Sicky Bean

Poor little bean...he was in the ER last Sunday and had a repeat performance this past Sunday for the same thing -- croop. He gets this horrible sounding "bark" like a seal and has trouble breathing...it's really hard to watch. Once he gets to the hospital, he's treated with a shot of epinephrine and an albuterol nebulizer and he's good to go (after a few hours of observation). In the past week, Lucas was at the pediatrician twice and yesterday ALSO was diagnosed with strep throat...ugh! Note to those with small kids: the pediatrician told us the steroids he is administered for the croop lower his immune system and make him more prone to strep and other infections. Tom and I (with great help from my sister) have been in and out of work over the last week plus -- Lucas has been on antibiotics since yesterday so hopefully he'll be ready to get back to his routine (school) on Thursday. Oh, I almost forgot...Tom, Lucas, and I all had a stomach virus last week too...Never a dull moment, I tell ya...

King of Know

We are beyond thrilled Lucas is finding his voice. Every time I hear his sweet, soft voice, my heart sings. According to Libby Kumin (renowned speech pathologist and expert on speech development in kids with DS), like most children, kids with Down syndrome usually develop receptive language (understanding) much sooner than expressive language (saying) skills. I still remember my early research on the topic and the first time I read kids with DS often don't acquire 3-word phrases until kindergarten age, or sometimes older. I freaked out.

I immediately called my dear friend, Kerra, whose now 4-year-old daughter Krysta spoke in 2-3 word phrases at two. Kerra assured me not all kids with DS speak at a much later time, and as a result, we promised ourselves we'd do everything possible to give Lucas the tools he'd need to communicate with us as soon as he was willing and able to. We enrolled him in weekly private speech therapy, in addition to two 30-minute speech sessions provided at school. We've worked with him at home, carrying over the strategies taught to us by his loving and dedicated therapists -- Angelique, Mariel, and Colleen.

This past week, Lucas' speech has been blossoming...his favorite word now is "no" -- sometimes said softly, coyly, and other times said with great passion and decisiveness. His therapist Mariel taught him to say "I" and sign "want" which he picked up immediately, and is using nearly every moment of every day to get his way. We're now arguing because the boy knows what he wants, when he wants it. I will post video soon so you can see for yourself.

I wish I knew then what I know now...that, my friends, I'm certain will become my anthem on this unexpected journey.

French Chateau or Cuban Eatery?

For anyone whose spent any time in Miami, you know Versailles -- its a landmark of sorts located right on Calle Ocho (8th Street) in the heart of Miami and one of the most densely populated Cuban exile neighborhoods a few blocks from Little Havana. You can easily mistaken this Versailles for the authentic Versailles French Chateau with its gaudy chandeliers and floor to ceiling mirrors with gold leaf...ah, but the trip to this Versailles offers Cuban food and LOTS of it so it's not a place for those watching their waistline.

Serving all the standards for breakfast (cafe con leche y huevos revueltos), lunch (media noche y batido de mamey), and dinner (vaca frita o lechon asado con moros y maduros) and open around the clock. You can even get a "cafecito" on the run at the walk-up window and "pastelitos" (Cuban pasteries, usually with cream cheese, guava, coco, etc.) at the Versailles Cafe adjacent to the restaurant. It's something else. We took Jenni and Rob for Rob's first experience. Check out Lucas making eyes at the pastelitos. Oh and don't forget the mojitos...

Some of Lucas' Many Fans

We've been lucky to enjoy visits recently with some great friends.  The Glass family was visiting from Raleigh, NC -- Lisa and Glenn's boys who range in age from 4 to 13 were all so good with Lucas.  At one point, Lisa volunteered to give Lucas a bath and before we knew it, EJ and Evan were in the bath too.  Lucas was having a ball as you'll see for yourself.  

We went to a birthday party for our family/friends' daughter Melanie where Lucas enjoyed lots of quality time in and out of the bounce house with "Tio Jorge" -- Lucas' godfather's brother and his lovely wife, Karen.  Right now, my best friend, Jenni, and her hubbie, Rob, are in town from Nashville -- Tom even took an extra day off for a man-date poolside with Rob.  Although Lucas misses his dear cousins (Jenni/Rob's daughters), Emma and Anabel, we're planning to see them this summer in Panama City Beach.  I am incredibly appreciative of our time with everyone eating, drinking, laughing, and catching up on life...

