We arrived about 30min early, and stood in a short line (there were 2 families in front of us). We never received our new patient packet, so we had papers to fill out. Plus we needed to turn over her x-rays, shot records, insurance card, social security card, and birth 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…
So, I got a phone call today, and Amy has been officially accepted for care at the Shriner’s Hospital, which is wonderful. But, her appointment is set for 9/2, which is more than 6 weeks away. So that’s a bummer. Additionally, she is being seen for “leg pain” which makes 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…
The plan for Amy? I have no idea. Once her orthopedist said that her condition was out of his area of expertise, he referred us to Shriner’s Children’s Hospital. They have her medical records, and should get back to me within the next 24 hours. Assuming they accept her case, Read more…
Why? Because of friends. Specifically, new Facebook friends. I haven’t really been very open about our journey yet. For me, that’s unusual. When My older daughter had her first seizure, the first thing I did (well, after calling family) was post on the way to the hospital, asking for prayers. 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…
I just talked to the hospital. Just because her condition isn’t on the list, doesn’t mean they won’t treat her. After they receive her medical records (which should be today) they will send it to the orthopedic team and make a determination on whether or not they can treat her. Read more…
This is my beautiful little girl. Her name is Amelia Rose, and this month, she turns 2 years old. The big thing on my mind? Amy’s birthday party. We’re having a pool party, and it’s all about Elmo, her favorite character. Before today, it was the most important thing of Read more…