Wednesday, May 27, 2009

Lucas at 31 Months

It's amazing how time flies...I've been noodling the idea of providing monthly updates on Lucas' developmental progress -- both as a means to chronicle his development for future reference, and so you can share in his growth too. I got the kick in the pants I needed when I visited Bridget's Light and saw her mom has been doing this on a monthly basis since she was wee little; I figured it's time for me to get with it too. So here's Lucas at 31 months.

Lucas is weighing 30 lbs. and stands 36 inches tall -- he's at the 50th percentile in both height and weight on the typically developing chart which is good news for him (I've been telling him, the only thing that will encourage any height will be the fact that Daddy is 6'0 -- I sure am not any help in that department).

Lucas is becoming a chatterbox -- he has approximately 40-50 spoken words, and many, many more word approximations -- he's trying to repeat many of the things we're saying, including 2 and 3 word phrases (approximations). He loves music and likes to sing along to nursery rhymes during circle time at school, he enjoys doing the actions and "singing" to "Pat-a-Cake" and other favorite tunes.

Lucas is counting from 2-5 (we have to start with "one" and encourage him to count).  He especially likes counting "Five Silly Monkeys" -- we may have a budding actor on our hands since he likes to act out the "monkey fell down and bumped his head".  When you ask him how many Goldfish (favorite snack) he wants, he'll tell you either "two" or "five".  He loves animal sounds and can say "cow" and "pig" and make their respective animal sounds; he also does sheep, snake, horse, and monkey. 

Lucas loves reading books -- we're going to start him on a reading program from Down Syndrome Education International in the UK -- kids with DS are visual learners and he's going to pick up sight reading pretty quickly which will help with his budding speech and vocabulary. 

Every day on countless occasions he's signing and asking for "Tee" (TV) and climbing the couch to get to the remote controls which he's trying to figure out how to use. Although he enjoys "Mickey's Playhouse" and "Handy Manny" his favorite DVDs are "Signing Time" where he's picked up approximately 140-150 ASL signed words.

Lucas recognizes many body parts including hands, feet, toes, knees, head, face, mouth, eyes, nose, ears, tummy, pee-pee.

Lucas washes his hands and face, and brushes his teeth every morning and night (sometimes with resistance).

Lucas is feeding himself with a spoon and fork.  Every morning he goes to the fridge, asking for help opening it so he can scour it and pick out yogurt -- his favorite breakfast item.  He opens the yogurt on his own -- we give him some fruit which he likes to add to his bowl.

Lucas is walking everywhere, he climbs stairs with assistance, is starting to run, and is trying to jump -- he bends his knees and often kicks his leg up.  He enjoys playing on his little gym, the swing is a big hit, and he gets positioned on the slide so when we say "ready, set", he yells "go" and shoots down.  He likes "driving" his Jeep 4-wheeler. We're working on kicking too.

Lucas enjoys playing with Playdoh, bubbles (although he blows bubbles out his nose -- he's got blowing his nose mastered; it's blowing out his mouth that's still a challenge).  He's recently discovered building with mega blocks and says "choo choo" as he pushes trains.

Lucas likes going to school, and playing with his friends Cecilia "Cece", Max, and Luca.  He says hello and good-bye to many people when we're out -- this kid is friendly!

Lucas is helping more and more to put on and take off his clothes.  He can take off his shorts and pants (as long as we undo the zipper), socks, and shoes.

Lucas enjoys putting together puzzles and "catching" fish with a magnetic fishing pole. He also likes pretend play -- putting Handy Manny to sleep, feeding him, and cooking for him -- he's got a new kitchen he's experimenting in, just like Daddy.

Lucas is now wearing pull-ups exclusively and tells us "pee pee" so we're spending a lot of time with him sitting on the potty and singing silly songs -- he's had a couple of successes at home and at school.  Any suggestions here would be GREATLY appreciated.

He's getting to be more fun by the day, and loves to learn new things.

Tuesday, May 19, 2009

Hope Haven

On Monday, we visited Hope Haven's Down Syndrome Center in Jacksonville, FL. We first went to Hope Haven when Lucas was one and this was our third visit. The center is the only Down syndrome clinic in Florida and provides kids with DS comprehensive speech, occupational, and physical therapy assessments as well as an educational consultation -- all for a mere $85 (this eval usually costs thousands, but is underwritten by a generous grant).

