What's in a word? Words have the ability to move you, one way or another. Sometimes good, sometimes bad. We all have those words that, for whatever reason, have an effect on us, no matter how silly. One that was unexpected to me, as a parent, was hearing the "F" word ... FLUID. I cringe even as I write it. To most people, the word is no big deal. To me, the word brings sinking feelings, confusion, disappointment, uncertainty, annoyance, and road blocks.
The word, "fluid", has been a reoccurring theme, especially over this past year. From day 1, it was something that we held on to as hope, that it was fluid causing Ike's hearing loss. When he had his initial tympanometry test, it was normal, indicating there was no fluid. Typically this is a good thing (you aren't supposed to have fluid in your ears). But when people are telling you the hearing loss is most likely due to fluid and you are assuming/hoping that is the case, finding out there is none can give you a sinking feeling.
This past year has given us a different perspective on "fluid". Once we learned Ike was born with permanent hearing loss, we have been on a journey to help him listen and speak on par with his peers. This means giving him access to as much speech and sound experiences as possible. We do this using technologies like his hearing aid and his Cochlear (CI), paired with listening and spoken language (LSL) strategies. You know one thing that can prevent all this from happening? FLUID.
After Ike got his CI activated, we saw incredible progress. It took a little time, but it was obvious that with his devices on, he could hear and respond as any hearing child would. What we started noticing, however, was that he wasn't responding as expected when he was only wearing his hearing aid. Had his hearing gotten worse in that ear? Was his CI just THAT much better? Did his hearing aid ear need a CI? Was it something else? These questions drove us crazy, and launched us on a 6-7 month investigation to find out.
Getting answers to these questions seems easy ... it wasn't. To determine if he had indeed lost hearing in that ear, we had to run a series of tests. These included booth tests, Cortical Auditory Evoked Potential Testing, and tympanometry (tymp) tests. The frustrating part? The tests were mostly inconclusive. We would get some results, try the test again a few weeks later to verify, and Ike would have fluid in his ear. With fluid in the ear, these tests can be affected dramatically, so the results would be inconclusive. Was his hearing worse? Or was it just the fluid? Hard to tell.
We BATTLED this. I can't even remember how many tests we did. (Bright side? Ike got REALLY good at booth tests.) It got to the point where, when he got his tymp, I would hold my breath. If he didn't have fluid, we would celebrate! If he did, my heart sank, because that meant the tests couldn't be relied on ... and we would have to do it again. I never imagined hearing the word, "fluid", would give me so much stress!
After several appointments with the audiologist and our ENT, we made the decision for Ike to get tubes put in his ears. We had been putting it off to see if the fluid cleared up on its own, and to avoid another surgery. But clearly, he had issues with fluid building up in his ears, and, at 16 months, he was also not walking yet (fluid can cause balance issues that can effect walking). We needed to know for certain if fluid was the cause of his decreased hearing loss in his hearing aid ear before we moved forward with a more major intervention of getting the second CI.
After his tubes surgery, the doctor said there was so much fluid in there, that it oozed out like a huge pimple popping (think Dr. Pimple Popper!). We have been able to do a couple more hearing tests since then, showing his hearing was back to his original levels (thank goodness!). It was such a relief to finally get an answer.
We still have our struggles with fluid... currently, it is all the oozing boogers that come out of his ears ... and I am sure we will have more. I still have a reactionary small panic attack when I hear the ENT or audiologist say the "F" word. In my mind, I think"UGH not again!" But it is getting better.
Reality is, we will all go through seasons that are frustrating. There will always be things we cannot control and things we cannot change. Take it step by step and focus on what you CAN do. Then power through, keep trying, and know that this too shall pass.
留言