World Down Syndrome Day

March 21 (March 21=3 copies of the 21st chromosome) is World Down Syndrome Day and we are celebrating our beautiful son and all of the wonderful people we've met on our journey.

Lucas is nearly 2 1/2 and is growing and learning more each day...he is in an early intervention program at the University of Miami's Debbie School -- although I have many gripes about Miami, the one irrefutable thing is that Dade County has the ONLY center-based early intervention program in the country, and for that, we have been truly blessed. At the Debbie School, Lucas is one of the most popular and beloved kids -- his therapists are constantly gushing about him and we are so very proud of our inquisitive, loving, funny young son. Lucas is now enjoying puzzles, dancing, the pool, and playing with friends, he also still loves "reading" as he makes us read several books each night. His signing vocabulary continues to grow...probably about 80 words including just about every farm and zoo animal...and he's using about 12-20 spoken words.

Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Individuals with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Those with Down syndrome have feelings just like everyone else in the population and experience the full range of emotions. They respond to positive expressions of friendship and are hurt and upset by inconsiderate behavior. People with Down syndrome date, socialize, form ongoing relationships and marry. The future is so very bright!

For more information about Down syndrome, please visit:

The National Down Syndrome Congress: http://www.ndsccenter.org
The National Down Syndrome Society: http://www.ndss.org
World Down Syndrome Day: http://www.worlddownsyndromeday.org/
Spread the Word to End the Word: http://www.specialolympics.org/03-31-09_Spread_the_Word.aspx

Happy Birthday to ME!

I had a really great birthday, especially since I got to spend all of it with my wonderful husband, and most of it with our little bean. My phone was ringing off the hook and my mailbox filled with emails from well wishers -- although it kinda sucks getting yet another year older (better than the alternative), it certainly makes you feel better to feel loved.

As for my day, after Lucas' visit to the cardiologist -- more on that tomorrow -- my sister met us for lunch and then she babysat Lucas while we went to a movie ("The Watchmen" -- not exactly a date movie) and then enjoyed a fabulous dinner out at the ever-popular Joe's Stone Crab on South Beach. The weather was perfect -- sunny and toasty. Tom says he thinks I had too much iodine (please don't let me be developing an allergy to shell fish!) because I kinda broke out in hives tonight, I hope benadryl does the trick. After dinner my sister hosted us for cake and ice cream...how sweet she was to switch the numbers around on my cake (look for the "24" below)...Lucas liked the singing, not to mention, the cake!

Avery's Surgery a Success

Avery is doing well and is out of the CICU -- HOORAY! If you're interested in learning more, here's the update in Jennifer's own words. Thank you for your thoughts and prayers.

Prayers for Avery

Tomorrow, six-year-old Avery undergoes open heart surgery to repair an atrial septum defect -- a hole between the upper chambers of his heart. Heart defects are incredibly common in kids with Down syndrome, found in about 50% of the population. Avery is the son of my dear friend, Jennifer, who I met online and was lucky enough to spend some time with at the Down syndrome conference in Boston last July. Jennifer is the author of "Roadmap to Holland", chronicling her first two years as Avery's mom -- Avery is a fraternal twin and while he has Down syndrome, Bennett does not. The Groneberg family lives in beautiful Montana and Jennifer is one of the most eloquent writers I've ever had the pleasure to know...finding this amazing community of moms who champion their children's abilities and share the good, the bad, the ugly with one another has been one of the greatest gifts of my personal journey as Lucas' mom.

The family learned at Valentine's that Avery would need surgery to repair the ASD so they're in Seattle at Children's Hospital now. If you're reading this, please take a moment to say a prayer for Avery so he has a successful surgery, all goes exactly as planned, and he's on a quick path to a full recovery. Beyond having son's with DS, Jennifer and I will join the "heart moms" club -- for mom's whose children have had open heart surgery.

