Langer Loksh

Nomination for the All-Name Team

Boof Bonser.

Ear Ye, Ear Ye

This morning I played hooky and went to an educational conference on microtia and atresia at Mass Eye and Ear in Boston. The conference is put on by the Let Them Hear Foundation and organized by this super chick called Sheri Byrne who fights insurance companies to get coverage for surgeries for kids. 

First up: the dreadful Barbara Hermann, who inflicted herself on us when Charlie was born. Shudder. Actually she seemed perfectly nice during her talk on how human the ear works. Maybe she was just having a particularly satanic day in early May, 2005.

Next, the genuinely charming Dr. Eavey, who we saw when Charlie was a few months old. At that time, he refused to show us pictures of his work, which I found suspicious. I did see some examples in his slide presentation today. After showing each patient, Dr. Eavey said "Is it a perfect ear? No."

Not good enough.

Dr. Eavey does soft tissue repair, focusing on minimally invasive one-shot-deal type surgeries. The result is not an ear that matches the other ear, but an ear that doesn't look quite as unusual as it did before. Also he has spent decades researching how to grow an human ear on the back of a mouse or inside the ear of a rabbit. He's grown ears with human cartilage in petri dishes and in gold molds. None of them are remotely usable, which he cops to. He's also studying the genetics of microtia, and he gave a really nice clear explanation of how complicated that is--how there are multiple genes involved and that microtia happens when these multiple genes interact in certain ways, and that environmental factors may also come in to play.

A Dr. Ted Mason from Springfield, Mass. followed Dr. Eavey. Dr. Mason discussed bone anchored hearing aids, or BAHAs. A BAHA is the only type of hearing aid that can help Charlie. That's because his outer and middle ear are not formed correctly so putting louder sounds into his ear canal won't do anything. Vibrating his skull to directly stimulate his hearing herve, however, could give him nearly normal hearing in his microtic ear. Charlie would have a titanium bolt implanted in his skull; he'd snap a processor onto the outside and take it off at bed time or for swimming and bathing. Sheri Byrne explained that the FDA has classified BAHAs not as hearing aids, which insurance companies do not cover, but as "auditory prosthetics." They do not amplify sound, they just reroute it. We  have a one-on-one appointment with Dr. Mason tomorrow afternoon.

Finally I saw Dr. Reinisch's presentation on the Medpor plastic implant ear. This is the doctor who called me from his ski vacation during the angry-red-bulge crisis. Even in the last six months, Dr. Reinisch has improved his skin grafting technique so that now he doesn't even shave the side of the kids' heads. This is the best of the surgical options, though I can't say I'm too excited about surgery at all.

At lunch time I sat myself down in the Mass Eye and Ear cafeteria with three other families of boys two and under who have hemifacial microsomia and microtia. One family came from Philadelphia, another from Kansas City, and another from... I can't remember. All the parents were so nice and the kids were so cute. We seemed to have similar attitudes towards surgical options. Most people are planning to use Dr. Reinisch. I feel like if Charlie were born ten years from now, everyone would be doing Medpor and there wouldn't be this question.

I had to go back home to pick up Charlie and meet Summer's bus, so I missed the afternoon sessions, but it's OK because I have already seen the amazing Dr. Brent's talk, and Charlie's not a candidate for the atresia repair so that talk wouldn't have done me any good, and I have an appointment with the prosthetics guy tomorrow. The only other presenter was Dr. Kaban, the jaw distraction guy, but he's at Mass General so I can make an appointment with him any time.

Lots to think about and talk about with Jeff and more to report tomorrow after our individual doctor meetings. Overall, I feel much calmer than I did when we took six-month-old Charlie to the conference in New York. I'm comfortable with all this stuff now, which is good news for Charlie because he's going to take all his cues on this from us.

Ireland Blow-by-Blow: Day 10

Saturday. Yucky weather. Alissa, Lauren and I drove around the lake to Cor na Mona, to the Connemara Sock factory and the salmon smokery. Both were closed. We drove back to Maam Cross and stopped in at a sheep auction.

