Saturday, February 7, 2009

A step forward.

Yesterday was Emily's appointment with Dr. Brian Smith over at Yale. Kate and I, while ever-hopeful some doctor is going to kick the door in and tell us about some quick-fix solution (have her take this pill! She'll grow a full femur by the weekend.) we're fully prepared for this guy to not really be up on the latest information. How could he be? Nobody's holding benefit concerts or 5k walks for PFFD. It's really not on the radar of the general public. But he is a doctor and I've heard Yale is a pretty good school so let's give this a whirl. Frankly, if he can give us one piece of information we didn't already know AND we get a peek at her most recent x-rays, I'll say this was a success. 
It should be noted that Dr. Smith was a very nice, intelligent, soft-spoken man. While he was aware of PFFD and it's complications/treatments, his experience with it was minimal and he couldn't tell us anything we hadn't already learned through almost constant study in the past six months. (This was something I was apparently poor at hiding. Afterwards, Kate tells me "you have problem parent written all over you.")
What Dr. Smith did do was to give us the name of the Chief of Medicine at the Shriner's hospital in Springfield. Regardless of Emily's treatment program, she is going to need all kinds of prosthetic work. With these devices costing thousands of dollars and insurance companies being what they are (read: stingy), it's certainly nice to be hooked up with the head honcho of a place that's known for its quality, free work. 
Without question, looking at her x-ray was the part I was most on edge about. I can watch Emily move and play and see that leg kick around and say to myself "I swear there's something going on in there. It's growing, right? Look at it move. It's grown. It's working. It's going to be fine. Right? Right?" But, seriously, what the fuck do I know? Oooh, you took anatomy and physiology seven years're a genius! What are the odds I'm setting myself up for a huge fall? 
Dr. Smith pulled up the x-ray and immediately I felt better. There was her femur...short and bowed, but looking strong. He pointed out a number of crucial aspects like the apparent development of a good hip joint and knee. He agreed we're still looking at a potential discrepancy of eight inches. Perhaps the most important thing he said was during his discussion of the different kinds of PFFD. "There are multiple classifications and this appears to be a milder case." 
Like I said...success. 
Two more weeks and we get to sit down with Dr. Paley in Baltimore. This will be the true test. 


AS said...

Paley will fall in love with her and then he'll want to keep her and then you'll tell him "no" and then he'll buy her the hospital and then...

AS said...

I keep coming back to this particular entry and re-reading it. Is there some sort of limit as to "times visiting same blog?" Am on pins and needles re: interview and exam by the king of the hill next Sat. Beautiful pix of Emily and Kate taken by my Sa this week. I printed it and put it up.