An Unexpected Beginning: Finally getting somewhere.

We finally have answers to the mystery of Kaycie's ears. Well, some answers and more questions, but we are finally making progress. Since it has been 6 weeks since this mystery started, let me back up a little bit.

Kaycie has always been difficult to get out of the house. When I say difficult, I mean that in the beginning, she would fuss when we took her places. I figured it was just typical baby behavior and didn't think much of it. In the past 6 weeks or so, however, things got worse. We could literally not take her out of the house without her getting progressively more aggitated within minutes. Not just fussy baby aggitated, but absolute meltdown-screaming like she was being tortured, unable to calm her, etc. It was like she was terrified. I began to realize something was not quite right. I don't know if it was the lights, the sounds, the commotion. Long story short, the doctors couldn't decide yet if it was all related to her hearing, or if she has some other sensory processing issues going on.

The reason I even mention this is because in the past week, Kaycie's temperment completely changed. It started with a trip to the grocery store. I really needed to go and Matt was at work, so I decided to brave it with the kids. We were there for over 30 minutes and Kaycie was awake and happy the whole time. Have you ever seen a mother with her kids tearing up in the checkout line at the store? Yep, that was me. I found myself finding excuses to take them out the rest of the week...I realize I may have been pushing it, but every single trip was a success! I think in my head I was reasoning that her hearing must be getting better. It was the only connection I could make. That said, for 5 weeks while waiting on this procedure, I had prepared myself for the news that Kaycie would need at least one hearing aid. Week 6 brought me hope, and I was just sure we would get through the procedure, and the doctor would come out and tell us that she is all better. It could happen, right?

I was nervous yesterday morning, mostly because I knew Kaycie would be hungry all morning. A hungry Kaycie is not a happy Kaycie. I was nervous about her being put under. However, I was not nervous about the outcome. When the audiologist came into the room, she immediately told us the news was not good. For the first time in this journey, I cried. She hadn't even said anything in detail, but I think because I had it in my head that she has to be getting better, I was caught off guard.

Turns out that Kaycie's hearing is worse than originally thought. The biggest part is that they thought it was a conductive hearing loss, which occurs in the middle ear. It can often be treated to an extent. Often conductive hearing loss can partly be blamed on fluid in the ear. She has never had any, so they did not do tubes. Turns out, it is not conductive, but sensorineural. This type of loss occurs in the inner ear. Could be bones didn't form correctly, damaged or malformed nerves, a variety of things. At this point we don't know. It will also not get better. Most likely, it will get worse. She still only has a mild loss in her left ear (30 db loss). The audiologist said that if we plug both of our ears and listen, that is about what Kaycie hears out of her good ear. Her right ear, which was at a 70 db loss (moderate-severe) with her first test, is now at an 80 db loss (severe). She cannot hear speech out of this ear at all, only very loud noises, like fireworks and gunshots. This could mean 2 things. Either she is progressively losing her hearing fairly quickly or this test was just more accurate to begin with. There is no way of knowing.

We were prepared by the doctors to originally expect one aid and the better ear to be able to be fixed. Since that is not the case, the plan sort of shifts. Kaycie will be getting 2 hearing aids. When we thought she may get full hearing back in one ear, things like speech development were not as much of a concern because children with hearing in only full hearing in one ear can develop normal speech without help. It may be a little delayed, but it happens. Since Kaycie does not have that benefit, we will be jumping in to speech therapy as soon as she gets her hearing aids so that we can give her all the advantages we can in developing her speech in these critical years. She will need the extra support and as we figure out what that may look like, we will make sure she has it. I am a reader. I learned with LJ that doctors are great, but arming myself with knowledge is the best way to help our kids. I may be a doctors worst nightmare. I ask a lot of questions, and expect a lot of answers.

For the future...we aren't sure. She will need a CT scan at some point to see if they can pinpoint the source of the loss. However, she will have to be sedated again for it. We are not in a rush to get this done because when it comes down to it, her treatment options won't change.

We are planning on home schooling both kids initially. This has been the plan since well before Kaycie was around. However, I do plan on putting her in preschool when she turns 2. It will mean we will have to carefully chose a school that is not only willing to "deal" with her hearing loss but embrace it and all that may come with it. One day Kaycie could qualify for cochlear implants if her hearing worsens any. However, we will re-evaluate that after she is one, or if we continue to see a decrease in her hearing. Right now, her better ear is still good enough that an implant in her worse ear would interfere with the hearing she does have in her better ear.

As I said before, I am emotional about this, but we are happy. Our baby is healthy. She may have to do a few things a little differently, but we will learn as we go. We can't help but feel, and we just know, that God will use her in a special way. We are so excited to see what that is.

At Kaycie's 6 month appointment a few weeks ago, she was about 15.5 pounds, and she is hitting all of her developmental milestones...she is currently working on sitting. She doesn't have it down perfectly yet, but she is able to sit for short periods on her own.