Happy 7th brithday - and the past two years...

Today is Tommy's 7th birthday and can't help but being reflective on this day - with a side of upset stomach.  June 22nd brings me back to his arrival and shortly thereafter the "failed" newborn hearing screenings in the hospital and the then the quickly moving train than followed.  The unknowns of the early days, months and few years were enormous.  Did he hear us say "I love you?", Would he learn to use spoken language?, Where would he fit in?. Fast forward to today and we have a fully conversational kid who has managed to use his determination and smarts in tandem with technology to compensate for his significant hearing loss.  He can lip read like a secret agent, advocate for himself when he misses a deeper language concept, and is able to read, write and speak like a champ. 

Against some popular opinions we chose to do kindergarten year #1 as a half DHOH/half mainstream program at Rock Creek Valley and it was an incredible year for him.  Mrs. Strand and Ms. Thek were phenomenal and truly can't say enough about the oral program there.  Because he did so well, we made the decision to move him to St. Patrick's and jump into the mainstream headfirst with no floaties.  With all of his gains, he was desperately missing the social aspect of life that comes with being part of a classroom.  He wasn't able to get that at RCV because the kids came from all across the county and wasn't part of the "typical" homerooom.  He was increasingly growing aware that he didn't have many playdates or birthday party invites coming his way.  So, after agonizing for many weeks, our gut told us he was ready and knew that a second year of K would be the best shot for Tommy to feel socially confident with his peers.  He still wasn't quite up to speed (literally) with his expressive language and being in a class of 25 was going to be a huge jump for him in every way.  As intense as the public school program was, K at St. Patrick's was going to give him room to grow in his social language while already having the strong academic background from the county in place.  

Year #2 kindergarten - As he dressed in his school uniform for the first day of school this past August, it was a stream of tears for days that wouldn't let up - on my part, not his.  Never in a million years could I have pictured how emotional it would make me to see the two boys getting ready for school together and for Tommy to be "just one of the guys."  This past year in kindergarten at St. Patrick's was his time to shine and grow and he did just that.  For me it was back to the old feeling that I'm on my own again without a "team" behind him, I was the sole troubleshooter and advocate, but thankfully the ride was filled with our typical bumps and nothing out of the ordinary for us.  Tommy also had a great K teacher, enjoyed (mostly)being pushed by Patty MacTigue his resource teacher at St. Pat's to keep his writing and reading skills moving and liked hopping on the bus to the neighborhood public school for speech/language.

As the school year came to a close we entered another "be careful what you wish for" phase and now our biggest worry is getting him to understand that school is not the time to hone your stand-up comedy routine.  Save it for the cul de sac.  All kidding aside, I do have a pit in my stomach again as we await to see if he's able to get on board with keeping his silly side in check as well as not pointing out when teachers have made mistakes.  So far we haven't seen a lot of the social skills difficulties show up in friendships that are very common in kids with hearing loss, so we're thankful for that.  As 1st grade is approaching he will share the stage with a room full comedians and know that he has to work so much harder to hear every word, every instruction, etc. so time will tell on this one, but again in the grand scheme of things we are very blessed.   Tommy just had a big birthday party with all of his friends and let's just say he's definitely "one of the guys." 

Happy 7th to our not so little man.  You make us proud every. single. day. 

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.

Wearing a jock strap on your head is way cool

Here's a few pix of Tommy at home sorting through all his loot. We chose to take the pictures while he was comfortable - thanks to tyelonol with codeine.

All in all, a very good day. The surgery was approximately 1 1/2 hours, Dr. Niparko and his team got "full insertion" of the implant, Tommy woke up really easily and we were home by noon. The surgery got moved up a few hours which really helped on all fronts. We were at Hopkins by 5:30 am and he enjoyed hanging in the pre-op room filled with toys. He was familiar with the scene from his ear tubes surgery. We were anticipating a huge fight with the big ol' bandage, but he's taking it completely in stride. Dr. Niparko told us to prepare for searing pain and that appears to have been right on. Thankfully, by 11:30 p.m. he was out for the night and has been codeine free since then. It goes without saying, but if you ever need surgery for anything, Hopkins truly is an amazing place. Everyone from the checkin staff, pharmacy, doctors and nurses couldn't have been nicer. The place runs like a finely tuned machine and you can actually feel that you're surrounded by the smartest group of docs around. Sometimes during all the office visits at the Caroline Street Outpatient Center it can feel a bit institutional, but the surgery center is incredibly warm and I swear there's a palpable energy in the pre-op room. Or, maybe I've watched too many episodes of Grey's - surgeons in pre-game excitement mode.

We're really grateful for all of our friends, family (especially Nana who's been here since Tuesday), and all the supportive messages from near and far.

Grazie

ISO Nerves Of Steel

I am perfectly willing to acknowledge my long list of shortcomings. Going through the candidacy process is bringing them front and center for all to see.

Yes, I'm the mom who gives the Principal-pull/lift by the elbow and run out of doctor's offices, (stores, Starbuck's, and restaurants for that matter) when the boys are spinning out of control. Quite literally spinning - as of late their game in public they like to play most often is Planets...as in spinning planets with colliding orbits. Elderly, store displays, or myself (the Sun) should take cover.

Yes, I'm the mom who loses hearing aids only to find them in the bottom of my not-so-tidy purse after calling Jennny and telling her they're "officially" lost. We've been playing this game since freshmen year in college when I'd lose my super fashionable gold hoops on a daily basis.

Yes, I'm the mom that makes lists on my blackberry of all the appointments, follow-ups, fax numbers, therapist info etc only to have my blackberry wash up on the beach in a pile of sand. Somehow, it managed to work - aka divine intervention.

