First off, GOOD news to share! Any is inexplicably herself again! She hasn’t used her wheelchair in nearly a week, and it going back to the garage! In the mornings, she gets up, gets braced, and goes on with her life. I’m hoping that tomorrow we can move her bed Read more…
For nearly 2 months now, I’ve been hearing my daughter talk about the “zipper” shoes. They are Billy Footwear shoes, designed for kids who wear AFOs. They look SO cool. Today, both pairs arrived at long last, and we made the hour+ drive to the mall. Amy was having a Read more…
I watched Amy sleeping this morning, reluctant to wake her. Once again, she was Schrodinger’s baby. Would her leg hurt? Or would she be comfortable to get up and walk? If I didn’t wake her, then she was both and neither at the same time. Only one way to find Read more…
Baby it’s cold outside! Today were getting a new brace, and Amy is having a good day as far as pain is concerned. I’m nervous about what’s going to happen, but she’s excited to get a new brace and new shoes today! (Good Lord! Shoe shopping. ?) We have no idea Read more…
Not too much of an update, but I know people are curious, so I thought I would give one. After spending all week on round-the-clock Tylenol, Amy immediately pulled off her brace after school on Friday, as is her new usual. She’s officially has hit expert level in her wheelchair, Read more…
Amy slept through the night for the second night in a row. No painful wake ups! We got her up early and started the day with a warm bath. It was a struggle to get her in there, (she likes mornings about as much as I do) but then she Read more…
I was worried about Amy going back to school today, she hates wearing her brace now, and going without a brace was *NOT* going to be a choice. She woke up in a combative mood, refusing to go to school, and insisting that she stayed home with me. I was 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…
Amy has been a lot better. She been on her feet, running around. She’s been thrilled that her cousin is visiting. Her wheelchair is back in the garage where it belongs, for the most part. She plays and has fun like a regular kid… until she doesn’t. Then the screams 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…