Ears. . . . .

Micah and I were in the family room, on the 4th of July, I think because I was sewing and he was finishing dinner, which is more of a process than a meal since he's a dining dawdler.

And while he was contemplating his dinner, he looked up and me and asked, "Mommy, will my ears always be this way?"

Oh, holy hell, really?  Today this comes up?  And what I want from him in the way of details as to why this is on his mind aren't forthcoming.

We've talked about this with him before, around the time he was having the atresia surgeries.  Micah was told that the atresia surgeries were not negotiable because we wanted him to have the best hearing possible.  But the microtia repair surgeries are up to him, and at that time he said, "No more surgeries, I don't want big ears."  He was four at the time.

(And then his father decided that it was finally time to have him circumcised, which will definitely give him something to talk to his future therapist about.  But that's a different story about parents who break promises.)

The issue of microtia has pretty much been way, way off the conversational radar since September 2010, which was when Micah had his last atresia surgery.

So I slapped on my parental verbal tap shoes and offered him a quick recap of the past, and told him that going to the doctor to talk about surgery to create bigger ears is entirely his choice. (I try to avoid the words "normal ears", we talk about big ears and little ears.)

He then asked if the surgery to have ears made that look like Thea's ears could be done in Dr. Choe's office instead of the hospital.  And when he was told that it would be at a hospital and it would also not be Dr. Choe performing the surgery, he would need to see a special doctor called a plastic surgeon.

Micah then said that if it couldn't be done by Dr. Choe in his office, he does not want big ears.

Issue closed, for now.

Passports & Microtia

Everyone's US passport has expired (except for Micah's and that's because I haven't applied for one for him yet.)  Yesterday after taking Thea to the OLSAT testing and to soccer practice, we went to the UPS store to get new photos done. Then my evil plan is to send Steve's and my applications in to the Passport Agency and make an appointment with the post office in Princeton Junction to get the kids' passports done.

Right now Thea is in between haircuts, so her bangs are a little low and her hair is long enough to push behind her ears.  While in Maryland in February, Miss Tammy, who gave Thea her very first haircut, trimmed the bangs, but Thea's bobbed/wedged style is the creation of Miss Flo at Snip-Its. Her hair had to be forced behind the ears, in addition to slicking her bangs off to one side with a little water, so that her eyebrows and ears were visible in the photo.  It's a rule, according to the guy taking the pictures, so while we are satisfying whatever regulation the US government (the lovely people who brought you the Shut Down That Almost Was) has for biometric data, we have now a passport photo that looks absolutely nothing like my child.

And I won't even begin to bore you with mine, other than I would not use water on my bangs to get them out of the way, and the guy took about five shots before he got something he thought was acceptable.  (I was in "whatever will get it through the renewal process"-mode.  Do it, I look like this every day and there is precious little a UPS store clerk with a digital camera could do to make me look like Heidi Klum.)

What bothered me was that the photographer kept saying, I have to be able to see the ears.  OK, fine for Thea and me, that's a little bit of fussing and pushing to get hair out of the way.  Good luck seeing Micah's ears, looking at him face to face, you might see a bit of ear lobe off to the side, and then what to do about the BAHA.  People wear their eyeglasses in their passport photos, why shouldn't Micah wear his hearing aid?  To be safe, we had one set of with and one without done and we'll see what happens.

Auricle Gazing, Musings from Micah

Micah (looking at the TV a close-up, side profile headshots of two guys on 'Royal Pains'):  Mommy, are all people's ears the same size?

Me: No, a lot of people have ears that look about the same, and most people have big ears, but all ears are a little bit different if you look at them closely.  And your ears are just perfect the way they are, but remember how we talked about if one day when you are older, if you wanted big ears, Mommy and Daddy would help find a doctor to do it?

Micah:  No, I don't want big ears.  I don't like going to the hospital.  I like all the people who work at the hospital and help people, but I don't like going to the hospital.

Me:  OK.  Go to sleep, little creep, little creep. Good night.

Wednesday

At 10:30 am I've got to be at Micah's school for his IEP review.  This will give us a new document to take to the new school district so that the new district can write its own IEP, which I hope will include itinerant TOD and/or speech therapy services in its plans for preschool for him.  We'll see.  I just hope that our current district finalizes the document before our appointment to register the kids in the new district.

Meanwhile the pediatric audiologist at Micah's school has been testing him, both with and without the BAHAs.  Since she's an educational audiologist, what she says about Micah's ability to hear and function in a classroom setting will have more weight that the ENT's audiologist telling us that he is hearing well.

Then we have an another appointment with Dr. Choe at 2:40 pm to recheck the new left ear, which should throw us out onto the Turnpike right around the beginnings of rush hour.

Out of Touch

Micah and I have been at my mother's in Maryland since Sunday.  My mother had surgery on Monday so we were on hand to be of whatever use, and Mom's home only has a dial-up modem since she is only about three notches above Amish, and I have little patience with dial-up at this point in my technology-spoiled little life.

Monday we had a early wake-up call so we could be on the road to Southern Maryland Hospital by 6:30 am.  Mom was supposed to be there by 7:30, three hours prior to her 10:30 surgery so that she could have some sort of tracer put in that would help the surgeon define if there was any lymph node involvement.

We showed up promptly, got her registered and sat down to wait.  Micah was along for the ride, so we were stuck in the solarium.  Times have changed, thanks to H1N1.  Three years ago Thea was with me for Mom's knee replacement and we were everywhere: the surgical holding area (because Mom's surgery was delayed for hours and hours), the recovery room, and her hospital room.  Now visiting hours are strict and no one under age 18 is allowed beyond the lobby and solarium.  People were wearing masks, but I couldn't tell if they were people who were fearing acquiring the virus or those who had some sort of symptoms.  Either way, the masks did not inspire much in the way of confidence.

We met Mom's surgeon when he came out to a) chastise yet another person (having already told Mom) that she was to have been at the hospital at 7:00 am, no 7:30 am, and to b) to let me know Mom would be sitting in a cubicle by herself because I could not go back there "because of the child" - which he said in a tone of voice one would use to say "blistering case of herpes."  He was not campaigning for the Miss Congeniality award, and I was left with the hope that he had phenomenal surgical skills to make up for his utterly lacking charm or people skills.

