The little guy is getting hearing aides tomorrow. To make a looong story short we basically got to FM, took him to his bi-yearly hearing check-up and our new audiologists red flags were blazing red after looking at his results from SIX MONTHS ago when we were brushed off that his tests must have been "off" because of his cold. To say that we are frustrated is really an understatement. I don't even want to talk about what this could mean for him because it makes me so angry....so I just won't. I'll save my energy on focusing on what we can do now.
We had a repeat test called an ABR a couple of weeks ago to tell us more definitively what his loss was. The last one he had was at six months when he was diagnosed with a unilateral sensory hearing loss in his right ear. Basically he couldn't hear one pitch at normal conversation levels in one ear. We were told he would develop normal language and his left ear would compensate. We were also told that it is extremely rare for the loss to progress and would probably not go to the other ear. Now 1.5 years later he has a bilateral loss (meaning both ears) with each ear struggling to hear two different pitches at that conversation level. On top of that they diagnosed him with audio neuropathy, which is a whole different story.
We are so thankful that we have moved to Moorhead right now. Our old school district would not have been on top of things like this one is. I casually mentioned to the preschool screeners for Svea that our son had a hearing loss and less than a week later they were at our house to start the evaluation process. Kieran will be receiving speech and developmental therapy twice a week.
So the whole auditory neuropathy. We found out today that he is the ONLY child birth to 12th grade that has this in the district. This is a town of 40,000 people and it was really a blow. It's hard to diagnose so I just keep praying he either has a very mild case of it or it's a wrong diagnosis. Basically what it is is Kieran hears static on top of his hearing he does have. Sometimes the static is lighter than other times. If you google a simulation you can hear what he hears. The brain and the nerve don't communicate in the right way. Hearing aides DO NOT help for this and my head is about ready to explode from explaining it. Hearing aides may help him, but they may also just amplify that static. I've been getting frustrated with people who say, "Well now it'll be better. He is getting hearing aides." Or, maybe it will get better". It's not getting better. It's nerve damage and it's permanent. He was born with this genetically more than likely and all we can do is hope and pray it does not progress further..the hearing loss or the auditory neuropathy.
So, today is the last day that Kieran will be hearing aide free for the rest of his life. He will never again not have them and I don't know why, but that feels so strange to me or makes me slightly sad in a way even though there is a 50/50 chance they will help him tremendously. I sure hope so:) Here is what we pray for Kieran.....that he can develop normal oral language and be able to pronounce words correctly. He is so bright, but if he can't speak correctly people generally interpret that as lower intelligence. That he won't be picked on or teased. That he will be safe and will listen and learn from us when we teach him about car and other safety and the need to use his eyesight more instead of relying on his hearing. We pray that he will be an advocate for himself and if he doesn't hear someone that he asks for clarification. We pray that he will be happy and that this won't cause him major frustration.
Overall, Kieran is going to be ok. He has a hearing loss, but he's healthy and happy. We are SO thankful for that. This is his life journey and we just hope to do a good job of being there for him and while he's young making the right decisions for him. We will start sign language with him in case his speech doesn't take off. If it doesn't he has the potential to just drop the language and then he's going to need a back-up way of communicating. Our current audiologist said he would have aided him at six months. That means we should have been hitting sign language harder than we did when he was a baby and think of how much further along he may have been if he had been. ARghghhghg!!!! Ok, see there I go getting so angry. If anyone struggles with hearing loss and you live in St. Cloud area let me know. I'll tell you where NOT to go:(
We will update on how he does with the aides. We think we may be in for a battle, but are trying to remain hopeful for a smooth transition.
No comments:
Post a Comment