Delivery day! I was grumpy today, because Amy’s Little Brother took a small part of her wheelchair off. I ordered the part he took (and lost!) from Medline (the wheelchair company) but I’m hopeful it will turn up. (Ugh!) 3 year olds, am I right? Positives: With shipping it was only about $20. Negatives: Probably won’t be here until next week, as it’s coming from Wisconsin. Anyways, no school today, (because turkey) so we headed 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 I got him to set it on the day before (December 9th) so that Dr. Frick would be back from the symposium, and we could 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 told her what my mom always said, “It’s better to have it and not need it, than to need it and not have it.” We Read more…
Here we are. Exactly 2 weeks from my last post. Exactly 1 day after hugging my baby while she cried, because I don’t have the power to make it stop hurting. For the last two weeks, she has spent more and more time in her chair. Every day for the last two weeks she has been chair-bound at school. At home, she whips off her brace lightening quick. As she can’t walk without it, she Read more…
I caved. I wrote Dr. Frick early, told him about the bone grafts, and my confusion. He returned my email in less than 4 hours. Impressive!!! Here is his reply: I did speak w Dr Karol- she recommended bone grafting the site that has not healed. She does not typically use bmp. I also spoke to one of her partners who also has a lot of experience. He was worried about appearance of tibia and Read more…
So, I’m on Facebook doing me thing, and then up pops a member of our community, saying, “HEY! I ran across Amy’s video on YouTube, very cute.” Wait, really? Like… in the wild? I thought that was pretty cool! So I decided to google without the benefit of cookies (Incognito mode) to see what popped up. I DID find Amy’s video, not too terribly far down, but more importantly, I found this great video! McFarland Read more…
So, we managed to get into Hanger to see Cammie pretty quick, so that’s a blessing. So I was super happy to give Cammie the good news that Amy had not fractured. *high five* We talked about adjustments to the bow side, and to the gaping side. She said that she had collaborated with Spenser, and he has a theory that she’s just had a growth spurt. It could be the cause of the changing Read more…
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 months. “33% compliant” it read. Wow, that’s a lot higher than I would have thought, considering it had been so long! Then it clicked to 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, Amy’s NF Doctor. This is his video: https://youtube.com/watch?v=aC7_AS1b64M%3Frel%3D0 Apparently he is really interested in NF and NF-related orthopedic conditions. As a self-admitted “foot and leg Read more…
I can’t even begin to tell you how I feel right now. Amy’s Dad is all but dead set against Florida. On top of being at odds with him, I’m freaked out about financials with 4 other kids to care for, and me still not working. I’m sure that he is feeling the pressure for caring for all 7 of us… On top of all that, we need to make a decision about Paley in Read more…