And in my mother's defense, NO WHERE on any of the the papers that she was given by either the surgeon's office or the hospital was the time written down.  So fault lies with the surgeon's office.  Period.

Meanwhile back in the solarium, after exhausting the markers and paper, the wooden trains and whatever else he could get into, Micah started working the crowd, making all sorts of new friends.  At one point he was on the loose, circulating throw the room giving everyone high-fives - which most people seemed to find amusing or at least a diversion while waiting to hear from their patients' surgeons.  A lady who sat at our table asked if Micah had microtia, and she had a niece who has unilateral microtia, so it was interesting to hear about her experience (the niece is now 19 years old or so, I think - my brain was only half-engaged in the conversation, the remaining bits were focused on keeping an eye on Micah and how long until we heard something on Mom), but she digressed into nursing, the National Archives, multicultural families and a myriad of other topics that my un-caffeinated brain failed to absorb.

On our way to Maryland we stopped at the AT&;T store because my wall-charger for my cell phone went missing - and my car charger ($4.99 on eBay) died months ago, and my cell phone's battery was near-depleted.  As we were leaving the store, the sales clerk offered Micah an old non-working cell phone, which for about the span of 72 hours was his prize possession.  We took a break from the solarium to go out to the car to find it and got to watch a LifeFlight helicopter take off from the landing pad near the ER entrance.  Micah was fascinated, and waved at the pilots until I thought his arm would fall off.  After it took off, we were back in the waiting area, ready again to torture the assembled masses.

After the surgeon came out around 1 p.m.  to say all had went well with my mother, Micah and I took off to get gasoline for the car and to head over to National Harbor.  We were going to hook up with my cousin who would take Micah for a few hours so I could go back to the hospital and see my mother.  He fell asleep in the car, but after he woke up we parked the car and went down to "The Awakening" sculpture and Micah occupied himself with that traditional little boy pastime of throwing pebbles into the Potomac.

Micah got handed off in the Fleet Garage at National Harbor, getting to ride in Thea's booster seat (exigent circumstances, I know how to get her seat in and out, his requires a degree in engineering which I do not possess) and I headed back to the hospital, arriving there with 40 minutes to kill. Visiting hours for the evening are 5:00 pm to 7:00 pm, and from the number of people hanging out in the lobby, exceptions to the rule were not being made.  So I twiddled my thumbs, figured out how to check my email via my cell phone (who knows what that will cost on next month's bill), changed my ring tone and cleaned out my purse.  And I still had 30 minutes to fritter away after all that.

When I finally got signed in and my visitor's badge clipped on, it was 5:05 pm.  I headed up to my mother's room, almost dreading what I would find - in 2006, after her knee replacement, she looked like death, was out of it from the medication/anesthesia, it was not pretty.

But when I got to her room, there she was sitting up, watching TV, looking pretty much how she did when I last had seen her that morning.  Minus the real estate removed by the surgeon, which wasn't really noticeable given the surgical drains in place.  It was a shock, a very pleasant shock.  So we hung out, she got to eat her technicolor liquid dinner (yellow chicken broth, green gelatin, red cranberry juice, brown tea) while we compared notes on the surgeon, etc.  Her nurse (Liz) was very nice, and while I was there the cardiologist came in to see her (when the surgeon mentioned that he would request that the hospitalist see her since Mom's physician doesn't come to SMH, I said to him I hoped it was someone with better people skills than the last hospitalist from her knee replacement, so the surgeon opted for cardiology to round on her instead.   Cardiology dude was very nice, was thorough and had some humor and personality under his white coated exterior.

I reclaimed Micah from my cousin's, he'd gotten a chance to play with Elise and Henry, and all the bopping around had taken its toll because he was asleep before I was over the Wilson Bridge.

Both the cardiologist and the surgeon said Mom could go home Tuesday or Wednesday, the surgeon thought she'd want to stay until Wednesday, but Mom got discharged on Tuesday, walked off the floor and down to the lobby to wait for me to pull the car up, and then when she saw the car, she came strolling out on her own, just about 24 hours after getting out of surgery.  Mom's neighbor was recruited to stay with Micah in the car, so we all had lunch together at Mom's.

She took it easy for the rest of the day, but the only pain medication she took was for her knee.

The next day, 48 hours after surgery, Mom wanted to go to the bank and check out the farmers' market at the St. Mary's County Library.  She was on the hunt for green beans.  Then we went down to another farm where we'd been a few months earlier to let Micah play on the wooden train.

While Mom was checking out the apples and pumpkins, we checked out the train and the goat pen and goat barn (or Goatel, as the farm calls it.)  Micah was trying to bond with the baby goats, but the baby goats were more focused on their meal plan, the udder.  And Micah sees a large pink, finger-like protuberance near the hindquarters and declares "IT'S A PE-E-E-NIS."  Which, of course, in his mind, it is.  Any dangling, wobbly bits between the rear legs MUST be one. 

So after trying to explain my mother's surgery to Micah - a necessity since he was right there while I emptied the drains and changed the dressings - and failing miserably to distill cancer and mastectomy into something manageable for the three-year old brain, I was now having to figure out how to explain that teats and udders are not penises and testicles.  Again, without benefit of caffeine for my aching synapses.

Anyway, I think he got the message because after the farm, we went to Applebee's for dinner and we were talking about what we saw on the farm and Micah looks at my mother quite earnestly and says in his loudest Micah voice, "And that NOT a PENIS, that where the MILK comes from."  Nice.

Meanwhile and far away, I spent the first three days off the electronic map before getting a little bit of time at Borders.  Free Wi-Fi, a beautiful thing,  free Wi-Fi and access to an electrical outlet, even more beautiful thing.

Whaddaday

Today we were on the move most of the day. Micah had an 11:00 am appointment with his ENT surgeon, and the office is up near Fort Lee (which somehow rings a bell from the movie "Desperately Seeking Susan"). Minimum drive time, barring traffic issues, is an hour.

