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.

Good things come to those who wait...

August was a month of dips and lows for our guy who became increasingly sensitive to his CI. Putting on his "equipment" in the morning was a tear filled traumatic experience for all involved. His speech took a nosedive and we were all a bit confused. This took us all by surprise since he was doing well, but as the maps (programs) were modified it was just too much for him to handle. Thankfully, by month's end we had a few strategies in place - putting the CI on during a giant snuggle, sliding upward, lowering the program to #1, and making sure the environment was completely quiet. Our mapping audiologist doesn't scream "I love boys" so we will continue to monitor if she's the right fit for our guy.

By September, Tommy was literally jonesin' for school. Apparently he loves the routine, just like his brother and frankly had enough with life at the pool and beach....poor kid. After our incredible experience with ESY (summer school for kids with special needs) we were holding our breath on how his transition with a new set of teachers, specialists, kids etc. would go. We were thrilled to find out his teacher was the one we saw during our DHOH preschool tour that we absolutely loved. Let's just say her humor and enthusiasm is just what Tommy needs, not to mention his parents.

Long story short, Tommy is digging full time school - me- not so much. I miss my boy terribly, but seeing him bound off that short bus with an ear to ear smile makes it worthwhile. He's happy, doing well and has a girlfriend! He found a pretty girl with "curvy hair that has a CI just like me." He writes her name everyday about 100x and now adds Brown to her name...Sonia Brown is on every piece of paper and wipey board in our house. He's over the moon with excitement for a playdate with Sonia at our house this weekend. Meanwhile, I'm kicking it into overdrive with online sign language classes so that I can communicate with her mom who is Deaf. To this point, I could ask her if she wanted a cookie, but not much more. I'm quickly learning and hope to continue.

The latest piece of news is that after brainstorming with myself I decided we need to get his hearing aid on sooner rather than later since any attempt produced a huge protest and more tears. Bottom line was if we couldn't incorporate his hearing aid into his new hearing we wouldn't have accomplished our goal. 2 ears, 2 types of hearing. We knew we were asking a lot - his brain needs to process acoustical hearing and electrical hearing and decipher what the hell it all is. After a quick stop at Hopkins to see our hearing aid audiologist we were able to get a quiet program that has resulted in him instantly wearing both pieces of ear gear. Woot Woot.

Oh, our 4 year old hard of hearing/deaf son is reading. Out of nowhere he can sound out any consonant vowel consonant word you throw at him and his list of sight words is growing by the day. It's amazing to watch.

I've always said that in the grand scheme, this is all a piece of cake. Seeing our friends go through incredibly difficult times as of late once again makes the point clear. Every day that your kids, family and friends are healthy is a damn good day.

peace

We're live....

After a long June filled with crappy luck, July is shaping up to be a banner month for little man Brown. Last week was our activation week and it honestly feels like a month ago. From the first appointment he's handled everything like a champ. He definitely "heard" the beeps, clicks etc. during the initial turn-on and just needed some hugs to get through it and quickly went back to his lego building. One of our biggest fears was that he wouldn't be interested/toss his new gear in the garbage. Thankfully, our flashback fears from his hearing aid tossing toddler days were unfounded. He seems to dig his equipment and is very tolerant when we need to reposition it so, we're thrilled to say the least. At his third appointment on Tuesday the audi said he's at 30 db already. We're noticing a little less "what???" and today he definitely heard his Letter Factory DVD from two rooms away. The funniest story so far is that as we speak, he's singing along to The Ting Tings - "That's Not My Name."

Tommy also started his new school last week and loved it from the start. His teachers are amazing and the kids in his class are all kiddos with hearing aids or CIs. We couldn't be happier with his teachers and he seems to be thriving in a way that we haven't seen in almost a year. The pit in my stomach finally feels like its getting smaller with every day -

Now if we could only wipe off some of that Irish/Italian attitude...

Good News, Bad News

The good news is that Tommy quickly got off the pain meds, slept through the night from the very first evening and in general has done really well. The bad news is that we are on house arrest due to a massive case of the hives. After chit chattin' with Dr. Niparko for the most of the weekend, (and lots of email pix), it's been determined that he is experiencing an allergic reaction to the antibiotics. I was skeptical at first, but the worse it has gotten and the more widespread, the better I feel. In the beginning it was near his implanted ear, but now he's covered to his knees. He looks absolutely terrible, but isn't itchy - maybe a little bitchy, but not itchy. Thankfully, he's been oblivious to it for the most part. We've been ordered to stay out of the sun and heat...yeah. Just as the weather has gotten nice...no pool was bummer enough.

Fingers crossed that the hives get out of his system soon.