April 12, 2012

It felt like the longest week of my life and the rest of April will probably not be much better. My ongoing inner dialogue is like a ping pong game going back and forth on exactly how to cope and if I even need to. I think I am ready to share this now.
Originally written on Thursday April 4, 2012
SJ went to the ENT specialist today and had her hearing checked per her doctors referral. I knew that this was a routine procedure for delayed speech. It was #8 on my list of things to do today. Simple as that.
From the moment I walked in the questions poured out- Does she have frequent ear infections? Is there a history of hearing problems in your family? Did she have a hearing screening as a newborn? When I answered no to all of the nurses concerning questions she asked, “So do you think that she has a hearing problem?” I answered quickly and calmly “No. No, not at all. We are just here to rule that out before moving onto some kind of therapy.” Everything was great and they guided us into the little booth where they did some behavioral tests, like checking if the child responded to toys and lights along with various levels of sound that would come from the left or right. She was extremely cooperative and responded great to the visuals, but did not react or move, or look for the sound at all. Not even when it was as loud as feed back coming through an amplifier. It was a little disheartening, but I didn’t think too much of it. Maybe she was just distracted by the flashing toys?
The Doctor did a Tympanometry test, which is where you insert little ear buds to check and see if there is any interference to the eardrum, like fluid or wax. She did have a minor ear infection, but not enough to cause her to completely fail the hearing exam. The doctors and nurses were concerned, to say the least. They asked more questions and told me the results were not looking good, and it would be critical to send her to a more specialized facility for sedated testing. In fact the Doctor walked me to an office where he asked the surgery coordinator to get a pediatric audiologist referral as soon as she could because this little girl here has severe hearing loss. And when the lady made the phone calls that is what she classified her as, “a two year old with severe hearing loss”. I sat there in complete denial thinking this is not happening to me. I have a little boy that is severely far sighted that has amblopia and strabismus, it doesn’t make sense for me to have another child with an impairment. Somehow this was logical in my mind.
It was also logical for me to think that the doctors are overreacting and the results of the test were not conclusive enough to label my child. Further testing is definitely in order, and a welcome relief for sure, but I just am not convinced that SJ is deaf. J and I have talked a lot, and even though I don’t believe SJ has a serious loss of hearing, I can’t stop all the what if’s from swimming around in my head. I still have to wait to hear back from the surgery coordinator about when and where she will go next. I am supposed to find this out tomorrow, and hopefully she will be seen in the next week or maybe two.

April 12, 2012
Since then I found out that we have to wait until May 4 for the testing. So basically a month of knowing something is wrong, but not knowing what it is or what to do about it.

Unfortunately, my initial shock and denial has subsided and we have seen A LOT more red flags. SJ functions and fits in so well that I never even considered she could be hard of hearing, but since the test a week ago its been like looking through a completely different lens and we’ve all noticed there is a lot that isn’t right. SJ just doesn’t seem to respond to voices, words, or sounds at all. It’s a very complex situation and my instinct as a mom feels like she could hear at birth and has experienced hearing loss in the past two years. It just feels like her speech and responses have regressed, but I can’t prove that. Waiting is so difficult.
In the mean time, we recognize that there is a problem and are willing to do whatever it takes to help our child whether that means hearing tests, therapy, surgery, or just good old fashioned parenting. Since SJ can’t talk right now and she obviously isn’t responding to verbal queues we are going to take her sign language to the next level. Before we even knew about this possible hearing loss she could say please, more, milk, all done and sometimes eat (if you remind her of the sign).
I know even with this lengthy post I am only on touching on a portion of the details, so feel free to ask questions, or give any advice you have, or even share your own experience. I’ve thought about keeping this matter private until we know more, but I am no good at putting on a face, so this it. This is my experience raw and true no matter what the test results show next month. I am blessed to have a strong family and community to support J and I as we walk through this. Thank God. Despite what a nervous wreck I am, I know everything is going to be okay.