Monday, November 24, 2008

10 days

Ten days until we can remove this cast.

This one went by quickly, didn't it? Or, perhaps it's just the rush of the season. That time from Halloween to Thanksgiving to Christmas goes so fast anyway. This year my Mom is coming to town right in the midst of that Turkey to Santa time, making it go even faster for us. And, of course, another cast.

This cast would be number, what, nine? Nine, I think. 16 months. It goes without saying that we're so ready to be finished. But, like I hear so many times from other casting moms, we want it finished when it's meant to be finished - and making that switch is so nerve-wracking. What if we kept going? Would we push through the plateau? Resolve more rotation? Improve rib deformity? Improve RVAD? Push off surgery for another year? Another decade? Forever?

Like much of medicine, it's a guessing game. We've learned over this last 18 months that all we can do is guess. We try to get the most information and make the most educated guesses, but when it comes down to it - it's all unpredictable.

I recently met another Mom online who has a child with Neurofibromatosis. She mentioned that Cardinal Glennon was fantastic and, in her experience, superior to Children's - so we may take Jack in for a second opinion there. We have all this time anyway, might as well do something to fill it, right?

So, again - we wait. Jack isn't eating anymore, really. He likes larabars and envirokids bars (which we recently discovered have almost zero nutritive value). He ate eggs for about four days in a row, then stopped. He likes cheese sometimes and chips always. But, mostly he drinks. I can manage to get some VitaminWater in him, which is a favorite ("Orange vita-water, Mom"). But, when it comes to solid foods - not much luck. He isn't even eating noodles much lately, which are his favorite.

Last night he begged for his cast to come off so he could play in the tub with his sisters. They had his Nemo toys out, swimming around, and he was no longer content to just reach over the edge and play. "Cast off!!!!" It breaks my heart. Some days we'd welcome the news that casting is no longer going to help. But, then we go from 40s to 20s and it seems like a no-brainer. We have to keep swimming.

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