Hope Haven has a wonderful, knowledgeable staff -- on Monday, Lucas was the first patient seen in their brand new 15,000+ square foot therapy facility which is fabulous. Unfortunately, Lucas was too tired to show off many of his new tricks, although everyone got a healthy dose of "no" from our little man. We were frustrated, but after all, he is 2 1/2 in full throttle. We did get many great tips and strategies for things we need to work on, including potty training, as well as great encouragement about how well Lucas is developing.

Below is sleepyhead with Daddy and the center's director, Laura Watts, a trailblazer and dedicated DS advocate who has a 20-year-old son with DS. We stopped overnight in Daytona Beach and St. Augustine on our way up so I'm including photos and video from our time there too.

Thursday, May 14, 2009


NO SURGERY!!!!!  As a matter of fact, the cardiologist said Lucas may NEVER need surgery to correct his ASD.  The recommendation is to follow him, indefinitely, to monitor the defect.  I can't express how I feel right now...mostly numb because after planning for this surgery for more than a year, I just can't quite wrap my head around the fact that it's NOT happening and may never happen.  

A big fat "THANK YOU" and shout out to ALL the wonderful people who kept us in their prayers, especially Barbara and her tribe of "prayer warriors" who dilligently prayed on Lucas' behalf -- we are feeling so very blessed right now.

Wednesday, May 13, 2009

Oh No She Didn't...

After trying to reach Lucas' cardiologist since Monday, Tom finally tracked her down today -- she was very apologetic about not getting back to us but promised she would call tonight since the cardiology conference at Children's Hospital was this afternoon...she didn't call. We paged her twice and finally at about 10:00 PM, her associate called. He too was apologetic and told us there was probably nothing to report yet...I don't care! She said she would call and give us an answer...earlier, she said she was favoring a "wait and see" approach as opposed to moving forward with surgery and that she was going to try to "convince" the other docs to agree. We're on pins and needles here waiting to know which way they went and what things we need to be considering. We will undoubtedly have resolution tomorrow...the waiting is killing us!

I do have some exciting good news...Lucas went ON THE POTTY for the first time tonight...TWICE! Only people with kids can appreciate what a freaking big deal this is...and my how kids love the praise...we were clapping and was a riot! Hmmmmm....maybe he was trying to make up for the disappointment of his cardiologist?

Tuesday, May 12, 2009

Update on OHS: Sedated Echo

For those who don't know, Lucas is scheduled for open heart surgery in two weeks to repair an atrial septum defect (ASD) -- a whole between the upper chambers of his heart. We've known about this for many months now and the surgery has been scheduled since December. However, during his last cardiologist's appointment in March, she performed an echocardiogram and confessed she was now hesitant to recommend surgery because his ASD is so tiny -- 2 to 3 mm. So she ordered a sedated echo to thoroughly check out the ASD and bring Lucas' case to Miami Children's Hospital conference of cardiologists and cardiac surgeons to determine how to best proceed.

That brings us to this morning...we got Lucas to Children's by 7 AM to prep for his sedated echo. It was fairly uneventful -- they gave him chloral hydrate to put him under (no fun holding him down while the nurse s-l-o-w-l-y administered the oral med), hooked him up to watch his vitals, and the tech began the 45-minute procedure. The room was dimly lit and nearly silent, except for the beep of Lucas' heart monitor. Watching him lay in a hospital room, fully under, hooked up to a few wires was a bit more than I could handle...I had to fight back tears several times as I struggled to push thoughts of Lucas on an operating table out of my mind. We've been told repeatedly that even IF he does need surgery, it is relatively routine and of the least complicated open heart surgeries...and yet, I'm paralyzed every time I hear myself say the words [open heart surgery] out loud so I use the acronym whenever possible, somehow in my crazy head, it doesn't sound as severe.

Anyway, Lucas was released late this morning and slept most of the way home. He was then up for about two hours before drifting off again just a few minutes ago. They warned us at the hospital to keep a close eye on him when he's up and around because he'll probably be somewhat loopy...and indeed he was...totally acting like a drunk 2-year-old -- if I wasn't busy trying to keep him from breaking open his lip, I'd be laughing.

Alas, the conference of cardiologists is at Children's tomorrow at 3 PM and Lucas' case will be reviewed. His cardiologist is due to call by Thursday with their consensus -- to surgery or not to surgery, that is the question.

Please keep Lucas in your thoughts and prayers while we wait. I think I need a cocktail!

