Monday, March 3, 2008

One Day at a Time...

The conference of cardiologists at Joe DiMaggio Children's Hospital agreed that there is no need for Lucas to have surgery to close his ASD -- at least not yet. The concensus is that we should proceed with a "natural course" and follow Lucas by echocardiogram every 6 months. If the ASD hasn't closed by the time he's 3, their recommendation would be to have it closed -- mostly for preventative reasons since it might cause issues as he grows such as over-flow of blood into his lungs (that just doesn't sound right!). The interventional cardiologists said they'll need to reassess him when the time comes, but they'd likely try catheritization first and if that doesn't work, open heart surgery. And, so, we take it one day at a time. The waiting game is never easy, especially for a type-A personality mom.

On Saturday, we went to an IEP workshop (Individualized Education Plan -- which is tailored for each child with a disability when s/he enters public school) . Lucas has an IFSP (Individualized Family Support Plan) until he's three and then is transitioned to an IEP. The IEP workshop was eye-opening as we heard from other parents -- some of whom have sued the school system to get services for their child. Having a child with a disability sucks on so many levels, but one of the worst is having your child labeled from the day he enters the earth -- Down syndrome doesn't by definition qualify Lucas for services, but instead, he has to show delays in cognition, speech, etc. and when it comes to getting a Medicaid Waiver (to cover medical expenses, therapies, and equipment for kids with disabilities), he'll probably be denied by the state of Florida and even if he does get on the list -- right now, it's a 7-9 year wait. Navigating the waters is overwhelming and it leads me to think, what happens to kids whose parents don't know any better and aren't the proactive, "squeeky-wheel" types? Sadly, they get lost in the system. Lucky for Lucas, he came to the right place.

1 comment:

Alex Bana said...

Why was the workshop such an eye opener? Was it because they were preparing you for battle or because it was so thorough. I didn't understand who presents this workshop from what you wrote.

I thought that all kids with additional needs like this got services automatically. How and when are they going to assess any deficits ? And how the hell does it take 7 to 9 years???????

I'm shocked.

But I am happy to hear that Lucas doesn't have to undergo any procedures for now. That's good news.