Don't Judge a Book by its Cover

Has anyone on the planet NOT seen Susan Boyle sing her heart out on "Britain's Got Talent" -- if you haven't do it NOW. She sings the very difficult, very moving "I dreamed a dream" from Les Miserables. I just checked and her video has garnered more than 22 million hits on YouTube...that's right MILLION. I picked up the piece below from Patricia Bauer's blog which I visit frequently...bottom line here is not to judge a book by its cover,; something Lucas and all people with disabilities will struggle with their entire lives. Bravo, Susan!

Susan Boyle says disabilities shaped her life

April 16th, 2009

International singing sensation

From the [UK] Mirror, [UK] Times, CBS Newsand elsewhere:

By now, just about everybody has heard about Susan Boyle, the plain Scottish spinster whose extraordinary singing voice dumfounded the judges of a British talent show this week. Videos of her thrilling performance on “Britain’s Got Talent” have gotten more than 18 million views on Youtube, and she is already reportedly in talks with a record label.

But what many may not know is that Boyle, an unemployed church worker who cared for her elderly mother until her death two years ago, has a lifelong history of disability. Boyle says she has learning disabilities, the result of oxygen deprivation at birth, and was bullied in school because she was slow and had frizzy hair.

“The ones who made fun of me are now nice to me,” she told CBS News, “so I may have won them round.” She said she hopes her arresting debut on the TV talent show will remind people not to judge by appearances.

(Photo from the [UK] Times)

See also: It wasn’t singer Susan Boyle who was ugly on ‘Britain’s Got Talent’ so much as our reaction to her — Tanya Gold in the [UK] Guardian

UPDATE: From Deadine Scotland:

[Boyle] says she hopes the show will highlight her disability too. She said, “I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness — I want to turn my disability into ability.”

A Classic

I know, Lucas will probably hate me someday for this, but I couldn't resist...that's what he gets for going commando on his little jeep.

Happy Easter

This year, Lucas enjoyed his first Easter egg hunt (not really), coloring Easter eggs (again, not really though my niece, Kristine, and I had fun), Easter baskets (not too shabby), and Easter brunch at Daddy's (now, we're talking). Roscoe even got in on the action with a new Easter "duck" toy. Lucas also broke in his new inflatable pool with zebra slide which was a highlight of spring break. Hope everyone enjoyed spring break, Happy Easter, and Happy Passover too!

The Bean Speaks

After our little getaway, Lucas has been extra clingy and demanding lots of attention, especially from daddy. Here are some of the results. Notice Lucas is now using some spoken words, and we're thrilled! I counted the number of signs he's using and he's up around 100, and adding more all the time. Make sure to raise the volume since he's a wee soft spoken. Here's what he can "say" thusfar (he's also using many other word approximations):

• Daddy
• Go
• Mama (doesn't use it nearly as often as "Daddy")
• Titi (what he calls my sister)
• Puppy
• Baby
• Ball
• Stop
• Down
• Done (for "all done" eating, playing, etc.)
• I (signed with "want" and whatever he needs...such as his new favorite, yogurt)
• Hi
• Bye bye
• He uses animal sounds including moo, baa, panting (for dog), *ay (for nay), sss (for snake), and a whole host of made up sounds for rooster, pig, chicken

Happy 5th Anniversary to Us!

Tom and I celebrated our 5th anniversary on April 4th -- it's hard to believe it's been 5 years, but then again, SO much has happened in such a relatively short time. Thanks to something called the recession, we shelved our "big" plans for the Greek Isles cruise in favor of the much-more cost efficient weekend getaway to Hilton Head Island and Savannah. We left Friday night for four nights, three days BEAN FREE! That's right...Lucas stayed behind with Tia Susie ("titi") and lived to tell about it (no really, he had a marvelous time and made out like a bandit since my sister spoils him rotten!).

Anyway, our trip was fabulous and we had an opportunity for some R&R and to reconnect...awwww...isn't that special!? Seriously, although we both had to fight back tears on occasion since this was our first trip anywhere without Lucas, it was really great for "us" and everyone is better for it. Here are just a few pics, including 1) "happy anniversary" desert from Pink Restaurant in Savannah (yummy!), 2) Tom in one of the 22 squares in Savannah's historic district -- lots of Spanish moss everywhere -- 3) us on our anniversary dinner at Sapphire Grill (super yummy!), and 4) my pink toes showing off our lovely poolside/beach-front Westin Hilton Head hotel.