Early this morning Connor and I drove up to Renton for Connor's Family Conversations summer play group. They let all of the "graduated" kids from their Deaf and HoH play group come back during the summer, and they hold the sessions in various parks and playgrounds all over Pierce and King county here in Washington state. It was rather cold and blustery today, but we still enjoyed seeing Connor's old therapists and meeting some of the cute new little guys and gals in their birth-to-three program.
We left a little early and stuffed some food in our faces before rushing off to physical therapy, where we learned that Connor has officially outgrown his back brace, and since he's still a little curvy, we probably need to be seen by an orthopedic doctor. We'll add that to our list of specialists, and go get the referral when we're seen by Connor's new Primary Care Manager (PCM) later this month.
About that, by the way-- you'll recall I was not very pleased with the state of things on that front when I left for Dallas. I finally received word this week about Connor's new PCM... and he's a resident. And not even a resident that's been there a while: a fresh-out-of-school-this-is-my-first-time-practicing resident. I'm so thrilled. Because, obviously when you've got a kid with three four-inch thick medical files and mulitple life-threatening conditions who's hospitalized anywhere from ten to fifteen times a year and is seen by ten (or fourteen, or whatever it's up to now) specialists, the person you want in charge of keeping track of all of it is someone with the least amount of experience possible. No doubt this will make things run really, really smoothly. Riight.
I'm not upset about this or anything, can you tell?
We have an appointment scheduled with our shiny new doc on July 22nd, and during this appointment, I will have to:
1) Introduce myself and briefly outline my son's 12-inch thick medical history and 25 or so current conditions, practically all of which are ridiculously rare.
2) Renew all of our EFMP (Exceptional Family Member Program) paperwork, which is due at the end of July if we want to keep our respite care, priority housing, compassionate assignment, etc. The insurance company suggested during our discussion about appointment length that we should have done this back in June but as I reminded them there was that small problem of NOT HAVING A PCM TO FILL OUT THE PAPERWORK. Rar.
3) Fill out all of the paperwork that Connor needs for his health plan so that he can start school.
4) Get a referral for the orthopedic doctor and let the PCM know about all of our current pieces of medical equipment on order (I believe there are eight) in case the insurance company calls him wanting to know if they're necessary.
They originally wouldn't let us have an appointment until August, despite the paperwork due at the end of July. I had to have someone from the EFMP office actually go down and bully them into giving us an appointment before the end of the month. Here's the real kicker-- despite my and the helpful EFMP person's exasperated insistence that we needed a longer appointment, they still only scheduled us for thirty minutes.
I'm brushing up on my Valley Girl accent, as I figure that only by talking at approximately the speed of sound will I be able to cover all of this information with the doctor during the time allotted.
I love my insurance company. I especially love the fact that at this point they've shelled out somewhere around 1,300,000 dollars in medical expenses for my child, (and continue to pay around two thousand a week in therapy, medical supplies, and medication alone) and we've had no co-pays. You can't really beat that. Every once in a while, though, I really wish I could give the whole system a good kick in the pants.