Thursday, August 1, 2013

I Hear You

Before Addison could be discharged from the NICU as a (5 week old) newborn, she had to have a hearing screening test. Because of the overwhelming nature of all of her other health problems, we didn't even worry about her hearing until they couldn't get a good read on one of her ears.

They recommended us to a clinic downtown which after an hour and a half of frustrating tests- they told me they couldn't get a good read on EITHER of her ears, but it appeared that she had some hearing loss- they just knew nothing about what was causing it or if it would go away.

This prompted us to visit the local Otolaryngology specialists. They still couldn't get a definitive read on either of her ears, but they informed me that they thought she did have hearing loss- it was like she was hearing everything underwater. They weren't sure if this was something that could fixed with tubes, but even if it could- her ear canals were too tiny for them to get tubes in there.

We went back for a follow up appointment to the Otolaryngology specialists after she had grown another half a year (all of these appointments occurred months to years apart) and in spite of all of their tests they STILL could not get a good read on her ears.

This left us with a 3 year old who had yet to have a definitive hearing exam. For so long this issue fell to the back burner because of her many other health problems, but she had reached a point where this was top priority now. She was hitting school pretty hard and was relying on her hearing for a lot of her development. We wanted-needed some answers. Should we get her hearing aids to help her learn better? Could another doctor get tubes in her ears? Was her hearing loss permanent or could surgery be performed to help?

I wanted to take Addison to the Boston Down syndrome clinic, but Dartmouth was closer, so insurance prompted us to go there instead. Back in May we went for an initial appointment. Surprise, surprise- they could not get a good read on her ears. But they said for sure- yes, there was hearing loss and once we got a better read on how much loss there was we could talk tubes or hearing aids.

This brings us today.

We went back to Dartmouth for a sedated hearing exam (sedated ABR). The sedation may seem extreme, but was necessary for them to finally get an accurate read on what is truly going on in those tiny ear canals of hers instead of the guessing game we have been playing for three years. She has been sedated four times before for four separate surgeries, so we didn't freak out too much about that part of it. The need for answers trumped the preference to not be sedated. While she was already going to be under- her new eye doctor at Dartmouth also planned to do a vision test since we have had so many conflicting reads on her eyes in the past. Sedated exams promised to be much more accurate.

Her last surgery was when she was under 2. Turns out its a lot easier to have a patient who can't eat before surgery when that patient is much more babyish. When they are old enough to find their own food- and fight you for it, but not quite to the point where they understand why demands for "cereal" and "crackers" and "cookies" are ignored by mean ol' mommy? Not easy. Also- I still had to feed Carter....who delighted in running out to Addison and flaunting his goods in front of his sister even though I was trying to feed him in hiding. Sigh. Not my favorite morning ever.

All of that aside- we headed in for the big test today. We took help with us and drove the hour and forty-five minutes to her exam.

Fully expecting to hear more about her hearing loss- just more specifically this time- you can imagine my shock and surprise when her sedated exam revealed that she had absolutely no hearing loss. Normal hearing falls between 0 and 20, and she scored a 10. Once you hit 25- that's when they start talking about hearing loss. Her ear drums looked beautifully healthy and there was no extra fluid present anywhere in her ears that would suggest a need for tubes.

You have to understand- we take Addison to the heart doctor? She needs heart surgery. We talk to a hematologist? She has transient leukemia. We take Addison to the physical therapist? She needs orthotics on her legs and feet. We take Addison to the eye doctor? She needs glasses. I'm just used to getting bad news about Addison's health, so I almost didn't know what to do about today's good news.

First of all, I can't even tell you what a relief it is to FINALLY have a definitive answer (you know- the answer that most of you got at your child's newborn screening?). Second of all, it's amazing to be able to confidently call her on her manipulations when she pretends not to hear commands she just doesn't want to hear. Third- I have watched her love for music grow and grow, and I love that this is one sense of hers that is untouched by Down syndrome. I have been thinking about starting her on violin for a while now, and after today's test I am considering it even more strongly.

Today was exhausting and definitely a hard day on the kids. But it was an amazing day at the same time. (But did I mention exhausting?) I find myself at a loss to put how I really feel about all of this in pretty prose, but I know sometimes that blogging about parenting a child with special needs is simply posts of small details written in exhausted gratitude from a day of testing that ended on a happy note (with cookies...chocolate, of course.) Maybe I will be able to write another post in a few days that says this all a little better.

But right now? I just want to say YAY ADDISON! Of course hearing loss wouldn't have changed our love for her- or our willingness to help her, but it was just such a relief to hear something that we get a break on. Something that won't be a struggle for her. And perhaps- something that will continue to help her build her vocabulary to the point where she can one day communicate with us.

Also- her sedated vision exam lined up almost exactly with what the doctor got with a wiggling, awake Addison a few months ago. (I was impressed.) We will be adding glasses to our lives very soon (but glasses that should actually HELP Addison this opposed to the pair we got when she was one that wasn't even close to being her prescription...)

Good day. Long day. Helpful day. Exhausting day. Celebratory day. Early bedtime day.

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