly deaf. I know my son is alot older but I sure can relate to what you are going through. My son had alot of help with physical therapy and ocupational therapy at a young age. It does help. He went to a local program through a local mental health facilitly. It was called the PEACH program here and they worked with them and did fun things as well as had the therapies. So get in touch with getting help as soon as possible. And as for the hearing my son struggled with speech therapy. Hearing Aids were no help at all to my son. But if your son has any residul hearing it has to be used and don't give up on the hearing aids yet. But he may need eventually Deaf Educators. Which can be a bit hard to find but don't give up. My son yelled out and screamed and got very frustrated until he learned sign language. Communication is very important to all human beings. And it takes twice as many signs for them to learn one sign as it does another child who learns to speak one word. But they learn through pictures and being consistant with the signs. Your son is at a perfect age to start to be introduced to sign. Go get a sign dictionary of American sign language and have patients he will get the signs. It can be a fun game to him at his age. Start with the stuff that motivates him like food or toys. My son also crab crawled for years on his back the PT dicouraged it but that was his way of getting around and I helped him do whatever he could manage. Remember some of the brightest minds can be caught in bodies that don't work. Don't let anyone in your son's life underestimate him. And they will due to the CP. Many underestimated my son and I fought to get him his services and his interpreters and all the services he deperately needed in school and in his life. Be his strongest voice and advocate. It is a struggle but well worth it! Also it is good to chat with other Moms I am here anytime you need to chat. It can be isolating though. Also if you can find some support groups they are out there. Check your local non-profit groups like Easter Seals, Stepping Stones or whatever names they go by. Look in your phone book or call around. But there are many other Moms and families out there just like us. Hope to hear from you soon. Your son is beautiful!

Cheryl - posted on 09/10/2009

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hiya, my 12 wk old daughter had a rare chromosome disorder with no name so i dnt no 4 def how she will b altho i have been told she will b mentally retarded an im finding it so hard to cope with i actually dont even understand.

Calley - posted on 11/05/2008

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Hi Tracy

I am a mother of 3. My youngest was born with CMV, which attacked her brain causing her to have severe-profound hearing loss in both ears, along with severe developmental delays. She just turned one on Halloween, she is able to roll over from tummy to back, does not hold her head up alone, nor can she sit up on her own. She just recently learned to hold her own bottle, which was huge for us since that shows some cause and effect reasoning. She wears hearing aids in both ears but gets very little benefit from them. She can locate sound with them, and seems to think some noises are pretty amusing, but she only makes o's and a's for noises. I think it is neat that your son is making sounds like a dying cat, I know it is frustrating, but I always think of how that must sound or feel to them and it makes me happy to know they are working at those noises. Has anyone discussed with you the possibility of him getting a cochlear implant? Do you have speech and hearing impaired therapists coming in? We have PT twice a month, and the Hearing Impaired teacher works with her weekly. We have been learning sign language since she was diagnosed with deafness at 5 weeks old. We have someone from the AEA coming in weekly teaching us for free. We sign on her so she can feel the signs, our older kids are learning as well and catch on so quickly. Evie, our daughter, is recieving a cochlear implant on her right ear on this Friday, Nov. 7th. We are excited about this and nervous about the surgery. Please let me know what you are doing to help him and what therapies come to help with that. I'd love to chat more!

Calley

Clear Lake, IA

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