So, we pulled the Exogen out of storage, put the gel on, attached it to her, got her set up with a show, and let her turn on the Exogen. The first thing is showed was the calendar filled with X on each day, because we hadn’t done treatment in Read more…
Here we are. Back at Stanford. It was only about 2 months ago that we were here saying goodbye to Dr. Hoffinger. This is also where we met him. Maybe lightning will strike twice? Anyways, today we are meeting Dr. Frick. Dr. Frick was recommended to us by Dr. Stevenson, Read more…
Giant. Ball. Of. Emotion. Today was a visit like any other. I had hoped for good news, but I was prepared for Dr. Hoffinger to tell me nothing had changed. I had hoped that he would give us clearance for a hinge, and I wanted to talk about limitations in Read more…
So, today found us back at Stanford a little early. Originally we were scheduled for next week, but she’s been kicking her brace off more and ore due to increased pain, so we got her in right away. Thanks to the iPad, she was plenty entertained, and had no problem Read more…
So, I’m semi-sitting here in shock. We sat down to do Amy’s treatment, and what do I get??? This screen. ? Apparently Exogen is only FDA approved (and tested) for 180 days of treatments. Also, if you don’t use those 180 days, after 270 days, you get this screen too. Read more…
I heard from Dr. Hoffinger today! He is very pleased with Amy’s new x-ray! He said, “Keep doing what you’re doing, keep going to that church, saying those prayers, doing those rain dances, whatever you’re doing, KEEP IT UP! Change nothing, and come see me in a month.” Amy’s (awesome) Read more…
So, today was the day. Dr. Hoffinger said that Amy would start to feel better when one of two things happened: A) Her graft heals to the point that the bone hardens at the bottom, ending/lessening her pain. B) Her graft breaks, releasing the pressure on her leg and ending/lessening Read more…
So today we headed back to Emeryville to see Dr. Hoffinger. So that means, we get to ride the train! ? It is SO much better than driving. It takes the same amount of time (or sometimes less), and costs about the same. Also, breakfast! Anyways, we had a very Read more…
Today, Amy’s little brother had his first NF appointment with his geneticist. Amy tagged along, so that we can start getting their yearly NF appointments synced up. The appointment went well- nothing super surprising. Her brother has NF1 *gasp!* and they need to have their blood pressure and spines checked Read more…
Last night was one of the longest nights in my life. Amy had a terrible night filled with muscle cramps. I feel like I’ve hardly slept, and Lauren is a total zombie. All through the night, the silence was suddenly split by screams that would break your heart. We medicated Read more…