Wednesday, January 4

Fun with Numbers

As much as I do love sarcasm, I wish today's title were less tongue in cheek.

After spending the better part of an hour on the phone just now, calling one number to get a "This number cannot be connected as dialed message," then calling another number to get another number where they gave guessed it...yet another freakin' number! After several calls I finally spoke to an actual person, a nice one at that - I'm so lucky!

She was pleased to inform me that Bryce has been on the Medically Dependant Children's Program's waiting list since Sept. 18, 2009 and this August will be considered to have been on the list for 3 years. At this I allowed myself to get a teensy bit hopeful, maybe, just maybe, he was getting close. Then she burst my tiny bubble by informing me that of the 40,000 children on said list Bryce is currently number 24,281.

I can't help but ask the obvious here. What is the point of a waiting list for a children's program if it's so long that they're barely children anymore by the time they reach the top? Errggh.

I swallowed my fury and politely asked if there is anything we could do to get moved up on the list. She .... wait for it ... yep, you guessed it, didn't you? She gave me another number. Okay, now we all just have to get a good laugh out of this because if Bryce's life thus far has taught me nothing, it has taught me that a good laugh, no matter the circumstance, is almost as good as drugs or alcohol. And since Baby On The Way (as I'm now affectionately referring to the bean in my belly) certainly doesn't need to start such experimentation this early on, a laugh will just have to suffice.

So, long story too long, I called the last phone number, where I applied for Personal Care Services to get someone to take an interest in helping me help Bryce get the services he needs. But not before being given one last number, a ticket number for my call...oh, and the number to call back in TWO weeks if someone hasn't called me yet.

Wish us luck!

Monday, January 2

What to do, what to do?

Why is it that anytime you're supposed to relax and take it easy life makes it impossible to do so?

Turns out that Medicaid will not be paying for Bryce's in clinic therapy any more than they will pay for his in home therapy - which is not at all. I am so disappointed because I thought we'd finally figured out a way to get him the therapy he needs over the summer between when he turns 3 and when school starts in the fall.

I have to be careful though because Medicaid does help pay for doctor's visits and Botox treatments when our high deductible primary insurance falls short, which is often.

I got in touch with said insurance company last week as Bryce's speech therapist said that they may cover more than the current limit of 12 therapy visits per year based on his neurological diagnosis. After essentially copying the policy copy back to me they said that in very, very rare circumstances they would cover up to $25 of 10 additional therapy visits per year, after his $5000 deductible has been met. Well, gee - thanks so much! At $110 a visit they're basically agreeing to a very expensive discount program.

So we're back to square one. Except that it's January 2nd and Bryce just completed his first therapy visit of the year, leaving 11 covered visits for 2012. I talked in depth with his physical therapist this morning during her visit and feel like we have a better handle on our limited options.

We could choose to decrease PT from 4x a month to just once, keep ECI Speech at weekly since insurance doesn't pay for it anyway and stop private Speech, Developmental Specialist, Dietician and Occupational Therapy all together. This would mean that we would save enough visits so that he could still be followed by a PT once per month for all of 2012. A far cry from the therapy schedule he's had for the 2 years since he's been home from the hospital. (How is it even possible for time to move so quickly that Bryce has been home 2 years??!!)

Or we could stop everything right now, except ECI speech, and save all 12 visits for a semi-intensive summer therapy regimen in a clinic setting somewhere. But this would still be limited to PT and leave OT out all together.

OR we could just continue to use all of the therapy we have available from ECI: PT weekly, Speech weekly, OT and Developmental Specialist each twice monthly and Dietician every other month, until he turns 3 in June. This would mean that we wouldn't have any covered therapy for the remaining 6 months of the year but as his PT pointed out, the summer will likely go by fast and we may need a therapy break by then anyway.

And with the new baby on the way we really have no business making concrete intensive therapy plans for six months from now. For all we know, I could be on bed rest or - God forbid - we could be back in the NICU. At the very least, we know that I'll be making weekly visits to the OB for checks beginning at week 13.

He'll get therapy from school beginning in the Fall and through the end of the year. We're sure it's not going to be everything he could ideally use but it's certainly better than nothing. And that gives us 6 months to try our hardest to get him walking (with a walker, independent walking is likely much, much further out for our Bryce) before he goes to school. That would make me, his PT and I'm sure many others feel just a little better about our baby going to school.

We still have a lot of talking and deciding to do. At the end of the day the last thing any parent wants is to feel like they did anything less than the most they could muster for any of their children. I want nothing more than to continue to give my everything to Bryce but somehow I have to save some of my fight for the baby on the way. And maybe a little for work, Caleb and me too.

Your thoughts, input, opinions, experience and comments - as always - are not just welcome, but encouraged and appreciated!