Sunday, January 27, 2008

'That's why it's a syndrome'

When we learned Hope had a syndrome, my reaction was typically naive: "As long as she's healthy, I'm OK." Mo was quick to call me out as a dunderhead. "Kids with syndromes aren't healthy. That's why it's a syndrome."

Unfortunately, she's right. There's a gazillion biological explanations to back her up, but kids with syndromes usually have health issues -- or else they wouldn't have syndromes. That's not to say they won't get stable or live healthy lives. They do. But it's sometimes a lot of work and a lot of hassles to get there.

That lesson was reinforced today with Mo's visit to Hope's ear-nose-and-throat specialist. We were hoping he'd green-light surgery for tubes in her ears to help her hear. Her defect is caused primarily by tiny canals, which in part are caused because she herself is so small. The issue is beginning to acquire real urgency. Hope is 3 months old on Wednesday. These are critical months for her development. If she can't hear, she learns slower, talks later and bonds less with us.

Of course, there's a delay. The ENT dude, who is regarded as one of the best in Michigan, first wants to evaluate Hope's sleeping because we suspect apnea. Sometimes, she briefly stops breathing while snoozing, catches herself, then breathes again. It's fairly common among tots. But Hope's could be caused by her floppy larynx, or laryngomalacia. Essentially, the elasticity of the windpipe may cause it to close when she inhales. If it's a severe enough case, it might require minor surgery to nip and tuck her larynx into shape. And since no one likes putting 5-pounders under anesthesia more than necessary, the thinking is he'd do both at once. But first, we need to take Hope into the hospital for an overnight stay to evaluate the extent of her apnea.

Simple? It gets complicated.

The ENT took a peek at Hope's throat and found it is inflamed. That's because food is coming back up her throat because she has a slight hernia. When it does, the acids in the food irritate her throat. That makes it uncomfortable to eat. So she eats less. That slows weight gain for a child with a syndrome where it's always difficult, keeping her -- and her ear canals --tiny. So there's a convoluted line from spitting up to hearing.

Phew. I'm exhausted even typing that sentence.

The next step is a sleep study to determine the extent of the apnea. In a few weeks, we'll spend another night at Beaumont Hospital for more wires and blinking lights. Then presumably she could have surgery in March for the tubes and whatever else.

On a happier note, Big Mo has joined the blogging brigade, joining the Michigan Moms blog on our newspaper's Web site. Check it out. Poor Hopey. It's a good thing this Internet fad will never last. Otherwise, she'd really have it in for us one day.


Karen said...

That IS rather complicated, isn't it.
I have a question: for Hope's ear tube surgery, is the ENT planning to widen her ear canals, or place ventilation tubes in her eardrums?

Anonymous said...

Couldn't anything ever be simple??? Well, the end result will be worth waiting for. Sorry it couldn't happen sooner.

Miss you lots!

Grandma K.

Anonymous said...

you're not a dunderhead Joel. maybe a bumblebrain...but no dunder in there. Give Hope a kiss from us. I bet you & Moe had fun with Beef over the weekend. He appreciated the shoveling help. Is March the soonest they can do the surgery? does Hope have to be a certain size for ENT doc?

Take Care,
Mike, Jamie, Connor & Garrett

Jan said...

You guys are such an inspiration -- I love your attitudes. Hope is precious; savor the moments.

misty @ said...

I love reading your posts about your prescious little one. you write about your experiences with an eloquency that i envy (i'm not even sure that eloquency is a word). My son Mason was born on Nov. 2nd, and has been unofficially diagnosed with cdls. I have enjoyed your posts for a couple of weeks now. know that you're not alone at all in what you're experiencing. It is tough, but the love that we feel for our little miracles is amazing. witnessing hope's journies have been very comforting to me...i wish your family the best..and know that someone in co thinks about little hope often...and knows how it is.....