Micah had a good time in the waiting room, and he was the only child there for most of the wait. It's less than a week before the surgery, so I'm not feeling like Ambassador for BAHAs and Atresia/Microtia, and it's exactly those days when people seem to want to get chatty. One lady who said she had a special education background wanted to know when we knew Micah had atresia, and I was tempted to say when we read the diagnosis on our adoption agency's web site, but she barely gave me time to answer before she was grilling me on who referred us to Early Intervention (um, no one, we knew about it and we contact them before Micah even came home) and then jumped right into what his hearing aids do and what can be done to 'fix' him. (Um, it's not a 'fix', he's not broken, dork, I had wonderful interior monologues while talking with her.)

Meanwhile Steve was getting questioned by a man with hearing aids who came in with his daughter; I tuned him out when I heard the "does he know sign language?" Aggggghhhhh. No, he SPEAKS FOR HIMSELF. It was a mercy when the medical assistant called Micah's name and we got to escape from the curious.

First we had to see the audiologist for a hearing test, then we got to meet with Dr. Choe - he's not seen Micah since May 2008, other than Micah's April CT scan. We were done with the appointments, paperwork and whatnot by noon. The interesting thing is that Micah's new auditory canal is going to be BEHIND the vestigal piece of ear cartilage that he has, and that's the norm.

Micah's scheduled to be first case on the 26th, so he and I will go up the night before and stay at a hotel near the hospital.

So now his surgeon goes on vacation, to Cape Cod, so cross fingers that Hurricane Bill leaves New England alone and he comes back relaxed and ready to make a gorgeous auditory canal.

So we came back down the NJ Turnpike to figure out what to do about the offer of a sectional couch from Thea's friend Lucas's mother. I have hated the coach in our living room since I first saw it in 1998, and once the ink was dry on the marriage license I have been plotting its demise. It has taken me more than ten years to achieve victory over ugliness. First went the ghastly pink recliner. Just an eyesore, and it cluttered up our already crowded living room. I don't even remember what happened to it, the memory has just evaporated.

Next went the unloveable loveseat. Another fuzzy memory. Gone, gone, gone. Another one bites the dust.

Then the matching chair went out to the garage.

Leaving the couch, which was probably made/sold in the era before disco died. Sitting in the living room like a big, ugly tumor waiting to be excised.

Until today.

With the help of a Home Depot flatbed truck and more sweat than I want to think about, we brought home two of the three sections and the ottoman.

And we managed it all (getting the old sofa out, renting a truck, picking up the sofas and getting them home), and got Thea picked up before daycare closed at 6 pm. And I got to go out to dinner tonight, at Santino's Bar One, leaving Steve to deal with Thea who had cried over the theoretical loss of the sofa on Sunday, and who utterly decompensated when she saw the only sofa she's ever known sitting at the curb. She managed to howl for thirty minutes, and only quieted down when she could rescue one of the throw pillows.

I came home from dinner at 9 pm and went upstairs, stopping in Thea's room to give her a good night kiss. I just about choked when she showed me the pillow on her bed.

So there is still a trace of ugliness to be erradicated. I am plotting how to get that pillow into the trash, and when it goes, victory will be mine.

Micah scores. . . .

I got an email from Micah's ENT surgeon tonight; he had a chance to review the CT already (five hours after it was done) and

Micah's Jahrsdoerfer score was 8/10 ! ! ! ! This is EXCELLENT news.

Micah lost one point for the appearance of his auricles and another for a possibly fibrous incudostapedial joint.

(This is the grading system used to evaluate whether or not the auditory canal atresia can be surgically repaired.)

Cited from http://emedicine.medscape.com/article/993857-treatment :

"Jahrsdoerfer proposed a grading system to predict which patients would potentially have the greatest benefit from surgical intervention for correction of an atretic external auditory canal. In this system, points were assigned for normal structures on the basis of CT scanning. Two points were given for the presence of a stapes, whereas 1 point was assigned for the presence of oval window, middle-ear space, facial nerve, malleus/incus complex, pneumatization of the mastoid, incudostapedial joint, round window, and normal external ear appearance. With a score higher than 8, Jahrsdoerfer achieved a postoperative hearing threshold of less than 20 decibels (dB) in 80% of patients. Furthermore, he concluded that patients with a score of less than 6 would most likely benefit more from nonsurgical management."

The CT that wasn't to be, was - or ride 'em, cowgirl

The on again, off again, on again, off again CT of Micah's temporal bones was on, again.

Midmorning today when I found my cell phone (it was under the console in my car), there were two messages from Hackensack Radiology Group's office manager. Since I have had absolutely no luck whatsoever in my dealings with HRG, it was Steve's turn to try. He's much more patient and has a longer fuse much of the time (ten years of practice in dealing with me, he should have these skills down pat).

And it was ok to bring Micah in this afternoon, so we threw lunch together, hurried both kids through eating, and got ready to go.

Thea got balky at the idea of riding in the car for no reason other than to provide support to her little brother, the queen of the pre-preadolescent meltdown strikes again. So Steve and Thea got the shopping list, Micah and I programmed the GPS and off to Hackensack we went.

My comfort zone on the NJ Turnpike ends at Newark Airport; this was only my third time driving on my own above Exit 15 (first time in 2007, to Hackensack to USCIS or whatever Immigration is calling itself at the moment to be re-fingerprinted before going to China for Micah; second time in 2008, to go to Micah's ENT's office in Englewood).

We got to the outpatient radiology facility at 3:20 pm, got through the paperwork quickly - it was a bit of a hoot having the woman registering Micah to ask how long has he had this problem? Umm, how about since about day 41 or 42 in utero? It's a congenital defect, he didn't get mutilated by his barber, sweetie.

Despite spending an hour in the car talking about how we were going to have pictures taken for Micah's ears and there would be no owwies involved, when it came down to laying down and getting positioned for the test, Micah was upset so we had tears and snivveling to deal with. Rather than keep pushing him we went back out to the inside waiting area to get calmed down and ready for a second try. I used the "I'll do it first, then you try it" approach.

The second try started with me laying down, Micah sitting on my stomach and the tech using her controls to make the bed go up/down and back and forth. Despite agreeing to try it after I did it, Micah still wasn't thrilled, but we at least got him laying down and they did whatever initial check to check for positioning. More tears, wanting to go home, wanting Daddy, as well as willingness to give up the puppy dog promised him if he cooperated by laying still and quiet (my pediatric nursing professor said that bribes can be an effective tool, so bite me if you think otherwise.)

