Wednesday, October 2, 2013

Johnny "Wait and See" Strikes Back

Today we went to the follow up for Johnny's tube surgery. I do need to post all the details about how awesome that went, but tonight I will focus solely on our follow up today. Part of the follow up is an appointment with audiology and the second part is seeing our ENT.

The ENT portion went fine, the tubes are doing their job, Johnny is responding well to them and we will go back in 6 months for another check. It is fairly common for kids with Ds to need a second round of tubes, but we will see how it goes. He also sighed when he looked in Johnny's left ear and said he was having flashbacks to the operating room where Johnny's ear was almost impossible to place the tube in. I am so pleased with our ENT, anyone needing a referral, please message me.

For audiology, we went it, answered a few questions (how is he responding to sound, any drainage, how is verbalization) then began the first of two tests. For the first, he sat on my lap in the sound box while the audiologist spoke into speakers on either side of the room. She took note of how quickly he responded and looked in the direction of the sound. For the second test she placed the sensors in his ears, tried to get him to stay still, and the computer measured a whole bunch of stuff. After fighting to get the correct results, she said he passed in his left ear, but failed in his right. This could be due to a number of reasons ranging from profound hearing loss in that ear to only minimal hearing loss to none. It could be certain pitches or ranges, but she couldn't tell any further from this test.

Our next step involves scheduling an appointment to go to the medical center for further testing. There, they will sedate Johnny, attach electrodes to his forehead, then play sounds through ear phones or another device, while monitoring brainwaves. This is called an ABR, or Auditory Brainstem Response. He had something similar as a baby, but this was just a screening test, this will be a full test. From what I can tell, the test will take anywhere from an hour to two hours. We will get results immediately and see if nothing needs to be done, if we need to monitor, or if we need to look into other things like hearing aides. He could pass and everything could be fine or he could fail further. Kids with Ds have all sorts of ear and hearing issues so it's kind of up in the air for which direction this will go in.

I realize there could be nothing wrong. I realize that even if there are issues with his right ear, his left ear seems to be working fantastic. I realize that he is extremely verbal and that is a great thing. I realize that it is wonderful that we have met our deductible for him this year and won't have to pay anything for any other visits he needs until Jan 1. I realize that at the end of the day we will keep pushing forward and chugging along like we have.

But, right now, I'm pissed.

And I don't even know who or what I'm pissed at. Maybe a lot of things. Maybe I'm mad that they didn't really suggest that the fluid wasn't the only thing causing some hearing issues before. Maybe I'm mad that I didn't ask or clarify. Maybe I'm mad that I have gotten comfortable and settled into things, thinking we were safe and that I knew where we were headed. Maybe I'm mad that I have to take him for more appointments. Maybe I'm mad at God for trying to teach me something that I don't want to learn and for using my son to do it. Maybe I am mad that my son has to go through this. Maybe I'm mad that this sweet little boy, who, all stereotypes aside, wants to snuggle, hug, and smile his way through the world, but he keeps having to deal with all this "stuff". Maybe I'm mad that I can't take all of his issues and put them on myself, because I would gladly take all of this and carry that burden if given the chance. Maybe I'm mad at the thought that, even though I am thankful for the technology to make him hear better, that if he does need a hearing aid, it just marks him one more time as being different. Maybe I'm mad that he will garner more stares and looks and questions with a hearing aid. Maybe I'm mad because as verbal as he is, he could be doing even better if he was hearing all the way. Maybe I'm mad because I just want to know for once, I just want to know where we are headed and that we are on the right path. Maybe I'm mad because I'm trying to be brave and positive, but I just want to hit someone or something, but there isn't anyone or anything to blame, it just is...

He is so worth the fight though. He is so worth the heartache and the troubles. It makes it hurt more sometimes, because he is so good, and he deals so well with all the set backs and struggles. I am so proud to be his mommy and, for now, we will "wait and see"...some more

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