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.