Updates galore

In newspapers, you get blamed sometimes for failing to follow through.

Big splash on the front page: "THIS GUY IS A DIRTBAG!" Then, nine months later, the case winds its way through the machinations, memories fade, the news trudges forward, more scandalous dirtbags emerge, follow-ups get fewer and farther between until -- woopsie daisy -- a blurb is printed on page 43B reading: "Allegations of alleged dirtbaggery allegedly could be unfounded, prosecutors allege."

Critics call it a conspiracy by dirtbag newspapers to rake muck. I say it's human nature: Crises and scandal always get more attention than process, minutia and murky outcomes. When the answers aren't always clear-cut or better than you initially feared, it's even easier to forget the initial problem.

This blog is no exception. In that vein, here's some answers to issues that no longer loom as large as they did a few months ago and some that do.

The spitting of blood: Once a weekly nuisance, it's faded considerably in the past few months but hasn't disappeared. For about two months this summer, Hope would wake up crying. We'd rush into her nursery and see her laying next to a pool of dried blood. We did two endoscopies to pinpoint the problem.

Old pal Dr. Spitenup concluded it stems from her hernia and stomach rubbing against her esophagus. His solution: Well, it stinks, but it doesn't bother her, so live with it. We investigated on our own and believe it was exacerbated by supplemental oxygen fed through her nose as she slept. We have a good friend with cystic fibrosis who uses oxygen. She reasoned that the oxygen dries out her nasal passages, leading to blood that Hope swallows, and then eventually spits up.

We stopped using the oxygen at night. Viola. No more blood twice a week. But the issue persists. A few weeks ago, Hope awoke coated in a mammoth pool of blood so old it was black. We think it was from the rubbing of the hernia.

The eyesight: Six months ago, Hope's eyesight was tested as a matter of routine. The opthamalogist, a kindly, geriatric fellow who inhabits a wood-paneled office that looks like a hunting lodge and I'll call Dr. Speakupsonny, found that Hope was extremely near-sighted and would need glasses when she turned 1. We were crushed. We always thought that, given her hearing issues, it was highly unfair she'd have to wear hearing aids and glasses.

We had a follow-up appointment on Election Day. Dr. Speakupsonny found that her vision has improved, but she'll probably still eventually need glasses. We return to the hunting lodge in six months.

The laryngomalacia: Hope wheezes when she breathes because her larynx is floppy. It's a fairly common, and mostly benign, condition that most kids outgrow by about eight months. She hasn't. That's probably because she is so small. At the rate she's growing, it could be an issue for another 2-3 years. This remains a cause of concern because she could have a very difficult time breathing if she catches a bad cold. Once again, this year, she is having the monthly Synagis shot, the uber-expensive shot to ward off RSV (a respiratory virus) that is recommended for preemies. Dr. Frosty also worries that she's expending so many calories breathing that Hope has a harder time gaining weight. There is a surgery to correct the issue. We are exploring it.

The teeth: Six months ago, I foolishly wrote a blog item proclaiming that Hope was teething. She still could be. But there is little evidence of it. Children with CdLS take forever to cut a tooth. The tooth fairy got tired of waiting by the door, checking her watch and tapping her feet, and was last seen speeding away in a used K Car, listening to, of all things, "'99 Luft Balloons."

The heart: Learning my lesson from the teeth, I am declining substantial comment. For about two months, soon after her birth, this was our biggest concern about Hope. Six months ago, we were told the situation looks good. We have another follow-up appointment soon. I ain't saying another word.

The Dice-K: For weeks, Hope's favorite friend in God's green Earth was a teddy bear of Red Sox pitcher Daisuke Matsuzaka, also known in this age of lackluster nicknames as Dice-K. Lulu ate the doll. My sister faithfully mailed a duplicate. Alas, love is fleeting at a tender age and Hope's affections have wandered. Her new love: Big plastic cow on wheels.

The cutie: I am doing fine, thank you very much. And Hope is getting cuter by the day.

Decision day

Today is D-Day with Dr. Spitenup, when we throw ourselves at his quirky mercy and see if Hope needs surgery to perform a fundoplication and install a feeding tube.

We pushed up an appointment set for late October when Hope added a new trick to her repertoire: Projectile vomiting. It's eased, but there was a week or so when she'd make like "The Exorcist" twice daily.

Eleven months into being parents of a special need child, we've had to re-learn worry. It's a tricky balancing act. We can't rush to the hospital every time she thew up old blood. But we shouldn't get used to it, either.

A fundoplication, which wraps part of the stomach around the esophagus, could help with her reflux. A feeding tube would allow us to continually pump calories when she sleeps to fatten her up.

When Spitenup broached the fundoplication and feeding tube a month ago, we were nervous and scared.
We've since slowly warmed to the idea and, after a summer of Hope spitting up blood and negligible weight gain, we've concluded it may even be overdue.

Ideally, we'd like to coordinate surgeries with our ear-nose-and throat dude, Dr. Frosty. He wants to trim part of her windpipe -- the larynx -- to fix her heavy breathing. He thinks part of her problem with weight gain is because she burns too many calories breathing.