Maam Cross is an intersection with a large hotel and a gas station and maybe one or two cottages that do not look terribly occupied. All of our brochures and pamphlets tout Maam Cross as "the Piccadilly of Connemara" because it is so hopping. I found this perplexing since there is absolutely nothing happening in Maam Cross, except for tour buses parked at the hotel. The more I thought about it during the week, the more it irritated me. Clifden, for example, is a huge town with tons of traffic. Why isn't Clifden "the Piccadilly of Connemara"?

The sheep auction, that's why. I guess. On Saturdays, at least on this Saturday, a couple of vegetable dealers and chip wagons (trucks that sell burgers and fries) lined up on the road. Behind Peacocke's Hotel there's a sort of open barn where sheep farmers buy and sell little herds of sheep. We met some very smelly old men who probably hadn't seen another human being since the last sheep auction as well as some attractive young men, also smelly, who teased us American girls, telling us the sheep would smile for the camera if we asked and suggested we buy a flock, "throw them in the boot" of our car, and "turn them loose in the city." It was a nice little slice of life in Connemara so even though we didn't get to the sock outlet or salmon smokery we had to call the morning a win.

Still, really, those people who write up the brochures are on crack. A few dozen farmers does not a Piccadilly make.

We met up with the rest of our crowd at Glengowla Mines. In the 1850s and '60s, locals blasted the rock with hand tools and dynamite to get the lead out for a stingy landlord. The man who now owns the land reopened the mine as a tourist attraction in 1999. We visited in '03; since then they've added a nice gift shop and a little picnic area where kids can "pan for gold." Summer was a little nervous about going down the mine shaft so I bought her, Charlie, and Alison little flashlights. Summer loved shining her light on the shiny calcite in the mine. We all had to wear hard hats too. Fun for the whole fam. The owner knows Padraig because there's an old copper mine at Curraduff; Mary chatted with him at length about local families.

Next we took the ferry from Oughterard to Inchagoill. This is the island in Lough Corrib with the oldest church ruin in Ireland and the grave of St. Patrick's nephew. We had been out there before, but Mary and Alissa hadn't, and we all enjoyed it. There were some dudes from Meath, one of whom attempted to pick up Alissa. Shot down! We saw them again that night in Breathnach's Pub, where we met Kevin and Betty for some Guinness, traditional music, and more stories and laughing. I pointed out my "lady Guinness" (my terminology) to Kevin--Guinness in a little glass, not a big pint glass. "A lady never drinks a pint," Kevin agreed, adding, "Eight or nine glasses, but never a pint."

Rhetorical Question

Who's her Papi?

Dice-Kream

You're just about to keel over dead from the anticipation, I can tell. I'm working on the next Ireland Blow-by-Blow post, but I don't have photos for it. I have to get them from my work computer because Alissa has them, and I'm so disorganized that I've lost the Desitin and the cable bill is two months late and after like six weeks of being uber-bitch to Jeff about him not taking the time to measure the barn roof so I could properly compare the estimates from the roofing companies, it's now been three days since he gave me the measurements and I have done exactly nothing about it.

I have a wretched, wretched head cold.

Today Charlie fell on the fire truck at the playground and gashed his head for real, like, blood matting his blond hair. Gross! And sad! But he is OK.

And just now Rebecca the Kitten tried to jump on me and shredded my bare legs (hello it's EIGHT THOUSAND DEGREES HERE) and I'm bleeding all over my chair. I have my old anti-Bonita spray bottle at hand. I traded one cranky old(ish) cat for two psychotic young ones and I'm not sure which is worse.

I don't mean to sound cranky at all. Things are actually going well here, if you ignore the waist-high piles of laundry and dishes. Summer is doing well in kindergarten, making new friends and completing sea-themed worksheets. Though she doesn't eat anything remotely normal for lunch. Today she ate shredded cheese and canned black olives. And Charlie, except for the bleeding head wound and the hacking cough, is fine too. He's using a lot more consonants (example from tonight's bedtime books: "Bye bye, Dumpy" with all consonants) and putting more words together (example: Can't think of a good one, but trust me). 

