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 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 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 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, Amy’s doctor just called. The news is not bad, but it’s not good either. Amy’s graft, while intact and doing its job, isn’t healing as well as we would like at the distal (bottom) end. So, we’re going to try something new. Bone stimulation using ultrasound technology. So, we Read more…
So, tomorrow is the big day, taking a big step in our CPT journey. We are meeting with our first doctor at Shriners Children’s Hospital, and I’m not going to lie – I’m nervous. I’m hoping for the best, but I honestly and truly believe we’ve been assigned to the Read more…
One Step Forward! I got an email today from Dr. Paley from the Paley Institute! I had asked if there was anyone out here that he had confidence in that performed his Paley X-Union procedure. Sadly, the answer is no. So that was a bummer. However, he DID say that Read more…
So… We’re waiting. 1 to 2 weeks to hear from Shriner’s. But I’ve never been good at waiting with my thumb up my butt. So… Research. This is going to be a long play. Like, greater than a decade. So, here we go. This sucks. A lot. Congenital Pseudarthrosis of Read more…