School is Cool

Quick update from Mr. Kindergarten. According to all his teachers Mr. Personality has turned on the charm and is loving school. Can I get an Amen? The teachers were aware of our concerns from the summer and kindly provided us with two emails on the first day letting us know that he was doing really well. So far this week, life in the mainstream for Math, Science and the specials has been great. I think the security of having the FM system is so helpful and gives him the security to take risks in the classroom. He's loves seeing his friends and getting to run wild on the "big kids" playground that was off limits last year.

Two trips to Hopkins in the past week gave us good news in that his hearing hasn't gotten worse in his left ear and his CI audiogram is solidly in the mild loss range. His new Cadillac Nucleus5 processor is on him now thanks to his fabulous new audiologist Dawn. She was recommended from our good friend/audi Jen Mertes and we are thrilled. Tommy was in a foul mood after a long day and she just rolled with it and seems to "get" the boy/growling bear. We're also thrilled that she will be handling his hearing aid ear as well so we don't need separate visits for each ear! I'm always up for a change and haven't regretted speaking up to get the best service providers in place for this kid. We're so thankful we live in an area where choices exist.

This will be a big year for our little man.

Stop the ride, please.

Cold Play has it right. "No one said it would be easy, no one said it would be this hard. Take me back to the start." As I finished writing the last post and took a few long exhale breaths, the rug began slipping away from under our feet. The short story is basically Tommy has decided that the rollercoaster is his ride of choice and we better strap ourselves in for the long haul. The Summer started with an almost instantaneous regression in social skills, pragmatics (ie. growling instead of requesting something), and the spark in his eyes was no where to be found. We chalked it up to the end of the school year blues and we're still banking on that as part of the problem. Tommy lives for his buddies and was doing so well with his hearing friends we assumed we were on the right track, but this summer a divide grew that was tough to watch. The upshot was that held it together in his summer school class in July so we're hopeful that he just LOVES school. The top of the hill, so to speak, was our trip to New York City. We couldn't have had a better time and it was by far our favorite/easiest vacation. Since school has ended we've noticed his hearing/listening decline greatly and currently are in the throws of "exploring" what's going on with his CI and left ear. My gut is telling me that his progressive hearing loss is gaining speed and his CI needs a new map. Couple those things with the 100 degree heat (not friendly for hearing equipment), a malfunctioning hearing aid, constant on/off hearing from being at the pool or on a bike and we've got a nice little storm brewing.

Fingers and toes crossed that Fall will bring good news and lots of smiles for our Kindergartener.

What a difference a year makes...

As we approach the year anniversary of Tommy's CI surgery so much has changed for him and for our family. For starters, the only way I can describe this child is exuberant, and I don't mean that in the teacher report card comment kind of way. He truly has a huge spirit that lights up the room. The past year we've seen him grow from a terribly frustrated little boy who was locked in a space that despite the best intentions and efforts from staff and parents alike, he was still a mystery to us. We knew he was a whip smart kid that didn't have the range of language skills to fully tell us what he knew or felt. Now we're looking at a completely conversational child that is insanely social and filled with pride about his CI and hearing aid that "help him hear better." Switching schools turned out to be such a godsend and the staff at Rock Creek Valley has embraced Tommy from the moment he sauntered into the classroom. To say that he's thrived is an understatement. He needs/loves the routines, the ten teachers, the cafeteria lunch, his speech teacher...it's all been incredible. He loves his Deaf friends, his Hard of Hearing friends, and his hearing friends all equally. His girlfriend has bilateral pink CIs although he has developed a recent flirtation with one of his hearing friends, Ava.

Crying tears for our son in the early days, months and years was a common occurrence especially because we didn't have a long term outlook that would guide our expectations. We just had the day to day successes and struggles. Now just one year from his CI surgery we can see clearly for the first time. Tommy Brown is going to be just fine.

I just saw this on a friend's blog...Talk is cheap, unless you're deaf, then it's priceless...

This edition of tommyshearstory is dedicated to the incomparable Cecelia Wett. A few rare birds are meant to teach kids like Tommy. Ms. Wett is one of them and we're so thankful.

busy boy

It's been a good long while with lots to write about, but the desire to put it all down escaped me. Somehow the energy of the summer and the exitement of new possibilities was replaced with the reality that much remains the same. Hard work, ups and downs sprinkled with moments of awe pretty much sums it up. Our littlle man continues to impress us with his energy and stamina while giving us a lot to be proud of. He's asking questions, using "because", and has meaningful back-n-forth conversations/arguments with anyone who challenges his world view. Big steps that became doable with the help of his amazing new technology.

More than a few times over the past months we've seen the old pattern of huge bursts, regressions, mood swings with equipment problems and the ever present sinus infections. The road always leads us back to Hopkins. Next week we'll be taking him for a full sinus consult with Dr. Lin to see if we can get to the bottom of his 6+ sinus infections per year and shockingly horrible CT scan results. Although we're grateful for knowing his semicircular canal syndrome is no longer an issue, all this CT / cancer talk on TV as of late gives me agida. Tommy has had 3 CT scans, the first being at 3 weeks thanks to a sad excuse for a pediatrician. We're very grateful that he's doing well, but speaking from experience (as I sit here with an imaginary person sitting on my face) it's so hard to focus, listen, talk etc. when you have sinus infections that cause your eyes to swell. Coupling that with the congestion that renders his hearing aid ear almost useless just keeps us in the rollercoaster pattern.

Long and short is that we are damn lucky to have a kid that rolls with every punch, loves every teacher, therapist, friend, and thinks the rotating door entrance at Hopkins is supercool. When big brother Matthew struggled through a similar sinus/runaway ear infection/holy cow I can't hear a thing issue...Tommy asked him "Hey wanna use my cochlear implant?" These two boys never cease to amaze me with how just how close they are and how lucky we are to watch them grow up together as best friends.