An exhausting grocery store trip with Charlie this morning enabled Summer and me to enjoy some Brigham's Dice-Kream after the varmint himself went to sleep. This reminded me of my friend (and new dad!) Nice Guy Tom who does the best impression of Mr. Burns saying "Smithers, I like this 'iced cream.'" So I Googled "Mr. Burns iced cream" and got the Wikipedia entry on Mr. Burns and even though I'm getting a little tired of Wikipedia, it's so fabulous I have to link to it.   

Circle of Smiles: I'm Smiling Because Antonia Rose is Here

Don't Try This at Home

Parents magazine had a reader tip: use your apple slicing gizmo to create a fun, flower-shaped PB&J for your kid's school lunch!

Squelch...

The Kid You're Supposed to Get

My friend Sarah and I used to talk about the kid you are supposed to get. Like, "Don't feel bad you did not get pregnant this month. The kid you are supposed to get was not in this month's egg."

I had a thought the other day while driving to the ole therapist. I was trying to pinpoint exactly what bothers me about why it is upsetting when your kid comes out and the kid is not "perfect." (Let's not get into my passive-aggressive "perfect" post from March.) I think the problem is that I think people are trying to say that you wish you had a different kid altogether, one that is "perfect." 

No!

You like this kid, this one. This is the kid you were supposed to get, and you are happy. This kid is the best thing since direct deposit. Seriously! The reason you are upset is that you don't want the kid to have a hard time. You know the kid will have some hard times, and you feel bad in advance. But it's nothing to do with wishing for a different outcome for that pregnancy.

Perhaps this makes no sense to you, or perhaps this is as obvious as the whitehead that has sprouted on my right nostril today, but my brain works at the speed of molasses sometimes (and other times at the speed of Applesauce), and I thought I'd better write it down before I forget, like how I have to keep asking my husband and my brother to explain the infield fly rule again and again.

Ireland Blow-by-Blow: Day 9

Kind of losing steam here on the Ireland Blow-by-Blow. Impressive that I've made it this far. Especially with almost no comments. It's almost like you don't really care about every single second of my summer vacation! Shocking.

Anyhoo, on day nine of our trip, as we were cramming in some breakfast and zipping up our backpacks for a day trip to the Aran Islands, Mary and Alissa arrived fresh off the plane from Boston. In typical fashion Alissa turned on a dime, hopped in our Hertz, and with no sleep at all, accompanied us to Inishmaan.

Inishmaan (pronounced inish-mahn) is the medium-sized Aran Island and the least visited of the three. In 2003 we visited Inishmore, the big one, and saw the super spectacular cliffside fort, Dun Aengus. We had to hire a tour van for that. Inishmaan is small enough to tackle on foot. We climbed up to a smaller fort, Dun Conchuir, where we found cows and knee-deep cow poop. These bovines have no respect.

Inishmaan has a population of 200. At the pub, there was no food besides grilled ham and cheese sandwiches, so that's what we ate with our Guinness. It was quiet and we liked it.

Ireland Blow-by-Blow: Day 8

As usual we started the day with Padraig. Jeff chatted with Tommy Sullivan, whom we remembered from our 2003 trip because we accidentally ended up in his back yard after hiking down from Seefin and there he was chopping wood and we said "Hello!" and he said "You're yanks, aren't you? I'm a yank meself!" Because he was born in New York and came back when he was three. Tommy's cottage is uphill from Catherine's, where Padraig was living then, and when we got back Padraig said "You've met the man above," and I thought he meant God but he was talking about Tommy Sullivan. "The man above." Love it.

We spent the day in Galway City. We tested two playgrounds and one pizza place (where a small can of soda cost three Euros). We walked along a section of the medieval city wall and along the river walk, which was filthy. We popped into the cathedral, where Summer lit a candle and prayed for the souls of Button and Uncle Bobby. Here are the kids at the Spanish Arch.

Kathleen offered to take all the kids back to the cottage so we could have a date night in Galway. "It's not necessary, really," I said. She insisted, and as soon as they drove away, it was like this giant V8-style head-slapping moment. What had I been thinking? Just to walk down the street holding hands with Jeff and not have to think about where the kids were and whether anyone was going to snatch them or whether they were going to knock over a postcard rack or run into traffic or whatever--it was like a vacation within a vacation.