And then I decided to bag the lead apron, get on the bed with him and hold his hand and hold his chin up, using our Very Hungry Caterpillar stuffed animal to soften the pushing on his chin. Kudos to whoever came up with this toy idea, the curve of the catepillar back fits nicely under the three-year old size chin. Of all the useless stuff animals Micah owns, this was one who proved its worth.

The tech was ok with this unique and somewhat awkward set up and told me to watch my head as we moved in and out, and we were off. Giddy up and get it over with.

And it worked, at least that's what the technician said. No motion artifact blurring the images.

Score one for our team, no sedation needed!

The CT technician had the patience of a saint, for which I am eternally grateful. I am also glad she made no mention of the awkwardness of having to look at my rather abundant backside as I rode the scanner bed sidelying and sidesaddle while holding Micah's chin. A true professional focussing on the task at hand rather than the incidental ugliness that might accompany said task.
And she was good about me asking her no few than half a dozen times, "Are you sure that the images are ok?"

Micah was doling out high-fives and hugs to all as he got ready to leave and spent quite a bit of time saying how "big and brave" he was. He was very pleased with himself, and any memories of the tears and cowardice evaporated. We stopped to get his puppy at Barnes & Noble - he had picked one up a few weekends ago and I had ditched it at the cash register telling him it was broken and needed to go to the doctor.

And then we drove home, in near rush hour traffic, on the Turnpike and Route 1. And got a ticket for having the GPS unit on the windshield. Obstructing the view of the roadway. No good deed goes unpunished, at least in New Jersey, it seems. Bite me, Middelsex County.

Really Stupid Rude People

And I thought that things had pretty much peaked as far as stupidity finding its way into my life, but today, I was proven wrong.

10:30 am, phone rings. The CallerID says Hackensack Radiology Group, so I assume the call is to confirm Micah's appointment Wednesday.

But no.

HRG is calling to say that Micah is too young to have his scan done at the outpatient facility, it needs to be done in the hospital.

Which I had asked the ENT before going ahead and scheduling.

Which the scheduler knew when I made the appointment and gave her Micah's date of birth.

To say that I'm pissed off is an understatement. I am so far beyond pissed off I cannot even see th lights of Pissed Off from where I am.

And so, yet again, I emailed the ENT and officially became one of 'those' patients (or 'those' patients' mothers.) Which sucks.

Stupid Rude People?

Or just fellow humans coming down from an Easter sugar high after biting the ears off of their chocolate bunnies? Bottom line, I don't care. I just wish people would be civil and reasonably helpful.

I got up this morning with the single-minded purpose of making Micah's CT scan appointment. I have a referral for the test, referrals for up to three follow-up appointments with the ENT who ordered the test and a prescription from the ENT for the CT, as well as the phone numbers for the facility where he wants the test done. Easy-peasy, lemon-squeezy. Or not.

Getting the appointment was a two step process because the first schedule I spoke with hung up on me when I went to pull the referral out of my briefcase. Second phone call, after going through everything in terms of Micah's information, the ordering physician, Steve's information (since the insurance comes through his employer), etc. we land an appointment for 10:40 am Wednesday. Fine. Time to program the GPS and figure out how long it's going to take to get there.

Until ten minutes later my cell phone rings (why not call the home phone first, idiot?) and it's the appointment scheduling equivalent of Rosie Perez on crystal meth with the phone manners of a pit bull whose chew toy was taken away. Who tells me that Hackensack Radiology Group has contacted ENT and Allergy Associates and the person spoken with (Simone, see previous post re: dealing with the ENT's office) said that Micah had not been seen in a year and the office was not authorizing the test.

Note to Self: always remember to take blood pressure medicine before engaging with doctors' offices' appointment schedulers, particularly those with fresh lobotomy scars.

This put me in "Don't Screw with Me, Wenches!" overdrive.

Before the gasket blew, I told Rose Perez on crystal meth that I had a signed prescription dated April 3, 2009 from the aforementioned physician for the test as well as an email from the physician stating that no appointment was needed prior to having the test done. Unmoved, she got snippy with me and miraculously my phone saved me by sponetaneously snapping shut and thus hanging up on her.

Then I sent an email to the ENT, who I pester way too often but usually for good reason.

In the time it took me to bang out four over-easy eggs and a pot of oatmeal, he got back to me. And according to the doctor, Simone was tasked with fixing it.

I still called the radiology facility to make sure the appointment was not cancelled. And surprisingly whoever answered that call was amazingly nice.

Evil Moments

Today we headed down the NJ Turnpike and on to my Mom's house. The kids were relatively good in the car, on minor spat with the obligatory whining, but otherwise a smooth trip. For variety we took a vote and decided to go through the Baltimore Harbor Tunnel instead of taking I-695 and the Key Bridge. Thea thought the tunnel was pretty cool stuff. Score one for Mommy.

Since the kids only had one break at the Chesapeake House rest stop, the first order of business was getting some running around time in before dinner. And my mother's neighbor's dog is the perfect source of some exercise. Thea loves walking Chelsea (or being walked by Chelsea) because of the retractable leash. We start out by going up and down the fire lane exit to my mother's development so that Chelsea's done her business before walking through the neighborhood.

We also give Micah a chance to 'walk' Chelsea by putting him in the umbrella stroller and clipping the leash into the seat belt. Then Thea holds the back of the stroller so Chelsea (who is a Boston Terrier) doesn't take Micah on a wild ride. Though sometimes I think she loosens her grip on the handles to see what might happen.

OK, so that's the preamble and set up for the actual story. The three of us are heading back into my mother's little townhouse community with a dog that has done her business so thoroughly that there couldn't be a drop left in her if her bladder were wrung out like a sponge.

We start off down the little court, Micah and the stroller have the leash, I'm trying to keep Chelsea from running like a lunatic into the street because Micah has no grasp of how the retractable leash works. Pun intended. We pass a townhouse where a little Yorkie is at the storm door looking out, Chelsea spots her and makes a dash across the lawn to see the little yapping scrap of bad shag carpeting.

