We had Genetic appointment scheduled at a "nearby" (3 hour drive) children's medical facility. So Wednesday started at 3:45am in order to make our 8:30 appointment. We decided to make it a "family day" and stop by to see friends we had made in China. Well the appointment went LONG and so the outing to the museum was cancelled, but two trips later to a nearby mall and five kids had Lego mini figures, one had a Build-a-Bear, lunch (my first real meal) was finally consumed and we were headed to our friends.
What was supposed to be a 1-3 hour appointment ended up being almost 5 and during it I had to explain all that we knew about Lilly then we went down for testing (expected). It took two sticks to get enough uncoagulated blood for the tests, she DIDN'T like that. I also got to hear how her left femur and tibia (?) have healing fractures?!? (unexpected!!) and we got to wait while the radiologist conferred with ortho about whether or not we needed to cast (!!), since they are of an approximate age to the healing fracture in her right leg which IS cast!. The other news is that she has compression fractures in her vertebrae and that her scapula (shoulder blades) have been fractured. When the radiologist told me this, it took all I had to hold it together. I wanted to just start sobbing. The pain she has endured... and she doesn't complain. Lilly has such a sunny disposition and is so outgoing and here she is walking around on two broken legs, with a broken arm and all this other stuff! The most frustrating part is China has her last xrays showing a fracture dated june 2010. It is very hard to date a fracture and so we may never know when these newest occurred. The fact that they are healing is good, but also means they've been there awhile. Fortunately, we do not have more casts (as of right now), Rick did famously with five kids and "nothing to do" for five hours and the boys got along great with our friends sons.
All in all it was a good day and by the time we made it home and got everyone in bed and finally ate it was only 11pm!
These were a welcome and easy to fix treat that we took on the trip. I think I might give up buying GF granola bars at $3.23 for 5 1oz. bars and just make 'em! I used 2/3 c. GF rice krispies, 2/3 c. sunflower seeds and 1+ c. of craisens as my fruit and nuts. (my next batch will probably have some allergen free chocolate chips, YUMMY!)
As a note today, I was able to download a free program and view all the xrays we had yesterday and see just what the radiologist was talking about. Kinda cool with my science background and us studying Human Anatomy and Physiology with the boys this year. Though it looks like her left fibula has the healing fracture to me, not the tibia...
We may have to go back for more (very expensive) testing if these tests are not conclusive, so please be in prayer that with all 24 x-rays, the DNA testing and all the other blood tests it can be conclusively determine that she has Osteogenesis Imperfecta or whatever it is that she has that makes her break easy.
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