A big chunk of what seems like every day of my life is spent arguing with someone about insurance. It’s awful what they get away with. My little boy has been officially struggling since about February, and it was then we knew that no matter what he needed physical therapy. Kids, it’s JUNE and he went for his first real physical therapy with a pediatric specialist (that wasn’t a crazy person) last week. Those pricks said we had un-lim-i-ted physical therapy visits, but with one of their in network places. They offered me two options. One place was in Marlboro (35 minutes away). I called and spoke to them right away. After speaking to the receptionist and then the therapist, they advised me to go somewhere else because they didn’t feel confident they had enough pediatric experience to help. The next place, in Toms River (40 minutes away), accepted us and we made an appointment for the next week. I went a total of two times before I pulled the plug. First of all, it was a large gym full of elderly people. This is a normal sports physical therapy place, but not a helpful environment for a toddler. They had a small handful of toys, and the therapist was lovely and nice but kept telling me I should try to find a specialist that my doctor recommended.
So I fought the insurance. AGAIN. Josh got HR involved from his work. We all got in the insurance company’s face about this outrage. Their solution? Private pay for the sessions and submit for them to refund us. So what did we do? We jumped on that and crossed our fingers. I CANNOT wait anymore. I can’t watch this child struggle without the proper help. I wanted to use the PT that was in the place we already do OT anyway, so I got in. I squeeeezed in. I begged for an evaluation as the physical therapist was going out for a month for surgery, and we needed the evaluation behind us so we could get in with her substitute. We got in for her last appointment before going out. Something went right!
So that’s where we are, hoping that they’ll pay for most of these visits. We won’t know until that first check rolls in, whenever that is. At least he’s getting therapy for now. We are also waiting for the insurance company to approve the genetic testing, which costs over $10,000 so it needs to be preapproved. He’ll be getting a myopathy panel, which will cover all the different types of myopathy. If you don’t know, the thought now is that he has a myopathy versus a dystrophy. They’re both muscual disorders and both involve the protein dystrophin. However, this is probably a better verdict, because a myopathy is an improper build up of muscle and often doesn’t degenerate. Dystrophies are improper breakdown of muscle, and often get worse over time. The test takes 2 to 3 months to process, but if you know me I’m not really in much rush to know for sure. It probably won’t change anything, and there really is some bliss and some hope in not knowing for sure.
So since I am playing catch up from the last blog – what’s new with Harry man? He’s got a neoprene vest to help correct the lordosis (curve in his spine where his belly sticks out) and ankle braces to straighten his feet out. He’s getting used to those. Last week he started walking a little bit with the walker, and was able to control the speed. He’s also been walking holding only one of our hands much more frequently, which is really hopeful. PT says his head control is better but I have a hard time judging that. His biceps are stronger, in my opinion, as one of his new favorite games is to use a little cup and sip bath water. Gross, but it’s a workout! He’s smart as hell and starting to really hold conversations. He’s tall – about 33 inches – and his abs and back muscles are starting to appear. All good stuff. Life is good. I’m trying to lose the stress as much as possible. Thanks for reading. Hopefully I can keep this up here.