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!


  1. The last option sounds the best, and then you would have therapy through school like you said. Sorry that you guys have to make such hard decisions like this!. Let me know if you want to get together and talk and I'll be there. Love you guys!


  2. Hi Katrina,

    We have found that life rarely ever gives us a moment to rest. It seems that just when everything seems to be going well a new challenge will present itself. Just like you, the decisions are endless when it comes to our daughter Brooklyn (who has CP) and I am constantly questioning each and every decision I make- all the while hoping that I am doing the best for my daughter. I am wondering why Medicaid is not willing to pay for Bryce's therapy? In our case Medicaid covers all of Brooklyn's therapies once our primary insurance (cigna) runs out. Brooklyn is in kinder now and has been given school/ECI services since she was six months of age. I never found the therapies provided by the school or ECI to meet our needs so we have always maintained private therapy as well. This year Brooklyn still received school therapies but we have regular private therapy sessions every day of the week. It is a constant balance challenge and we have an eight year old son to balance all of that with as well. Have you talked with a case worker with your private insurance to see if you can appeal the therapy limit? Not sure what the right decision is- not sure there ever is a right decision- just do what you feel is best for Bryce, but also for your entire family. One thing one of Brookie's doctors said to me when she was first diagnosed was to not let Brooklyn's condition rule our family and to make decisions that would benefit us as a family- not just benefit her. Little hard to do because as moms and parents we want to give our children everything, but a happy family will provide more therapy than any form of tranditional therapy ever will

  3. I feel your frustration! We haven't been able to afford any private therapy for our son and have had to rely on ECI and now, school. It's been incredibly difficult with that and, although we feel we have missed some things not being able to give him intense therapy, we know that we have done the best we could with what we had. I don't think there is ever one right decision. Currently, we our house is on the market so once it sells, we can afford some private therapy to meet the gaps that school won't cover that ECI did. Most people don't agree with our decision, but we think we are doing what is right.

    It's only been two days since our son has been in school, but he seems to love it and is showing more interest in doing more than he has before. I'll be praying for y'all and remember that at the end of the day you have to be happy with the decisions you make for y'all...I know, easier said than done. Good luck! I'm sure y'all will figure it out. Every time I read your blog I smile thinking about all amazing things you do for Bryce all the time.


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