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 no one here preforms it, that that in his medical opinion, that it’s her best bet, then we MIGHT be able to get it covered. So THAT is very exciting! If we only had to find a way to pay for travel expenses back and forth, and our stays there (which looks like it could range from 3 weeks to 2 months – for the initial surgery ouch!) it’s very much an idea that’s still on the table.
So, that’s a HUGE relief. Always good to have more options. Especially when one option is the single greatest orthopedic surgeon IN THE WORLD. I kid you not.
Anyways, before you tell me to hold my horses, I know I’m completely getting ahead of myself here. I’m certainly not rushing down to buy plane tickets. I don’t want to make any mistakes.
Step One – Shriners Children’s Hospital.
I want a doctor to look at her. A doctor with experience, who can clearly explain to me what the risks and benefits are in bracing her until she’s older ( 3, or even 5) or fractures. I know what Dr. Paley says in his book:
“The treatment of the unfractured anterolateral bowing is controversial. It is assumed that these represent a preCPT. The exception to this is ALB associated with a duplicated big toe with hallux varus. This type of ALB is benign and is not subject to fracture or pseudarthrosis. More commonly however ALB without fracture is associated with NF or Fibrous dysplasia and is a precursor to CPT. The most accepted treatment is bracing. Brace treatment has been shown to prevent fracture. The McFarland bypass graft has also been used in these situations to prevent fracture. Neither of these treatments prevents the secondary compensatory changes that occur with a chronic anterolateral bowing. These include: calcaneous ankle joint contracture, cavus foot deformity with verticalization of the body of the os calcis, weak push off, valgus ankle, lateral subluxation of the talus with proximal migration of the fibula, and leg length discrepancy.
“To prevent these secondary changes, I prefer to osteotomize the tibia in patients with ALB without fracture. This approach is frowned upon because it is assumed that the risk of pseudarthrosis is too great. I treat ALB without fracture by the same protocol as CPT. Since I am able to get CPT to unite in all cases, then getting a preCPT case to unite after osteotomy should have the same outcome. The treatment protocol is identical with the only exception that there is no CPT and instead the surgeon performs the osteotomy at the apex of the angular deformity. Once this is done the rest of the treatment is the same as the Paley X-UNION protocol.”
I should have asked him if there was any benefit to waiting. I hate the idea of of putting her through more pain… but wouldn’t it be better to have it over and done with while she’s too young to remember? I will ask him in my next email.
There we go. Cart before the horse again. *sigh*
Anyway, Step One – Shriner’s
Two Steps Back
I called Shriner’s today to see why I hadn’t received a phone call about making an appointment yet. They said 24-48 hours, and that clock expired yesterday afternoon. Welllllllll, it appears that I misunderstood. That 24-48 hours wasn’t time for her case to be reviewed, it was time for her paperwork to be PROCESSED. So, the orthopedic team now actually has it, and in a week or two (from Monday, 7/11) we should have an answer, and THEN be able to make an appointment for… hopefully not too far out.
So, that’s a bummer.
Amy has her 2nd birthday party next week, and it’s a pool party. So I guess it’s time for me to pick up one of those DryPro cast covers so she can have a good time.
As far as everything else, looks like I’m hitting the pause button for the 1-2 weeks. I’m not a fan of the pause button, but I have to know that there is a plan God has for her. I just wish He would clue me in on what it IS.