The big fat appointment

Today was a big day for Tommy and his big brother gave him an appropriate send off that included, "Make sure she takes you to the toystore after your doctor's appointment." nice. The long and short of it is that three years ago we were told that he had four holes in his semicircular canals (the balance portion of the inner ear) that will cause him some pretty horrible symptoms later in life. Superior canal dehiscence syndrome is rare and dehibiliating, but coincidentally the chief of Otolaryngology at Hopkins named the syndrome. We got some decent information and were sent on our way to "watch out for head trauma, airplane rides, coughing and car accidents." Thank you very much. During my googlemania phase I quickly learned that there wasn't a support group or even a parent of a child on the planet that showed up on the internet...If you know me well, you probably remember the panic in my voice that lasted for many months. It was like being hit with round 2 just a few short months into adjusting to life with a child with hearing loss. We quickly adjusted and relished in the fact that our ten month old was walking and showing no signs of balance problems whatsoever.

From the outset, Tommy's profile was unique in that his loss was very lopsided - profoundly deaf in the right and a mild loss in the left. He also has a rising loss which is great for speech and atypical in kids with congenital hearing loss. Over time he has continued to lose hearing in the lower frequencies to the point where he has a severe loss rising to mild in his good ear. We've noticed him struggling more and more over the past several months and knew we were probably entering "a be careful what you wish for" phase.

Fast forward to today....we are in the CI candidacy process due Tommy's progressive hearing loss and anxiously awaited the results of last week's CT scan. The holes are completely gone and the syndrome is being wiped away from his profile as we speak. We knew it was possible for the bones to thicken and that's exactly what happened. Amen.

The part two was the real purpose for our visit with cochlear implant royalty, Dr. Niparko. Was Tommy a candidate or did his good ear keep him from gaining access to bimodal hearing? Well, the answer came quick and was a resounding, "Yes, he qualifies and is an excellent candidate." Dr. Niparko would like to see him implanted by early Summer. All the pounding the pavement and hours in the car to provide this little man with the best schooling and services can't compare to what that one sentence will do for him.

This is one of those days where I really feel like I am exactly where I'm supposed to be. We live here surrounded by some of the best schools, services, doctors, CI/hearing loss families galore and gosh darn it - we're grateful.

To blog or not to blog, that is the question

To sit down and start this process seems hmmmmm...indulgent and self-important, but I'm willing to jump in for two solid reasons.

1) As a Mom of a hard of hearing child who doesn't quite "fit" the typical profile I really hope someone finds the blog who has either walked the path ahead of us or is a few steps behind.

2) I don't scrapbook or print digital photos regularly so, it's a way for Tommy to be able to understand his unique "hearstory." -And as a daughter-less mother, hopefully he'll be impressed enough with our dedication as parents that he won't let us sit in the corner of the nursing home for too long.

So here goes nothin'