Then Yorkie owner comes to her door and tells us to keep 'our' dog off her lawn. With the little yapping provocateur right there. As I had just come from four hours in a car trying to keep two kids happy, I was not in the best of moods, so I just snapped and said, "Oh, get over it." Thea looked at the lady and said, "Yeah." And we kept walking.

Considering my employment history includes two years working in the NJ prison system "oh, get over it" is fairly tame. Nevertheless I immediately felt guilty because I don't want to cause problems for my mother.

After we finished the walk we returned Chelsea to her owner, and I had to ask her who lives at 203. And it turns out that the person I snapped out at is the neighborhood busybody who everyone in this little community despises for numerous and varied reasons. The infamous CeCe. I have hear so many CeCe stories, and I do remember a lady with a Yorkie stuffed under her arm barging in when Mom's neighbor was being treated by the paramedics and readied for transport to the local hospital. (Just what one wants is in the middle of a medical emergency to have someone come nosing around, and with her ratty little mutt, too.)

So after a brief discussion with Dorothy as to whether my mother has any inkling about her surprise birthday party (another vote for 'no'), I hightailed it back to Mom's to tell her about our encounter.

Needless to say, my stock in my mother's eyes rose and she was wishing she'd come out on the walk with us. . . .

And I'm glad we're at the hotel tonight. Mom's guest room faces the street, and I'd rather not be sleeping there when the Molotov cocktail a la CeCe gets lobbed through the window.

And while I'm on the subject of sharing what a horrible person I am, here's another foot-in-mouth-via-email moment:

The set up for this story is that Micah's ENT said last May that we would proceed with a CT scan after he turned three. Our only contact with him since that visit was via email to ask him for a letter supporting Micah's second BAHA (which he responded to in something under a nanosecond and had the letter sent out within a day or so of the request. He rocks.)

So I called the office on Wednesday to set the wheels in motion for the CT scan. And was told that we need to make an appointment for an office visit first. Whatever for? Until Dr. Choe has the CT scan results, another appointment is a waste of his time and ours. But I made an appointment anyway, and then emailed the doctor (who I was told was on vacation this week, but I figured it would be in his email in-box when he got back next week).

This is what I wrote:

"Thank you for your help with Micah's second BAHA; he is doing amazingly well and is now at Summit Speech School for its full-day preschool program for just under one month. I called the Englewood office today to ask about setting up the CT scan for Micah. The staff member I spoke with said that we would need to make an appointment first. I had been hoping that we could begin to make arrangements for the CT scan, and then follow up with you after you had had the opportunity to review the results. I attempted to explain that other than being a year older, a bit taller, a few pounds heavier and much more verbal, his atresia is unchanged. (She had asked,"How is Micah feeling?" which struck me as a slightly odd question; he's three years old, and blissfully unaware that he's any different than anyone else, atresia is his version of normal.)"

It's not all that bad,really, except that the doctor in his response to me saying we did not need to come in for an appointment until after the CT scan, also CC:'d the message to his medical assistant and asked her to pull Micah's chart and put it on his desk, with all of my entire message forwarded with his response. Ouch. The front desk staff is going to hate me, at least one of them is.

And he responded within a few hours of my sending the message to him. So much for his vacation, time to back away from the computer. Dr. Choe. . . . .

Half & Half

Today was a day off from work, but with my faithful sidekick home from school the chances of acccomplishing more than doing laundry and clearing the debris field he makes were pretty slim. So I decided to just enjoy the day rather than mentally inventory all the things around the house that I should be doing.

First we took Thea to school and stayed there for about an hour. Thea's English teacher is expecting a baby in May and, thanks to knowing a quilt-making genius who took my idea for a quilt with all the students' names and expanded on it (and made it both better and easier) who made 70 or so squares of fabric that were somehow stuck onto freezer paper and had an shape traced onto them for the signatures, we are now in the process of getting all the students and all the teachers to sign a block. The mission this morning was to get the upper grades and the kindergarteners out of the way. The preschoolers and pre-Ks at the other campus did there part earlier in the week, so now we're left with getting teachers and the few part-time children finished off before next weekend. I was really surprised at how neatly most of the children wrote - and Thea had to add her own spin on hers, using her full name instead of just a first name or first name and Chinese name.

Then Micah and I went into Princeton to the jeweler's. A pair of earrings my parents gave me the year my father died has a pearl that had somehow lost its nacre, so I wanted to see how much to replace it. Unfortunately today was the jeweler's day off so I just had to leave them there. Now I feel like part of my ears are missing, those earrings are just always on (which is probably how the pearl got worn in the first place.)

At the jeweler's we had one of those "can I ask you a question?" moments, after another customer waiting had stared at Micah's head for a good five minutes or more. Not my day for feeling like the goodwill ambassador for microtia and atresia.

So the inquisitive lady got what is now becoming my standardized schtick, on fast forward. Bone conduction hearing aids. Not deaf. No ear canals. Surgery at a later date, if possible. On fast forward because Micah had emptied half of the store's candy dish into his hands and onto the floor, so it was time to beat a hasty retreat to Panera's for a snack. And since Micah selected a table near where a psychology graduate student was working, we got to go through the whole routine again.

By then our 48 minutes of parking meter time (right in front of the jewelry store and one of my best parallel parking attempts in ages, one move and in it went, I must brag) was up so we took off for Marquand Park for some playtime in the sand pit.

Once were were home from our excursions, I made lunch and got Micah down for a nap. And instead of just hanging out or joining him for the hap, I decided to take on the linen closet. This storage space hasn't been overhauled since some time prior to Thea's adoption - easily five years of steady neglect and accumulation.

Post-purge we still have towels, wash cloths and linens beyond our needs. And it will probably be another five years before I feel inspired enough to do that again. Next, either Micah's closet or the cabinets below the bathroom sinks.

So the day was half productive, half fun - and better than I'd hoped for.

BAHA-HA - double the hearing aids, double the fun

This morning when I was half-dressed and my hair was half-dried and we were trying to get on the road to the kids' schools, the call came. . . . the Speech and Audiology department phoned to say that Micah's second BAHA had arrived.

