Monday, March 24, 2008

Happy Easter!

As the wife of a chef, I lose my husband on most if not all holidays, and Easter is no exception. Tom was at work early Sunday morning to make quiches, vegetable flans, tiny filets, langostinos with mango chutney, etc. The good news is we always have somewhere to celebrate. So, off we went to the Diplomat to enjoy all the tasty foods Tom had been preparing since early morning. I swear, Lucas has the heartiest appetite of any young child you've ever met! He had a taste of nearly everything and was a big fan of the quiche. Here he is with his first Easter basket (thanks, Titi -- Tia Susie) and a few pictures of us after brunch at the Diplomat.

Friday, March 21, 2008

World Down Syndrome Day

It’s 3-21, and in honor of the 3rd chromosome at the 21st pair, it's World Down Syndrome Day. I'll leave you with this inspiring piece. Enjoy.

Just Believe...

Wednesday, March 19, 2008

Happy Birthday to ME!

I had a fantastic, low-key birthday on Sunday and here are a few photos of the family from this past weekend -- we celebrated with a trip to the Seaquarium and tasty Mexican food.

Lucas and Roscoe both got trimmed recently -- it's the last time I trust Tom to take Roscoe for grooming -- he's all head now, poor baby...luckily, the hair grows back.

Lucas "enjoying" his first frozen lemonade AKA sour brain freeze (thanks Daddy)!

Friday, March 14, 2008

Bathroom Mischief

Here are a couple of short videos of Lucas -- he made his way to the bathroom and was getting into things with a little help from his partner in crime, Roscoe -- one of Lucas' favorite things to do now it to find things and throw them into the tub. Look for Lucas signing "daddy" and pulling to stand in the videos. He's starting to cruise and now has about 6-7 signs he's using consistently; we're having fun introducing new signs -- he's really getting to be a little character.

Sunday, March 9, 2008

Ambassador Against Fear

I just finished reading a column in the Boston Globe by Beverly Beckham who has a granddaughter with Down sydrome. She points out that Lucy may be the only child with Down syndrome a person ever meets, which can obviously be true for Lucas too. Living in our little world of therapies, doctors appointments, and everything else that comes with his diagnosis, I lose sight of the incredible opportunity Lucas has to change opinions and to dispel myths about Down syndrome. We may not be royalty, but unbeknownst to him our little bean has been entrusted with a noble cause.

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.