Wednesday, November 20, 2013

Dreaded Phrase

"This is something we often see concurrent to the ARM Bubble's has - we're just going to (insert medical procedure/testing here) to rule it out. And then you will have to follow up with (insert specialty here)."
If I had a dollar for every time a doctor said this to us, I'd pay for all these procedures-and the hospital stays!- out of pocket.
According to my Gmail contacts list, Bubble's team is now 20 strong. Some of the contacts listed actually refer to DEPARTMENTS not individual team members. And counting.
Daddy actually asked the surgeon, when he gave us this line for the gazillionth time,why we keep hearing this. Dr. B. told us that most parents cannot handle knowing all the possibilities at once, so they kindly give it to us piece meal.
Right now, our focus is checking for spinal defects and possible back tracking in the urinary tract. Once we clear that, we can shift to surgery mode. Since scheduling surgery requires so many factors to come together, we have already scheduled it, without knowing exactly what will be done. We have to wait for testing to determine that. Once all that Cutting-and-Pasting is out of the way, we'll start on physical therapy, possibly speech and occupational therapies as well -- because, you know, "We often see developmental and cognitive delays concurrent to Bubble's presenting ARM. So, we're going to be proactive and enroll him in the Early Bird Avoids Unnecessary Difficulties Program. We're confident that he will be accepted to the Program with his medical history."
We know (because we've tried) how hard it is to join this program, so we held our breath through the application process. It seems that severe shortages of therapists and social workers don't get in the way if your case is referred by a doctor. If we'd only known this when Careful wast not talking, we may have secured services for him too!
Obviously, that wasn't in G-d's plan for us. 

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