and we are done like a Thanksgiving turkey!
Jackson's healthcare team finally came to a resolution over the last 24 hours and we are working together to get to Phase II - the providence brace. This is the nighttime bending brace we've considered, and agonized over, for a long, long time.
After many hiccups and almost decisions, we felt like we had one really excellent choice as of last night, and that choice is Jackson's new orthotist, K. He's an amazing, friendly, gentle, kind, considerate, responsive, flexible, understanding healthcare provider. We are excited to work with him both tomorrow and in the years to come.
None of us knows what this will mean for his curve. Will he progress? Stabilize? Relapse? Improve? Will he need a brace for a year or thirteen years? We don't know. But, uncertainty is just another fact of life. None of us really knows what tomorrow will hold. It's especially difficult in terms of the Neurofibromatosis for me, but, like the last 500 days of his life - it comes with one sun up and another sun down. Your perspective may change, but the days are always there, like clockwork.
As I've mentioned elsewhere - tomorrow, after dressing a cast for a year and a half - we will dress a little boy. Our fear of dirt, rocks, sand, water (oh - the problems with water over this boy's toddlerhood), popsicles, ice cream, puddles, rain, mulch, Barbie shoes, Polly Pockets, Legos, rhinestones on sisters' shirts that come off in the wash, leaking diapers, stomach viruses, fevers that will not give up, overheating, raw underarms, sore hips, cut skin, abrasions, infections, reflux, digestion, weight gain, mobility and car rides. No more twelve hour drives with six stops along the way. No more cramming five children and two adults into a 5X8 hospital room for seven hours. No more hotel nights with slamming doors at 3AM or getting up at midnight with a screaming baby who does not understand why you won't just let him nurse and go back to sleep. No more anesthesia (for now). No more IVs. No more pleading to drink a couple ounces of juice or soda. No more vital sign checks. No more pulse-ox machines. No more pressure cuffs.
After tomorrow at 10, it is all a part of our baby's life in the PAST. It will always be a part of who he is. He has been through more medical procedures than a typical person goes through in a lifetime. He's seen his fair share of hospital rooms, nurses, and specialists. Over time, I hope his fear of some of these people and things in his life begins to fade. I hope that we are able to continue on a non-surgical path for many, many years. And I hope that one day he is grateful, not resentful, for all we have put him through.
But, tomorrow. Tomorrow is just something many families take for granted.
Tuesday, December 02, 2008
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