MARK YOUR CALENDARS: Lucas is scheduled for open heart surgery to correct an ASD (just like Avery) at Miami Children's Hospital on Friday, June 5th...it seems like an eternity away and yet each day it comes closer and looms bigger. I've been told it's the "easiest" of open heart surgeries to perform, but, hello....it's OPEN HEART SURGERY on a toddler!!! Most of the time, I'm numb to it because I just can't start processing all the angst I have around coming up against another unknown -- like we did with Lucas' diagnosis at birth. We go on Monday, March 16th, for a follow-up echocardiogram and ultrasound to check the teeny tiny hole, which if left uncorrected could lead to pulmonary hypertension.

Our time will come soon enough, so for today, I would be thankful if you'd keep Avery and his family in your thoughts.

Jungle Island Adventure

It was time for more animals -- especially since Lucas can't seem to get enough of his "Signing Time" DVDs featuring zoo and farm animals (thanks, Aunt Robin!) -- so we ventured to Jungle Island on Biscayne Bay. Jungle Island is home to the former "Parrot Jungle" so there are still many exotic macaws, some who've been around since the 1940's and they're a riot...they line two walkways and love to greet passersby and eat right out of your hand.

The favorite encounter was feeding baby kangaroos...hay que lindos! The South African penguins were too cute for words but we didn't get as up-close-and-personal an opportunity with them. And yes, that's Lucas kissing the kangaroo...

Who Needs Lions, Tigers & Bears to Have Fun?

While Tom was "working" during his second annual trip to the South Beach Wine & Food Festival representing his restaurant at Le Meridien, Lucas and I set out for the zoo. We went in the late afternoon to avoid crowds and in the hopes of finding lots of animals out enjoying the cool South Florida February breeze.

We ventured to Miami Metro Zoo's new installment, Amazon & Beyond, which is really impressive -- featuring harpy eagles, anacondas, and jaguars. And while the animals were fun (especially the monkeys), Lucas devoted most of his time to the new fountain. While at first he was skirting around the edges, he ended up soaked and loving it. I hauled him off nearly kicking and screaming...dried him off with my sweater, got him into a dry t-shirt and diaper, and offered a cheerios snack and we were all good.

The experience was just as much fun for him as it was for me to watch, living vicariously through him -- I smiled remembering how my mom would NEVER let me play in the cold water because I would undoubtedly catch pneumonia. I hope she was smiling down watching Lucas too...who, astonishingly, as of now does not have pneumonia!

Mark Your Calendars: 3-31-09 Global Ban the "R" Word Day

March 31st, during the World Special Olympics, will mark the first Global Ban the "R" Word Day. I have made it a priority to stop everyone who I hear using it -- case by case, it has become easier to do and has brought enlightment and understanding to those who throw the word around unknowingly, and has brought me personal satisfaction...doing my own little bit to make the world a more accepting and loving place for Lucas and others like him.

The majority of people who use it, don't even know what they're really saying since it's become such a part of today's vocabulary, and the funny-sad thing is, they never see the connection between their words and Lucas.

Won't you please join us in never using that word and letting others who do, know that it is insulting and hurtful. Thank you!

I'm off my soap box for now...

Looks Who's a Big Boy...

So, we graduated Lucas to a big-boy bed. He was giving us a hard time getting to bed most nights so bedtime had turned into a nightly battle of the wills. Now, Lucas has a routine which includes milk, reading a book (or 5!), and snuggling up before drifting off to sleep. Here he is the first time in his new digs (thanks to Ikea, it was cost-effective, cute, and quick to set up).

Happy Valentine's Day!

Lucas made me this big card (thanks too, daddy!) and wanted to share it and Lucas with you today...Happy Valentine's Day.

Ahoy

Before the new year, our dear friends, Kerra and Julio, took us out on their boat on one of the most spectacular days in Miami...the water was flat as a pancake, there was the slightest of tropical breezes, and the sun was bright and shining...we couldn't have asked for a more picture-perfect day. Krysta is pictured with Lucas.