It’s not that I mind being accidentally kicked with it. I don’t mind being stepped on with her plaster foot. Although I am a little grumpy about her sanding away at my wood chairs. That kinda sucks. She is walking better, so that’s positive! But the way she drags her foot, that really bothers me. She can walk now. Really quite well. But she’s walking on her toes, which, hey! If it works, do it! Read more…
So here we are, day after her appointment, and here I sit, a little grumpy. First, my child is in pain, because her cast hurts. I think the angle her knee is bent at is too extreme. It’s forcing her to walk on her toes, and it hurts her. Just watch: I called the hospital, and spoke with the doctor on call. She thinks it’s possible that he purposely bent her leg at that angle Read more…
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 certificate. We got through 4 or 5 questions before they called us back. (No wait! Cool!) Usual doc stuff, height, weight, temp, and we went 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 wrong doctor. The one we have now, Dr. Vendant Kulkarni, says on his profile that “His work is devoted to treating children with all types Read more…
Amy saw the orthopedist today. He gave me a little more padding so I can continue to pad the top of the cast until Friday when it will (probably!!!) come off. Daddy also neglected to put a diaper on her yesterday. Ugh! But the doc also said that if she HAD peed on it while running around in a swim diaper, that there would be no mistaking the smell- So Daddy is off the hook 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 absolutely no sense to me. 1. She’s not in pain. 2. This just seems like a gross underclassification to me. 🙁 Anyways, the girl who 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 he has had success in the past with our insurance covering the procedure. He thinks that if we have a surgeon out here 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, I should be able to make an appointment at that time. Until then, I can only make guesses. I can guess that her doctor will 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. So many are following and cheering her on. It’s amazing. Now here we are, after going through hell, with hospitalizations, and drug changes, and more 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 the Tibia is regarded as one of the most difficult conditions a pediatric orthopedic surgeon can deal with, which is why her doctor said right Read more…