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…
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…
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…
Today was another hard day. It started at Zero Dark 30 with screaming. I have no idea what time it was, I just ran to her bedroom while she howled. She begged me to make it stop, and for the first time as I massaged her, I felt it. A Read more…
Sometimes I feel like CPT is a roller coaster. Things have been pretty good for a long time. Halloween was so fun, and Amy surprised me by hardly riding in the wagon at all, preferring to a dash from one house to the other. Wednesday night she had ballet, and Read more…
So, I decided to do it. I’m acting against doctor’s orders. Because, rebel. I’ve been thinking about this since I posted Tuesday, and I finally decided to do it. Why the hell not? So, here’s the deal. Amy has an Exogen Bone Stimulation System, right? It has an unlimited number 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…