All in the Family

Ok so it's been awhile.

Quite a few things have happened. I have a 4 month old! I have a 4 month old with personal hearing aids. I also found out that BOR syndrome runs in my family. BOR stands for, get ready, "branchiootalrenal" syndrome.

It can affect internal and external ear structures, kidneys, and then some people with BORS have branchial cleft cysts which are basically disconnected sinuses that look like tiny holes in a person's neck. Madeleine has mild-moderate hearing loss, an ear tag on one ear, an ear pit as well as what they call a cup ear.

I have moderate hearing loss in my left ear and an ear pit on my right ear. Several of my family members on my mom's side have a mix of these symptoms; however, Madeleine definitely got the worst of it. Thankfully none of us have anything abnormal happening with our kidneys.

This syndrome affects 1 in 40,000 people therefore it's pretty rare!

I'm going back and forth with being upset and figuring that our situation could be so much worse. She gets to visit with a teacher who does play therapy with us in our living room. There's a neat preschool in Seattle that's intended for kids who are hard of hearing so they learn how to effectively communicate before going to Kindergarten. Such a cool program!