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'