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…
We love Carly at the Hanger Clinic in Modesto. She is so awesome! Amy is not having a good pain day today, so again we are braceless and she is in a wheelchair. Honestly, it seems like that’s the way things are most days. I have no idea what’s going 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…
Since the x-ray, we’ve been thankfully free of the cramps that hurt her so. However, mornings continue to be a struggle. She complains of aches and pains, and limps terribly. Then, in latter parts of the day, she seems fine, running, jumping, and dancing. As I write this, I seem Read more…
Well, today was the day. We’ve been using the Exogen bone stimulation for 6 weeks now. Results are typical in 6 to 12 weeks. So, what do we think??? X-rays. The image on the left is from 4 weeks ago (post-op #6) and the one on the right is from Read more…
Well, we made it to the 19th- sorta. Would you believe that this morning, the non-slip bit was coming off AGAIN??? Anyways, today we saw Carly again- who was super understanding about the massive accident on the freeway that made us late. She attached another non-slip surface to the bottom Read more…
Well, we hoped it would last til the 19th… it didn’t. So superglue gets a great big ?? from us. No Bueno. So, who you gonna call? FACEBOOK CPT GROUP Seriously, these men and women are invaluable to me! Anyways: One person suggested superglue ?? Two people suggested contact cement Read more…
Well, the last repair lasted 6 days, so at least the glue held a little. But obviously, we need help. So first off, I scheduled I scheduled a visit with our orthotist at Hangar for a little brace TLC. Among other things, we’ll get the straps replaced, maybe redo her Read more…
So, a day after celebrating her not broken brace, guess what? Ugh! And it’s Friday night, so… that’s lame. So, Amy’s dad to the rescue. We’re trying this guy first. Hopefully it works. As annoying as this is, it’s really nice to have such a no-big-deal problem to deal with. Read more…