Showing posts with label leander isd. Show all posts
Showing posts with label leander isd. Show all posts

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!

Thursday, December 15

LISD Transition, EEG, etc.

Yesterday was one long day! We started the day at the Leander ISD transition meeting, which lasted a solid two hours. It went about as expected, unfortunately. I was still holding on to a little bit of hope that they would see Bryce, read his history and realize that he needs summer services regardless of their asinine bureaucratic nonsense. No such luck.

Mostly she said that even if we could qualify him for services what he received would be pretty much worthless anyway. And the only way to qualify him would be to stop all therapy for six months and then assess him to show that he's regressed. WHO IN THEIR RIGHT MIND WOULD DO THAT TO THEIR CHILD IN ORDER TO RECEIVE 2-3 MONTHS OF SERVICES?? It's completely absurd and infuriating.

As it turns out we may have found a way to get him private therapy through Medicaid, which if it works out (fingers crossed) for all therapy disciplines would be an absolute saving grace! It would mean that I can get Bryce all of the therapy that he truly needs for the entire summer without having to have a meltdown at Leander's district offices.

You'd think this would make me not care so much about this ridiculous system to which we dutifully paid taxes to for 7 full years before Bryce was born. Nope. I can't get past how the whole system seems to be set up so that most people don't get the services they need and are entitled to. Unless you make a boatload of money, happen to be a lawyer or both you can pretty much guarantee you're not getting a fair shake.

So that's my rant for today. Sorry guys!

After just enough time for a nap and lunch I took Bryce for his EEG, which ended up being another two hour ordeal. He was so good though. Here are some pictures of him getting his probes attached:




Don't think for a second that I don't count my blessings EVERY SINGLE DAY! I may have to put up with a lot of crap when fighting for Bryce but good gosh, he's {SO} cute & sweet AND he smiles through it all. I don't know what I'd do if he wasn't so easy going!



That doesn't mean that he sat still for the 25 minute test. Here's a fun game to play on a rainy day. Get a two year old, stick a bunch of cords to their head and then see if you can get them to be still for 25 minutes and not pull any of them off. It was a challenge but we got it done!

I kept trying to watch the screen and see if I could see anything:



I saw a lot of things that looked really scary to someone who knows nothing (ME) but finally gave up on trying to make any real sense of it. We don't have any results yet but should this week since they wanted to get them before Bryce's botox on Monday morning. I'll be sure to let you all know as soon as I do.

After the EEG, Poppa picked up Bryce to deliver cookies to some of our North Austin clients. Which gave me a chance to finally stop in and visit a dear preemie mom friend of mine whose sweet little Harper had a hemispherectomy last week. Harper looked amazing - all pink and alert and .... so far seizure free! If you can, please take a second to include their sweet family in your prayers and/or blog reading activities: Twingate.

Thanks, as always, for keeping up with the Molines.