And with an appointment slot available at 3pm, my day went from:

- drop Thea at school at 9 am
- drive 40 miles or so to Summit School for group 10 am until noon
- drive 35 miles back towards home to be at OHES for the OT evaluaton at 1 pm

To all of the above, plus finding a route from OHES to Edison (another 30 miles, give or take) in a state that has no decent East-West roads and then driving 30 miles down Route 1 back home . All on a grey, cold, miserable, grungy, rainy day.

Despite this, I was high-fiving myself. Months of nagging, pushing papers along, more nagging, making phone calls and we're finally at the finish line. For 15 seconds in my own mind, I was a Rock Star. Then, back to my multiple neurosis already in progress.

And throughout all of this Micah survived on just a 30 minute nap, a snack while at school and lunch after the hearing aid fitting, and he managed to even have some fun at the OT evaluation. This kid is so adaptable, he just rolls with whatever comes his way.

He was so excited to go to his school today, he was singing about it in the car. It was so adorable - right up until he said, "Play with 'Laina?" Ouch. Not possible, sport. His best pal turned three in mid-December and has left group for preschool. Doesn't pay to fall for an older chick, sometimes.

At the hearing aid fitting, he was properly excited to have two BAHAs on - I don't know how much more sound it brings to him, and it may take some time to figure out one side is vibrating more so that means the sound is coming from that side, but in the sound booth he was able to hear the audiologist telling him to point to his nose at 15 decibels, which is great. The staff at JFK, particularly his audiologist, love him and he flirts with them shamelessly.

When we got home the mailbox held another bonus, the second set of blocks for the BAHAs had arrived from Forwerd, so I can rig up Micah's baseball hat again (for only one BAHA); I pinched the block from the hat to put on his elastic band. Unfortunately, I had put a message on the order asking for two thin blocks instead of the one thick, one thin in the starter pack which was ignored. But if that's the worst thing that happened today, it's not a disaster. I just hate it when a provider of a service fails to listen to me, especially when I'm paying good money for that service.

We were back in the car one last time because there was a message from The Optical Shoppe that my new glasses were in. Tomorrow the shop is only open until 5:30 pm and I'm working, so it was today or wait until Friday.

Now we're home, I'm trying to upload a picture of the double BAHA, but Blogger or Kodak is thwarting me, so dinner first, photo later.

After dinner addendum: Success, finally with the photo - though even with cropping and enhancing it is still tough to really see the two BAHAs. During dinner I just realized that this two-year old is sporting $8K worth of miniature electronics on his head. Yikes. That gives me a bit of pause considering the Crash Test Dummy wannabee lifestyle this boy lives.

Call Me Mrs. A. . .

Anyone who knows me, knows that when I married, I didn't change my name. This was driven by various factors: laziness and wanting to keep my father's last name being the top two reasons.

It's been a fabulous way to spot telephone solicitors, who call up asking for Mrs. A. and I sweetly tell them that there is no such person at this address. Buh-bye, click.

So Saturday when the mail brought a letter from the State of New Jersey addressed to Mr. and Mrs. A., my initial reaction would have been annoyance - a double dose because whoever had addressed it hadn't even bother to use Steve's first name, which is just shear sloppiness.

But it was the letter stating that Micah's second BAHA was approved, and we could go ahead and call JFK's audiology appointment to set up an appointment.

Two things:
A) for that kind of news, you could address me by any name you like; and

B) I know that the "call to set up your appointment" is patently untrue unless the audiology department has received its paperwork from the State, so it's not worth getting too excited about. And it trickles back to audiology via the hospital's business office instead of via the direct route. Last year when this same letter arrived, I promptly got on the phone to make an appointment and was rapidly shot down because there was nothing in Micah's chart yet. Call back later.

So this morning at 8:30, I was on the phone, talking with the audiologist, and lo and behold, the paperwork had also been received on that end, and things are moving forward with ordering the BAHA. A Christmas/Hanukah miracle, no less, since we might be able to go to Edison to pick it up on New Year's Eve.

And another miracle, my mother called to say that our Christmas cards, ordered Friday night from Kodak had arrived at her house- one full day before we're due to get there.

Now if all that pesky holiday shopping stuff would just take care of itself, I'd be in the clear.

New ENT for Micah - Dr. Choe

Wednesday we made an early morning trip up the NJ Turnpike to Englewood to ENT and Allergy Associates. While at Oma's last week, I called to make an appointment with Dr. Choe for Micah, figuring that it would be sometime later this summer. There was a cancellation and I was offered 8:45 on Wednesday morning.

Which meant the Turnpike, in rush hour. Rand McNally estimated travelling time at 1 hour, 20 minutes - but I don't think that factored in traveling at the peak of rush hour. So Micah and I left at about 7 am, and we got there with a few minutes to spare - enough time to fill in the four pages of patient registration paperwork before Thea and Steve arrived.

Dr. Choe was one of the nicest specialists I've met. No lab coat, no suit and tie, and he introduced himself with his first name. I think he spent almost an hour going over the options for us (rib graft followed by atresia surgery, atresia surgery followed by MedPor, or prosthetics.) He has cared for 70+ patients with microtia, according to what I read - and he's young enough that he won't be retiring any time soon.

So next year, around his third birthday, Micah will have a CT scan of his head done and after Dr. Choe evaluates the scan the first atresia surgery can be planned for the best of the two ears. Then six months or so later, the second surgery will be in the works. Then after that we can figure out who'll be doing the MedPor.

So if all goes well, Micah will have his ear canals and his ears by early elementary school, which is right when children start to notice differences and begin to tease.

Throughout all this, Micah was clueless and worked on dismantling the rolling stool in the exam room. We left that chair with two washers and one nut on the floor, but fortunately the chair still worked.

Micah's iPod

On Wednesday Micah and I dropped Thea off at school and made a quick stop to pick up drycleaning and get a cup of coffee (for me,he has plenty of energy w/o caffeine) before heading home for oursession with Ela, his teacher from Summit Speech School. We were in line at Dunkin Donuts with two people behind us, a lady behind me and a man behind her. The guy starts talking to the lady, commenting on it's a shame that children are using iPods that young.

