Justin's Journey

I had mentioned before in several different posts that Justin is being treated for torticollis and plagiocephaly. On Friday we had his appointment with a fantastic doctor, the head of neurosurgery, from Dupont. Justin who has been great at PT and the doctors in general got such a pout and a whimper when the doctor was looking at his neck and head. Perhaps he knew what was coming. Dr. Campbell took a look at Justin's head and neck, all while I was holding him. Then we talked about the different options for him and decided he would indeed benefit from a cranial molding helmet. This sounds like a lot more than it is, but it is something that will take some getting used to for everyone, hopefully Justin will adjust quickly. We will go back for a follow up visit with the doctor in 4 months.
The helmet will be worn 23 out of 24 hours a day, for at least 6 months. But it will really depend on how Justin's head does with the helmet to see how long he really will be in it. It will provide pressure, opposite of where his head is asymmetrical at this point, in hopes of getting his head and face more symmetrical. We are just now starting the journey of looking for an orthotist to fit him for the helmet. The helmet will need to be refitted approximately every 2-3 weeks, so we will be in this for the long hull. Hopefully we'll find an orthotist who accepts our insurance and then hopefully the insurance will cover the helmet, but most likely that will be a battle as well. Medically speaking the doctor has said that Justin's asymmetries are great enough that it should be covered, yet insurances are typically very reluctant to pay.
It will be strange at first to see Justin in a helmet so often and in all of our pictures. Guy was even a little surprised that he really needed one. It didn't come as quite a shock to me, but I'm glad that I pursued the issue and hope that in a relatively short time the helmet will help Justin. I hope that the insurance issue doesn't burn me or Guy out and that all works out for the best. PT wise Justin is doing very well, both in the office and at home. We're still waiting to have him evaluated for early intervention, he should qualify based on his diagnosis, which will just help him even more. Even though I know how to and treat other children with the same diagnosis, I can't be doing everything that I may like to be doing as often as I would like for Justin. For me it is differnent being on the parent end of the spectrum, but thankfully I have the backgroud of a PT as well, and I believe that will serve us and more importantly Justin, very well. So we have officially started a new journey with Justin, his PT--torticollis, plagiocephally and hopefully a helmet.