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Old Aug 26th, 2015, 12:32 PM   41
Mrs. AJ
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We are lucky my dh has really good insurance so we only had to pay a $200 hospital copay. Insurance also pays for speech therapy, though we pay out of pocket for the toddler program which is quite expensive.



 
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Old Aug 29th, 2015, 14:02 PM   42
mummyruston
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Keep looking at my newborn son (I can still call him that can't I as he's 6w old?) and wondering why he's been afflicted with bi-lateral severe to profound hearing loss.

I'm not in denial but keep asking myself why us, why our boy?!

I'm just gutted I really am and can't talk about it really without breaking down or speak to anyone who knows what I'm going through - that's why I've come here!

I feel like hos diagnosis has put a real cloud over his birth which should be such a magical time



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Old Aug 29th, 2015, 14:08 PM   43
Mrs. AJ
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I know what you are feeling. Let yourself feel it, it's only natural. My dh and I actually went to grief counseling briefly after our daughter's diagnosis. There are still times when certain things will hit me and I'll tear up - sometimes tears of joy at Allison accomplishing something I never thought possible. Sometime tears because of challenges she still faces. But it has gotten. So so much easier, especially as I can see her progressing so beautifully. Remember to breathe and to just let him be a baby, try not to let the hearing loss be all encompassing, though I know how overwhelming it is.



 
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Old Aug 29th, 2015, 14:22 PM   44
mummyruston
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Yes I do feel grief. Yet feel guilty for feeling grief when I have a perfectly happy and healthy baby albeit severely to profoundly deaf.

I guess you never think it will happen to you, especially if you've followed every guideline, been fit and healthy and a straight forward pregnancy and birth.

I guess he's such a tiny baby I just don't know how things will pan out and just hope he will progress like any other child.

At the minute he's exactly like any other baby - hearing baby and smiles, holds hos head etc. I just absolutely hope it's not linked to something else



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Old Aug 29th, 2015, 14:30 PM   45
Mrs. AJ
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where are you located? Are you already in touch with some sort of early intervention program for children with hearing loss? I know here we had a social worker come out just a few days after we got the diagnosis and they were able to put us in touch with other families in our area. And counseling is helpful too. Hang in there. He IS a happy normal baby and has wonderful things in store and will surprise you regularly (and frustrate you too, that's just part of parenting )



 
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Old Aug 29th, 2015, 14:34 PM   46
Mrs. AJ
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And as someone who's gone through the process of hearing aids, cochlear implants, speech therapy, and ASL I'm happy to be a resource as well. And if you want I can send you my fb link and I can point you to some support groups there.



 
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Old Aug 29th, 2015, 15:10 PM   47
mummyruston
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We live in the West Midlands, UK and thankfully have two regional children's deaf societies and a support worker for sensory loss who is visiting on Wednesday for the first time who will be able to put me in touch with other families.

It's the summer holidays at the moment so most things including toddler and baby groups stop until September which also includes the sensory loss ones too.

I'm hoping once we begin to see other families and other children with aids and implants it will be more positive



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Old Aug 29th, 2015, 15:15 PM   48
deafgal01
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I fully back up mrs aj when she says it is ok to let yourself feel grief, anger, sadness, all the emotions you feel about the diagnosis. My parents went thru it too. Better to feel it than bottle it up. September isn't too far off- soon you will meet others who are in the same boat you are in and your baby boy will amaze you! He will still babble and make sounds same as other babies. You will learn new strategies of how to help him to make connections to sounds and identifying them in addition to using sign language (as back up visual language). Thinking of all of you with your sweet babies!



 
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Old Aug 29th, 2015, 20:51 PM   49
SoBlessedMama
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Mummyruston, I agree 100% with what the other ladies are saying. Whatever you're feeling is completely okay--just feel it. It will get better. There will definitely be challenges, but it will get better. He's going to do so many things to amaze you, and you'll see he is just a happy, healthy little guy who interprets the world a little differently.

When our boys got their hearing aids, it was in a children's hospital that has an amazing audiology team. But it wasn't in just a hearing clinic. So walking through the hospital before each visit actually helped to greatly put things in perspective. There have definitely been some sad parts--the two that hit me the hardest were 1) the night I was singing to the baby after we got his diagnosis, and I realized he'd never heard my voice. He'd never heard me sing "Jesus Loves Me", even though I'd done it literally every night of his life. And 2) when we were having to sit in a meeting to write the educational service plan for our older son as he started kindergarten, and I wanted to cry when the thought hit me, "I don't want to have to do this."

I've run the whole gamut of emotions, but overall, it has been an amazing blessing. Wearing the hearing aids is now second nature...in fact, just tonight, we accidentally stuck the five year old in the bath with them on because we forgot to take them out lol.

It WILL get better. It WILL get easier. He WILL make progress, and he WILL blow your mind and steal your heart with all he's able to do.



 
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Old Aug 31st, 2015, 02:20 AM   50
horseybird
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I fully agree with the others in letting your emotions run. Its so raw for you right now and early days. I still have the odd day of feeling sad about it. But they don't know any different, they know they are loved and they will communicate with you and have a full life. I'm trying to think of it as she can do anything she wants but may have to work but harder or do things in a different way.

I feel for you. I also found it hard before we had all the tests come back. I find information helpful.

Try to enjoy him as normal baby. Izzy loves playgroups - watching and interacting with others, she loves being read to and loves swimming. We have more tests tomorrow but these will never be a stressful as the first batch of tests and are more play based. Izzy used to scream the place down in Audiology but nw she recognises the staff and loves showing off and all the attention. It will get easier

Hugs to you xxxx



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