It absolutely floored me that he was within four or five feet of me and felt it was appropriate to make comments, not to me, but to some random person in line - and all within my hearing, and before I got my coffee which would greatly enhance my ability to answer civilly. Instead of verbally eviscerating this twit, I screwed on my best smile and turned to him and said that the band on Micah's head was NOT an iPod, it was a hearing aid and if he looked just a little closer he could see that Micah's ears are not quite normal and thereis no ear canal. Then I turned back and placed my coffee order. I could have almost steamed my own latte.

What annoyed me is that if he would have spoken to me directly instead of just running off at the mouth, I would have been more than happy to explain. Why couldn't he just wait and talk behind my back and beyond the range of my hearing like a civilized person? Who in the world would think a parent would put an iPod-like device on a 20-month old anyway? What did he think Micah was listening to? Baby Mozart? Pink? Yanni? No apology offered by the motor mouth, BTW.

Still no photos of Micah with his BAHA, the one I took last weekend was a little blurred. Eventually. . .


Lydia

The trip to BAHA. . . .

We have arrived, at long last, in the land of BAHA, Micah's soft-band, bone-oscillating hearing aid. Two weeks short of four months home.

Last night, Micah had a horrible night: up several times at midnight, 3:00 am, and 5:45 am. I was up late getting stuff organized, a once every few weeks task, so I answered the 3:00 am wail, changed him and after not getting him on his way back to sleep, I just threw him in bed between me and Thea, figuring he'd either fall asleep or get smothered by one of us, and at that point, either was a viable option in my book. Only to be woken at 5:45 by the sensation of a twenty-plus pound someone crawling around on my side of the bed. Steve drew that one, and finally resorted to putting him in his crib and letting him voice his annoyance for a half hour. Our day was not off to a good start.

After taking Thea to school, Micah and I went to the post office and then raced home to be back in time for Ela, Micah's teacher from Summit School who comes to the house 10:00 am to 12 noon every Wednesday. He always seems to enjoy her activities, but started flaking out around 11:15 or so. Right after Ela left he had a bottle and took a two-hour nap.

JFK's Audiology Department confirmed our appointment yesterday, so I took that as a positive sign that the BAHA that the audiologist had ordered for Micah had arrived from Cochlear (which is located in Colorado). Micah had a good time in the waiting area, playing with his firetruck and rearranging furniture; he made friends with a gentleman who had a family member who adopted from China, so that helped kill some time explaining microtia/atresia to him and that Micah was a boy. (He was a nice man, but he also had the overly simplistic view of adoption from China: "they don't want girls there, right?" Fortunately Dr. Toth came out to get us before having to get too deep into that whole discussion.)

For the technically un-savvy (me), the BAHA seems surprisingly easy to use. There is an elastic band with Velcro, and on the band is a plastic square that the digital sound amplifier snaps onto. This has to be seated on any of Micah's skull bones; we tried out the mastoid bone (behind the ear) and his temple. When it was first put on and turned on, my boy was not happy and wailed for a few minutes - and it was definitely not the actual headband that was bothering him, it was the sounds he was hearing. After several minutes of displeasure, he settled down and didn't bother with the headband or the processor. Which is good, because it costs $3,000, so imagine what it's like strapping a tiny piece of equipment, about the size of your thumb from the knuckle to the tip, onto a toddler's head and saying, "Go forth, play."

It does have a tiny lanyard that goes through the unit with a clip that can be attached to the neck of Micah's shirt. Even though I'm not really worried about it in the house or in the car, we're using it for now because it may give us the three or four seconds needed to save it from going in the toilet or bathtub. On children older than age four or so, this device is snapped onto a pin that is implanted in the bone behind the ear area. Surgery to implant the pins isn't done on younger children because the bone isn't strong enough, hence the softband holding it onto the child's head.

I'll post pictures later, he looks a little like a hippie or a pirate. After getting home tonight, the most I could manage was getting cleaned up after dinner and getting Thea off to bed. I am happy that the biggest item on our Micah to-do list is checked off. We have to go back to JFK on the 19th for testing in the sound booth - for now we're rotating locations on his head to see where he seems to get the best reception. Testing in the sound booth will check on this.

My only (minor) worries now are that people will think that he's a girl because of the headband or that they will talk to him in that "I must speak slowly because he's mentally impaired" voice. This child is sharp as a tack. I need to get a couple of t-shirts made up for him: I AM NOT A GIRL, and if you don't believe me, feel free to change my diaper, and I HAVE A HEARING IMPAIRMENT, my IQ is probably higher than yours.

Halloween, etc.

This is Thea, International Super Spy with her friend Emily, Super Girl as they were about to start trick-or-treating. This year Thea stayed out much longer and even had to come home to empty her small treat bag. Micah went out in the stroller, but seemed enjoy being part of the fun. He wore his cousin Willi's pumpkin sweatshirt and pumpkin socks. We got a lot of kids - and got rid of about eight or nine bags of candy in the process. By nine o'clock, things had wound down and we closed up shop and pulled in all the decorations and candles. Thea pretty much ignored her candy; she's not quite at that age where every piece must be sorted - I could offer her a Kinder Schokolade bar for the whole bowl and she'd probably trade.


Micah, without even leaving the house, scored big on Halloween by receiving a nap quilt from Eleanor, who gave a similar one to Thea three years ago and who made the quilt for Thea's bed (and the pillow cases, and a doll's quilt and pillow from the same fabric, and a nap quilt, too.) It is perfect because Micah's teacher has been working on using animals to make sounds and his Baby Signs class taught the signs for horse, cow, pig, etc. So I can probably start passing on some of the pink or pastel baby blankets we've recycled from Thea so Micah won't be scarred for life. . . .

We're still in the seemingly endless wait for Micah's hearing aid. I did get a call from the audiologist at JFK - after we had gotten a message that it was now ok to set up an appointment. She said that she didn't know if the hearing aid would arrive in time - and she wanted to check on what type of band: pastel blue or navy with sailboats. WHO GIVES A FIG ABOUT WHAT COLOR BAND? If Micah had a vote, he'd probably pick something in the fuschia with rhinestones category, but since he doesn't I went with the navy.

