About That Storm

Well, I mentioned in my earlier post about the storms I have been weathering. Here's the deal. Last summer, I was having suspicions that Faith was having trouble hearing. No one else saw it and basically made me feel like I was being paranoid because of my own loss. I even took her to the pediatrician specifically for a hearing screening. They said she did fine at first then "lost interest" but they were sure there was nothing to worry about. It didn't help because I kept seeing things that I thought were not quite right and I kept worrying. Mothers know these things. In February, we had her annual check up and I was determined to get a referral for a hearing evaluation. The ped. beat me to the subject when he recommended speech therapy. I told him I really thought the problem was with her hearing and was showing in her speech so he referred us to the Callier Center.

A week later we were at Callier, an absolutely precious audiologist worked with Faith through a battery of tests: tympanogram (how the ear drum responds)-normal, OAE-refer (sounds emitted back from the ear, refer means it wasn't normal), then a sound booth test using play resonse with another audiologist. Even though I thought Faith had a problem, I was stunned as I saw the pattern developing on the audiogram throughout the testing. Faith has bilateral hearing loss, meaning both ears are affected. She started near normal (20 dB) with lower frequencies then plummeted to 55-80 dB above 1500 Hz. Well over half of her hearing range is in the levels moderate or severe loss. I felt like someone had punched me in the gut. This was much more devastating to me than learning of my own hearing loss. In a whirlwind, the audiologist was talking about hearing aids, ear mold choices and all kinds of things I just wasn't ready to hear. We left with impressions already made for ear molds and an appointment for her to come back to be fitted with loaner aids until I could wade through insurance stuff. The precious audiologists recommended testing Ella as well, so we set an appointment for her too.

In the time between our visits to Callier Center, Faith saw my ENT. He ordered a whole slew of tests to rule out different syndromes and causes: CT, EKG, US, blood work, other lab work... lots of stuff that is just all around scary for a 4 year old! I was a nervous wreck and Faith got to where she was asking each night, "Do I have a 'pointmen 'morrow?" We even had to do the CT twice, the first time we tried it, Faith just freaked out because they tried to strap her to the table. I don't blame her one bit, it's scary, but since she couldn't move at all or the test would be useless, they had us come back and put her under sedation. Talk about a stressed out Mommy - I HATE having to sedate my kiddos for anything!

I do have to share a quick story about the EKG. When the tech was hooking up all the leads, she was explaining to Faith that she was going to measure the electricity in her heart. She asked Faith, "Do you know you have electricity in your heart?" Faith got a very doubtful look on her face and said, "Nooooo, I have God in my heart!" Out of the mouths of babes!

If there was a turning point for me in this journey, it was our second visit to Callier Center. The day Faith got her loaner aids. Her face absolutely lit up and she was so excited she could hear! She kept naming all the things she could hear, like the people talking in the hall. Everyday normal sounds were amazing to her! I remember how she felt, hearing my car blinker or my computer keyboard after getting my own hearing aids, only hers was different because she most likely has NEVER heard these things. Words cannot describe her pure joy in hearing, something so many people take for granted. I know I did before my own hearing loss.

As wonderful as that moment was, it was short lived as I joined audiologists working with Ella in another room. My mother had been with them, but they weren't having much luck getting Ella to cooperate so we traded kids. I was able to get her to quite down and take interest in the booth test but as it went on, my heart began to sink. There were frequencies she definitely wasn't responding to. The OAE was similar to Faith's-refer. After the tests, the audiologist delivered the news I already feared. Her hearing was apparently well below normal, in a pattern similar to Faith's (and mine). Because of her age, she wanted to order an ABR, which measures brain response, to confirm the results. I now have two daughters facing life with hearing loss.

It didn't take long to type out the update but it seems like it has taken forever to get here in real life! LOL! And we still have a ways to go. Tomorrow is our follow-up with the ENT to hopefully get some answers from all those tests. We have an appointment next week with a closer audiologist to talk about ordering Faith's permament aids. Ella has her ABR scheduled and her first appointment with the ENT, which I am thinking will probably be followed by a battery of tests like Faith. We have also already started the process to get services through the school district.

One of the first questions others have asked is, "What about Foster?" We did have his checked to be safe and get a base line normal for future comparison. He tested pefectly normal, although he did explain to the audiologist that he already suffered from male-selective-hearing when asked by his mother to do things he really didn't want to do. That kid!

Thank you so much for all the prayers! I know without a doubt that prayer is one thing that has sustained me over the last few weeks. I know God is in control. The verse we chose for Ella's baby dedication reminds me of that:
8 "For my thoughts are not your thoughts, neither are your ways my ways," declares the LORD. 9 "As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. Isaiah 55:8-9