But we shall see. Spitenup has a way of confounding us.

Bummer

Our biggest fear today was that Hope wouldn't do well with anesthesia during surgery for her ear tubes. By that measure, things went exceedingly well. The girl is tough. She was groggy for much of the afternoon, but seems to be rebounding well.

Unfortunately, today fell short by other measures. The tubes are in. Dr. Frosty emerged after 95 minutes looking like he straggled in from Fallujah and announcing that Hope's ear tubes were his toughest operation yet and her canals are the smallest he's seen.

Ten hours later, he returned to tell us they didn't make much difference in her hearing. One ear, which had severe hearing loss, has slightly improved and is now considered moderate. The other, which was moderate, had no change. That designation sounds better than it is. She still can't regularly hear our voice.

The tests still showed that the inner-workings of Hope's ears are mechanically sound, so she has conductive hearing deficiency: Sound isn't getting into her inner-ear. There's a chance her ear canals could widen as she ages. It's apparently not uncommon for kids with CdLS to flunk hearing tests as newborns and have normal hearing by 2.

So now it's on to getting Hope fit for hearing aids. We hope it isn't as burdensome a process as the tubes. She's a few weeks shy of 6 months and action is paramount.

We're sad, groggy and a bit numb from a long day, but I'm not sure we're surprised. Both Mo and I had sneaking suspicions this may be the result. Still, we allowed the possibility of a quick fix to tantalize and daydreamed about how wonderful it would be if we could take her home to song and mindless chatter that she could hear.

But we know that things are rarely going to be that easy. It stinks. But we're not big wallowers. So we move on and know it could have been worse.

Hope should be home tomorrow. They kept her overnight for observation because Dr. Frosty also stuck some probes down her throat to definitively diagnose her laryngomalacia (floppy airway) and there was some concern about swelling and breathing.

Addendum: Hope did return home on Saturday. She's OK, but cranky. So are we a bit. She may get fitted for temporary hearing aids on Friday, but there's a mountain of paperwork between now and then.

Simple procedure

Neither Mo nor I want to verbalize it, for fear of hexes, but this could be a huge week for Hope. We got the long-awaited call late last week: The surgery for ear tubes is Friday, followed by a BAER test to determine if they did the trick.

If they do, my oh my, she can hear.

Supposedly, it's a routine, short outpatient operation. She goes in early Friday, is sedated so her head remains perfectly still, undergoes a 15-30 minute procedure to implant the tubes, has the hearing test and should go home that afternoon.

Our pediatric ear-nose-and-throat specialist, Dr. Frosty, has a good track record. This is his bread-and-butter. He's only failed to implant one patient and he got them in on the second try a few months later. But No. 2 is inevitable at some point, and he cautions that Hope's ear canals are tiny.


Like a lot with Hope, we don't want to get ahead of ourselves. We need to temper our nerves, excitement and wide-eyed eagerness with sober realism. There's a chance it won't work, so we'll have to proceed to hearing aids, wait until Hope gets bigger and try again. There's a chance it will work, the tubes might not make a difference and she'll need the aids anyway.


Either way, the odds of improving Hope's hearing are good. She has conductive hearing loss, which means the inner workings of the ear are fine but there's a blockage that prevents sound from reaching them. The tiny canals may be the culprit, but so could wax buildup, fluid or a missing bone.

We're convinced that Hope's hearing has slowly improved since the first BAER test, which revealed she could detect sounds at high pitches or extreme volumes. She startles sometimes. Every once in a while, we'll call her name and she'll turn to us. Then again, one of our smoke detectors is perilously close to our oven. It squawks nearly nightly. Hope doesn't seem to mind.

So we've proceeded as though hearing is an inevitability. We read to her. We sing her songs. We babble about our day and carry on conversations that she likely can't hear. But she sees us moving our lips and pays rapt attention. Hopefully, when those wagging lips begin to produce sounds she can comprehend, she'll put it together and life will be good.

But you never know. Dr. Frosty assures us that kids are resilient and "do fine" after successful surgeries. Still, we wonder about the adjustment. All of a sudden, if things work the way we want, Hope's world will expand exponentially. In addition to sights, smells, touch and taste, she'll have this whole sensation to figure out. Will it be melodious or cacophony? Will it expand her burgeoning sense of wonder or simply overwhelm? Will "Running Away from Mom" sound nearly as cool if she can hear my singing?


Nor are tubes a cure-all. Sometimes, I've deluded myself into believing that our path will suddenly become easier once tubes are implanted. The skies will open. God will rain M&Ms from the sky and remove the brown ones. And I will suddenly have a full head of hair. Big Mo brings me back to Earth, pointing out that hearing is just one part of the puzzle toward communication, which is always a challenge with Cornelia de Lange kids.


Still, we're excited. The benefits are hundreds of times better than any niggling concerns and it's such a relief to finally be doing something after what seemed like months of limbo. So we do what's beginning to come naturally: Take whatever comes as a gift and roll with it.