Friday, April 4, 2008

Great girl, bad blogger

Pardon our dereliction from blogging, but the old saw is true: No news is good.

Medically, there's delightfully little to report. Hopesy's cold seems to have run its course. A follow-up visit Thursday with the venerable Dr. Spitenup went so well that we don't have to see him again for a few months. His manner is strange, but we've become grudging fans of the speckled-haired specialist. That's mostly because what he's said so far is true: If Hope is pooping, she's happy. If she's not, ay caramba. Sometimes, life is just that simple.

Socially, Hope is going gangbusters. We marked her fifth month a few days ago with wonder. In some ways, it seems like the months have flown. In others, they've crawled. But there's no denying Hope's progress. She's doing incredible things for a 6 1/2 pound girl, becoming more expressive daily, laughing like the dickens, grabbing everything in sight, removing her beloved binkie from her mouth and plopping it back in, holding up her neck and going to town with tummy-time. She's still mostly where she should be on the growth curve, which is a testament to her and her Mom. She who works with Hope with all the determination and grit of a Hungarian gymnastics coach cajoling a 9-year-old over the pummel horse. Hope's occupational therapist was wowed at her progress Wednesday after a two-week gap.

Bureaucratically, life is slow. We're finally meeting with her ear-nose-throat specialist on Monday in hopes of kick-starting surgery to fit Pippi with hearing tubes. She's at the point now where conductive hearing loss is becoming critical. Six months is about the cut-off point for intervention before it affects development.

The paperwork chain to enroll in the genetic study of parents with multiple children with CdLS is glacial. The point man to coordinate communication between three hospitals is our old friend the geneticist. He's just now submitting reports about her diagnosis that were due three months ago. We've known the doctor for three years. He's kind, warm and a tremendous help. He's also methodical to the point of paralysis. Every day, I suspect he goes to the hospital cafeteria and expounds on the comparative merits of macaroni and cheese vs. tuna sandwiches before handing the cook a six-page memo explaining why he would like a side of cole slaw.

So we wait. And that's OK. Many days, like this morning, it's such a joy to see Hope squirming and giggling that you feel like skipping in air. It's corny. But true. I guess that's parenthood.


beth said...

Hooray, the blog is back! No news is good news indeed. Cute picture of the Hopester.

Anonymous said...

we missed the blog and news of Hope and Joel's explaining in ways I think only he could ...missed it

Karen said...

I am glad to hear that Hope is doing so well! You are right - sometimes no news is good news.

Misty said...

as usual love the pics!! Oh how our lives are so similar with appointments and DOCs taking their sweet time.... LOL. we have a quirky dr. similar to dr spitenup. i shall call him dr..... palatefixer...he is one cooky guy, but lovable!!

Hope looks wonderful and happy. It is always so nice to read about your news, or lack there of :) news or no news, you bring a smile to our faces. I hope that life continues to be 'mundane' and that Hope continues to thrive! I LOVE THE MUNDANE LIFE LOL!

Anonymous said...

Great photos! Good news!

Well, she's a great girl, so of course she looks good on "film." But I love the way you caught her sense of play. Can hardly wait to see her (oh, and you two, of course).

Grandma K.

Anonymous said...

Delighted to have finally met Hope and, more importantly, to know she's getting over her cold. She's adorable in pics but moreso in person.