I'm Manda and I have a son with Severe to Profound Hearing loss. His name is Jesse and He is perfect all around except...... He can't hear a word I'm saying to his cute little face. He is a profiler though and uses his other senses very strongly. Jesse has a big sister that has NO hearing loss and I really didn't expect this until I delievered this Brute at 39 weeks. He weighed 9lbs and 2 oz and 23 inchs long He was a perfect Boy until he failed his newbron hearing test. I thought nothing of it until we went to the local ENT and failed 5 tests there. They told me to go to the big city and they would give me further tests and instructions for him. At first they thought he just had fluid in his ears and My heart soared thinking that he'll over that but when they put him into surgery for the tubes they cut open his eardrum and found no fluid so they decided against the tubes and gave him a sed. ABR and Cat scan thats when they told me that Jesse has bilateral neuro-sensori hearing loss to the status of severe to profound. Meaning he could only probably hear like semis and such. He just got hearing aids and its a constant battle with him to get them to stay on and stay turned on.. I almost gave up a couple times but I want him to grow up without signing and get into speech therapy I want him to go to regular school for the sound of special ed. horrifys me My son does not need to be treated differently because he can't hear I still pray that everynight that Jesse will wake up and can just hear and respond to me when I tell him I love him. I cry everynight thinking about his difficulties in life he will have. But the Lord is my witness I will not give up He will hear if I have to find the cure I will.....
I am sorry to hear that this is so heart breaking to you. It is quite overwhelming at first, but it is certainly not the end of the world. I remember worrying about whether my daughter would ever hear things like birds singing and such. Kids today do so much better than in the past when they did not figure these things out until kids were much older.
If his loss is severe to profound, there may be much he can hear with hearing aids. It just depends upon the child. Keep working hard on keeping the hearing aids on him. If you find that they are not making a difference, then you can discuss with your ENT and audiologist about whether he is a candidate for a cochlear implant (or two.)
Don't let the idea of special ed horrify you. Your child won't be in special ed with kids who are never going to get a regular diploma or anything like that. You want him to get everything he needs to be successful in life and special education will be part of that. For most kids, by the time they are regular school age they are in a regular classroom with special education support staff as needed, not separate from everyone else.
Have you contacted your local Early Intervention office? They may be great or horrible, but they are the ones who should be able to evaluate your son and help you get things like in home speech therapy, a teacher of the deaf, and so forth.
My daughter failed her newborn hearing test as well and was diagnosed with moderate to severe hearing loss. She got hearing aids at 11 weeks. We did have a rough patch during which she had lots of ear infections on top of the hearing loss and using sign language helped immensely with that. I truly believe that once we got the ear infections under control that learning to speak went so much faster because of using signing along with speaking.
Please keep us updated on how things are going for you. I know it is so overwhelming at first. I will keep your family in my prayers. Just remember to enjoy your lovely boy without worrying about this every moment of the day. It will work out and you do have time to figure it all out.
A good site to check out is: http://listen-up.org
I actually have looked into cochlear implants and I have decided that I won't make that choice when Jesse is old enough he can
i am an audiologist, and honestly, the best time for speech and language development with a cochlear implant is before five. think about it. he can always have a choice if he wants to be part of the Deaf community later in life he can remove his processor. i know it's a hard choice. kids with CI's can be mainstreamed and live a very full life, i have seen it with my own eyes!
I have heard the same thing about implants, that they work best the younger they are done because the brain will learn to use the sounds better.
I believe there have been recent studies showing that the part of the brain used for hearing starts getting used for other senses instead if hearing does not work. (This study was not related to implants, just a study I recently read about.)
Hello.. I am new too.
- mandasilver88
on Jul. 14, 2009 at 7:32 PM