Over time we've collected some docs we really trust and that have been pretty much on the mark with suggestions for improving Ben's health. We have been blessed with many great care givers that aren't afraid to say they just don't know, but still make good outcomes a priority and possibility. We've also encountered an alarming amount of poor care and some docs that were extremely confident in their pessimistic expectations for Ben's future. We are so thrilled to have proved them wrong with all the walking, talking, thinking, and breathing going on over here!
Yet, after some sleepless nights worrying over the latest illness, I fell into another rabbit hole. I accepted a low risk offer that came about from our visit to the NIH last fall. The deal was a chance to see a neuromuscular specialist three hours away. No co-pay, no procedures, no missed school. We'd be put up in the Ronald McDonald house for free and the appointment was made with little effort on my part. Why not? Plus, we got to see the world's largest rocking chair on the way.
|First night in a Ronald McDonald House|
But now, as always happens, I have a new dilemma, and have to make some tough choices. This doc was great and devoted two hours asking questions and examining Ben. He told me that the NIH genome sequencing we've been waiting on encountered equipment failure and is backlogged a year. We don't know where we are on the list. He said of the two possible diagnoses he'd consider, one will show up in that genome, and one won't and will require another blood test, three months of waiting, and a $450 fee that insurance may or may not eat. If that blood test is positive, it's pretty scary news. But like I said, we've been faced with this very scenario countless times. They are always scary and super rare, and awful sounding on Web MD. There's always so much variability in cases and treatment. Will knowing really even help? Not knowing is torturous at times, but knowing could be worse in this case. He gave me the orders. We haven't decided to draw it. Our plan is to ask a doc we're already schedule to see this week for his opinion before we do the stick. He's been there from day two and is the best at looking at Ben as a whole kid. And as ever, we're praying for guidance.
Luckily, we have fun distractions at home that keep worry to a minimum. Who can fret when twirly pink tutu clad imps demand dance partners, unicorn stories, and tiger pancakes? Make that baby tiger pancakes.
Additional note: This morning's homily was about not being afraid to seek the truth. The second reading from Hebrews also mentioned not withholding bloodshed (in matters of standing up for what is right). Then of course, we sang Dad's song, "Lead me, Lord," the one about the beatitudes that also talks about seeking and finding the narrow way that seems to come around whenever I'm really missing him. Granted, this all relates to following God and not being afraid to spread the Word. But still, it soothed my anxiety. Speak Lord, I'm listening!