Then I spoke with the audiologist at Summit Speech School, who seems to have much more experience with bone-conduction hearing aids than the audiologist at JFK. It seems that all soft bands have just one hearing aid, not two, but if Micah were eventually to have a bone-anchored hearing aid then it could be bilateral. Bone-anchoring is not on our agenda until the issue of whether or not surgery is possible to construct ear canal and ear drums is settled. And she said that Cochlear, the company in Colorado who makes this type of hearing aid could definitely get the hearing aid to JFK in time for our appointment on November 7th. And the next time we're up in Summit for Parent-Infant Group, she could take a look at it to check it out.

On Halloween, Micah and I went to Larchmont Imaging for his renal ultrasound. Because the ears and kidneys evolve at about the same time in utero, the ENT recommended getting this done. From watching the screen, I know that Micah has two kidneys, and they seem to have the basic anatomy that is supposed to be there. The technician also checked his bladder as well, which was full - so we had to hang around until he emptied it so it could be rechecked in its post-void state. Fortunately the bladder cooperated pretty quickly. One more thing checked off the list, now onto getting his bloodwork done and getting him to the ophthalmologist (another of the ENT's recommendations.)

Today Micah is 20 months old, four more months until the big 2.0.

Audiogram & 3rd Anniversary of Thea's Adoption

I'm adding another post keep those of you who have no cable TV, hobbies or social life, or those who have an extremely low threshold for entertainment, updated. Micah had his audiogram at JFK Rehabilitation Institute in Edison (what a miserable drive, everything I hate about roads in NJ and then some).

The test itself turned out pretty well, after being kept in a sound proof room that was about as warm as Hell's antechamber. He got so warm, I had him stripped down to a t-shirt and diaper by the time the appointment was over. As expected the decibel range covered by air conduction was nil (no ear canals, duh), but once they bypassed the structural abnormality, the bone conduction ranges were fine - so a bone-conduction hearing-aid for starters. I'm inclined to do the least invasive for now, the hearing aid, pending hearing from whatever surgeon is going to deal with the surgery later on - sometimes doing the pins for a BAHA (bone-anchored hearing aid) or cochlear implant will preclude future work on the reconstruction of the auricle. I don't much care for the cosmetic part, but Micah may care about this some day so I don't want to make any decisions that will override what he may want to do in the future.

The downside is we go back again in a week for a repeat audiogram, to make sure their assessment was correct and to see if they can distinguish between the left and right ear in terms of ability. I liked both of the audiologists who worked with him, one of whom has a doctorate. She was very much on the same page as me as far as getting Micah communication skills as opposed to solely focusing on his acquiring speech. The one school that Somerset County's EIP works with is more focused on oral/speech and once upon a time had a director who was opposed to sign language. This kid needs sign language as a temporary measure to express his basic needs: thirst, hunger, tiredness, etc. so anyone who is going to look down their noses at me will eventually be also butting heads. The second audiogram may also be able to put off further testing that would require Micah to go under anesthesia, so there is a plus to it.

Thea is doing ok at YingHua Day School, a Mandarin Chinese-immersion program. She taught one of my mom's neighbors "Head, Shoulders, Knees and Toes" in Chinese a few days ago, but then was mortified when I told her teacher about it. She sort of keeps her Chinese school stuff separate from us, which is so adolescent it's almost scary. Today is the third anniversary of her adoption, so we're celebrating Family Day with dinner and a dessert of her choice (blueberries and strawberries (with whip cream, we're not saints)).

Labor Day weekend I took my little mutants down to visit my mother over Labor Day, proving I could travel solo with two of them. I highly recommend The Who's CD, Who's Next for drowning out any whining or asking are we there yet, Mommy? Mom got Micah to eat yellow squash, pineapple and a few other things that he was spitting out at home. Mom bought Micah a little pinafore/bib thing at the farmers' market. I put it on him and it looks more like a sundress than a bib/coverall, but if one is going to cross-dress, let it be John Deere fabric and Mennonite-made. Fortunately he wasn't into accessorizing with his sister's shoes (loves the sandals with the pink flowers) or one of the purses that she has no use for.

I'm now trying to get invitations out for Thea's birthday party. She turns four on Saturday, October 13th, and this year we're finally doing a children's party instead of just the family parties of the previous two years. She actually walked into My Gym and said, "This is a cool place for a birthday party." Coming from the child who hates to be the center of attention in a lot of ways, I had my checkbook out in about two seconds flat. I've been scouring the dollar section of Target since Spring so I already have most of the stuff for the party favors, if I can find all the places I've squirreled it away.

"You have a messy house."

This comment I got from a little playground friend of Thea's who had stopped by to see if she could come out and ride bicycles. I hope tact comes in to his life soon, because if he lets fly with another comment like that around me, he won't live to see his next birthday much less get invited to Thea's birthday party. The house was in total disarray last week from Thursday through Saturday because the living room was rearranged to put up the play yard for Micah. But it was neat piles of stuff, not wading through debris or even anything close.

A victim of reordering our world to incorporate Micah was the chair that matches the sofa. There will be no memorial service for this hideous doesn't-know-if-it's-a-chair-or-loveseat, and the couch should be nervous because it's made out of the same butt-ugly fabric. Once the play yard was up and the living room put back in a little bit of order, the parts of the crib were pulled out from under furniture throughout the house, and while Steve, Micah and Thea were out in the pool, I put the crib back together. Only eight screws, but a pain in my neck. Thank goodness for an old Nordstrom's hatbox that I used to prop the bottom/spring thing to be able to keep it within reach of the screw holes instead of growing an extra set of hands.

Anyway, the bottom line is Micah has a room, even though he's still camping in the Pack-N-Play in our room. I've been rocking him to sleep in there, and once a few more things are exiled to the attic or wherever else we can stash them, and the baby monitor gets plugged in, he'll move.

Micah had his first visit with the local ENT last Wednesday. The guy had the personality of a paper clip, but his office staff was nice. And I met another family with a child with bilateral microtia/atresia. The little girl is now six years old and is entering mainstream first grade. Thanks to surgery, she went from moderate/severe hearing impairment to mild impairment. She also had the plastic surgery to create auricles, and even though I'm not as concerned with the cosmetic aspect as restoring as much of Micah's hearing as possible, the appearance of those ears was amazing. On September 6th, Micah is scheduled for an audiogram to test his hearing.