Wednesday, November 25, 2009

While We Wait

Another Tom day at the ICN. The trach's been scheduled for Monday. Awesome Nurse Donna told Tom that the former Dr. Brusque said that Jane's out of the woods with the ROP. Apparently her eyes have matured enough that the damage won't get any worse. I have no idea if it can/will get better, but for now I'll happily take not getting worse.

Oh, oh, and get this! Dr. Brusque missed me! What is going on in this wacky ICN world? Turns out that I'm the rare parent who sticks around to watch every exam. Okay, maybe that's not such a surprise. Anyway, I think it's a sign we've been there too long: the curt opthalmologist is asking after me. Curt! That could totally be his new name. Except he isn't anymore. Any thoughts, invisible readers? Speak up!

You know, if Dr. Brusque can recognize me after ten or so visits, you'd think the security guard who has seen me most mornings for FOUR MONTHS would stop asking me the nature of my visit. Not that I find it annoying or anything.

Anyway. While we wait for Monday, here are a few more of the many faces of Jane.

We're still able to get some adorable photos:

But then we start to head in a grumpier direction:

Quickly followed by full-on crankypants:

I can't wait for her to get that thing out of her mouth. The awesome developmental specialist has been trying to see Jane awake for weeks now. She finally got to see her in action today, and was pleased to see how well Jane tracks visually, but thought she was unhappy. "Big tube," Donna was quick to point out.

Monday can't come too soon.


annachorn said...

My thought is that you're probably THE MOST HANDS-ON Mom they've ever seen. Four plus months is a long time to maintain the consistency you (and Tom) have maintained, especially when you're driving a significant distance each way. And, YOU HAVE a THREE-YEAR-OLD! Amazing to me how you've both been able to sustain your sanity, and a seemingly normal family life with Sarah, in the midst of these never-ending challenges. Absolutely outstanding role models for all of us navigating life's unknown paths. I would hope THAT was what finally got the doc's attention, if not the security guard's. Would like to think every couple would be as devoted as you and Tom, but I'm sure that's probably not the case. As far as the trach, looks to me like you're following Jane's lead. She definitely seems to want those tubes out of her mouth. I applaud you and Tom for "listening" to her - as difficult as I know that is going to be. She's making the decision for you here, so that should make this more tolerable. And, great news about the ROP not getting worse. Looks like she's making more progress every day on that score. If we could only fast-forward a couple of years - beyond the ICN, the trach, the fears...Meantime, Jane continues to grow, and becomes more beautiful with each photo. Thanks for sharing. And, those little critters? Very cute. You are a woman of many colors, and your daughters are the beneficiaries of your boundless commitment
and talents. Hope you enjoy your Thanksgiving tomorrow, and lots of prayers that next year's will find you all together, comfy and warm in your own home. Love and best wishes. Ann

artandsoul said...

Ditto everything Ann said! You're an absolute model of what we all would aspire to - in any kind of challenging situation: supportive, attentive, consistent, open, present, hopeful and positive. I know you must feel like you hit a wall at some points - totally natural feeling!

But you come right back to the present and what's before you, with incredible grace and stamina. I think ultimately that is what is keeping Jane moving forward too. She is getting that sense of movement, endurance and progress from her family!

I mean, who WOULDN'T want to get the heck out of there and get home to you guys?

Here's hoping you have a lovely and yummy Thanksgiving Holiday and lots of wishes, prayers and hopes for the next stage of this process.

I loved the "action" shot with her hands moving - she's really an incredible girl!!

Hugs and Happy Thanksgiving,

(p.s. I know what you mean about the Security Guard ... I feel the same way about the pharmacist that I have been to twice a month for the last SIX YEARS when he asks me to 'verify your address' - I mean, really? Are there THAT many Joe Jacobs with Rheumatoid Arthritis who come in here to refill 11 prescriptions every month?? Really?)