Yes, I'm the mom who has to leave the playground/or go commando at Hopkins because her son has chosen to regress and needs a new set of underwear...See above for lift-by-the-elbow maneuver.

Yes, I'm the mom who screams at the top of her lungs trying to stop the Greco Roman style wrestling that goes on 24/7 to avoid "head trauma."

Yes, I'm the mom who argues with medical office staff who are clearly clueless. This only happens after my kill-them-with-kindess approach fails.

Yes, I'm the mom who occasionally faxes paperwork to the doctor's office on the blank side.

The list could go on and on. I'd like to think I'm also the mom who stops and repeats myself a million times a day so he can hear and understand his world. I'd also like to think I'm the mom who gives hugs, kisses and cuddles while reading endless piles of books. Finally, I'd like to think I'm his mom for a reason. I may be overwrought and impatient, but my internet OCD has uncovered both incredible friends and resources along the way.

The bottom line is that both of our boys require more patience than I was given, but I'm doing the best I can. My elevated blood pressure is a given, but try to cherish the moments in between the chaos.

As we pack for Hopkins, I am reminded that many families we see there have life threatening surgeries and limited outcomes ahead of them. We are so lucky and blessed to have our strong, willful, affectionate, pisser of a little man. We hope and pray that although the road ahead is predicted to be bumpy, Tommy's CI will be another blessing for our family.

It's apparent that my nerves are clearly frayed as we anxiously await surgery on Wednesday. Many unanswered questions remain and still another audiological test for tomorrow. By tomorrow evening as we settle into our hotel room in Baltimore I hope we'll be feeling a lot more reassured than today. As of this moment, we haven't officially picked out his manufacturer, colors for all his gear (which is more of a big deal than it sounds), don't know anything regarding post-op, let alone activation questions. Activation takes place on July 7th with many appointments after that.
We've been preparing Tommy with coloring books, his own koala bear with a cochlear implant and encouraged that he's so excited to "get a CI." The hard part is that we can't fully explain that he won't actually get the CI for an entire month. All he's going to know is that he's wearing a hellish bandage and can't go swimming for awhile. (still yet another question).

Hope to post some post surgery pix later in the week. If you're the praying kind- feel free to throw some Tommy's way.

Maybe you don't know who you're talking to...

We just returned from our psychological evaluation at Hopkins where we were told no less than 10 times in 10 different ways that our child should be at River School next year. Yes, River School is an amazing place, but frankly the hard sell was off- putting and unwanted. We owe both my sanity (supportive staff) and insanity (hellish commute) to River. Tommy has benefited from parent/infant, speech with Meredith Ouelette, audiological services from Jen Mertes, generous scholarship support from Nancy Mellon, and amazing teachers along the way. If we weren't talking about being in the car next year for 3 1/2 hours per day, and/or Tommy wasn't significantly behind in language skills we would be there next year. The bottom line is that we want to capture some of his areas of weakness now before the academic pressures of kindergarten set in. Oh, and the DHOH preschool is five minutes from our house. We've had a rocky road with County services, but last week at our IEP meeting we couldn't have asked for anything more. I have great confidence in Tommy's "staff" and whether or not we believe in every detail of the model of his new preschool is almost a mute point...pun intended. We know our kid, I know the system, We know what we're doing....telling us to "Expect the best, but prepare for the worst" is not helpful. I'm only happy that we're at a place where we're comfortable with our decision because if we weren't- we would have left Baltimore in tears.

We also have another young son with a schedule and a life of his own that we need to support. It's easy to say from the comfort of a medical office what is best for a child, but put the mother's shoes on for A DAY.

June 3rd sounds lovely

We were firmly wed to the 18th, but received a call that June 3rd would be our date instead. In the grand scheme of things not a big deal, but in the immediate term of getting all our ducks (ie. appointments) in a row - just a little stressful.

On a side note, Tommy is happy he's getting a cochlear implant like his friend Christian. I can actually picture the two of them as teenage boys picking up chicks together...their CI's will be their calling card. They look like little linebackers now and hope they will grow up together as "buds."

June 18th...

Well, one day makes a difference. We received the call - June 18th is surgery day. We need to report to the hospital by 6:45 a.m.. Tommy loved hanging out at the Admiral Fell in Fells Point the night before his CT scan so, we'll just do it again. What can I say, he has good taste in pizza...he was a huge fan of BOP. If you're somewhat of a local you may remember some foggy late night dining there.

I assumed I'd have a great sense of relief, but instead I just feel like I need a Xanax and a Zantac. Hopefully zoning out to some reality TV will do the trick instead.

waiting...and more waiting

When I first had the idea of doing a blog for Tommy I assumed the information would be fast and furious as we quickly marched toward surgery. Ummm, yeah - not quite the case. After two more appointments at Hopkins that included a mini-quarantine for "suspicious travel to Mexico" we are no closer to surgery than we were a month ago. I do well with a plan, not so well with the entire Summer in flux. I was hoping to have the surgery in time for Tommy to participate in ESY (summer school of sorts) at his new DHOH preschool to help ease the transition before activation and the start of the school year. As each day goes by without a phone call I'm realizing that my plan quite probably is a pipe dream. My biggest fear is activation close to the start of school. The stress of the new sounds and adjusting to natural hearing with electrical hearing is the big mystery....How well will he adjust? Will he reject the cochlear implant? Will he be terrified? Watching him struggle with the simplest of tasks it's clear that he NEEDS a CI and am grateful that the "deaf enough" card has been granted. Let's get on with the show already....

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'