Amy absolutely astounds me. Her recovery from this surgery has really been night and day different from her last time. At 4 days Post-Op, she was pretty much her old self. She had only taken a single dose of narcotic medication since discharge and was happily on Tylenol. She was Read more…
12/10 5:00am It begins. I’m on my phone. Not terribly nervous, but can’t sleep. Waiting for the numbers to click to 5am. It finally does, and the alarm rings. Okay. We’ve got this. We dress, with terse words between Amy’s Dad and I. Snipping and back biting happen, stress – Read more…
So, here we are. The long awaited day, here at last. (Almost!) After dropping off Amy’s Little Brother at preschool, we got in the car, and headed to Stanford. (We are so unbelievably thankful for our amazing support system at home!) Moments into the trip, we heard choking, then retching Read more…
Okay, so we have a plan. Stanford called. (Okay, I got impatient and called.) So, the plan: Surgery is on Tuesday, December 10th. The plan is to spend 1-2 nights in the hospital, so hopefully we will be discharged on Thursday. We had some room to play with pre-op, so Read more…
I feel like we have waited ages for thie appointment. Amy has been out of school, but then suddenly over the weekend, she seemed to be better. She even said she didn’t want to take her wheelchair to see Dr. Frick. She was really mad when I insisted. But I Read more…
“Look at my leg! I have a cast, it’s broken.” I’ve heard that a lot over the last few days. Amy is super aware that her leg is broken, but she doesn’t realize what the implications are. She needs surgery, and based on our experience with the McFarland, I know 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…
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…