Monday, May 11, 2009

St. Louis Expedition

Tom and Lucas were in St. Louis last week. Unfortunately, it wasn't under better circumstances -- Tom's beloved grandfather, Tom, is very ill, and now on hospice. It was important for Tom to visit with grandpa one last time. Tom's mom is from St. Louis so he has wonderful family there, cousins Denise and Alysa are pictured below. Tom and Lucas also visited with our nephews, Brendan and Kellen, and Tom's sister, Robin; Tayler made it in from Seattle just in time to squeeze in a few minutes at the airport with her dad and Lucas. The last shot is Lucas signing "snake" with grandpa Kenny (Tom's dad) reciprocating -- or are they concocting a Harry Potter type spell?

Sunday, May 10, 2009

Happy Mother's Day

Today, I was woken up by the sound of Lucas' little feet on our wooden floor, making his way into our room. He smiled at me and immediately asked for his favorite food, yogurt. It was a good way to start Mother's Day. Later in the morning, Lucas enjoyed playing in his new sandbox and running around the back yard. We went for brunch at Tom's place, and were joined by my sister and my niece, Kristine. It was such a beautiful day, we headed to the beach in the late afternoon -- I'm always complaining about the beaches in Miami which are littered and wasn't much of an exception, but we managed a nice spot near the water and Lucas spent most of his time dodging the waves and laughing...I was loving the moment. Tom cooked a delicious pasta bolognese and we're getting ready to watch a movie...all in all, a most excellent day.

Saturday, May 9, 2009

Jennifer's Journey

Those who read my blog will remember my friend, Jennifer, and her son, Avery, who had open heart surgery for an ASD (just like Lucas may do in a few weeks). Jennifer and her family were recently featured in this lovely video in The Missoulian. Jennifer discusses her book, Roadmap to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome -- which I devoured with much interest since I saw myself, my child, and our lives in nearly every page of her courageous journey. Uplifting, honest, confronting, comforting, and sometimes even heartbreaking, the story is about Jennifer's first two years as the mother of premature fraternal twins, Avery and Bennett -- like Lucas, Avery has Down syndrome. Lucas recently pulled it off my bookshelf -- he studied the cover for a long while as if though he knew these right he was.

Tuesday, May 5, 2009

Happy Homecoming

I was born in the small town of Guantanamo, Cuba. Long before the town became known for the notorious prison, my mom's family settled from Spain. My dad hails from the other tip of the island, from a teeny tiny town called Keebayracha. Their lives intersected in Havana and things happened very quickly -- they fell in love, my mom got pregnant, and my dad received an exit Visa for America...within a week, our futures were sealed and forever entwined...they married and my dad was off to the land of freedom and opportunity. My mom returned to Guantanamo to await my birth and plan their reunion.

It wasn't until shortly before my 2nd birthday, days before Christmas of '68, that my mom and I entered the States on political asylum -- it was then I finally met my father. In the years following, like most children of Cuban exiles, my parents taught me to love my homeland from a distance -- its beauty, splendor, and the wonder of a time gone by.

In the summer of 2001, I returned to the motherland to experience the country and people for myself, and to see what all the commotion was was equally magical, eyeopening, inspiring, and heartbreaking. I met my father's siblings, their children, and their children's children. They were warm and welcoming; talking quickly, loudly over each other in our unique oh-so-Cuban style; they shared their lives and their stories in an attempt to compress 30+ years of life into a mere 7 days.

I saw my beloved country through their eyes, their struggles, their pain. I realized I could be one of them -- my parents chose a different path for an attempt at a better life. Who's to say whose life is better? What I know for sure is that I am "such" an American...and I am grateful to this country for taking me in. My ideals, my view of the world, even the way I carry myself and speak...nearly everything about me has been shaped by my experiences as an American. And yet, the Cuban in me is alive and kicking, and utterly undeniable. Marrying these two cultures is one of the best things to ever happen to me.

When I returned chock full of my own stories and with newfound perspective, I begged and pleaded with my parents to visit for now, it had been 35 years since my dad's exodus. After my mom's passing in February '06, my dad couldn't use her illness as an excuse anymore and I was at it again. It was a constant point of contention between us -- I was convinced dad would first be diagnosed with some horrific form of cancer or have a stroke in the middle of the night before this life-changing homecoming came to pass.

Because of the significant hardships of living under a communist dictatorship, my dad was adamant about returning to visit his family as a pseudo Mr. Moneybags to dole out everything from medicine, to undergarments, to food, to cold hard cash -- he would return only if he could be a hero in their eyes, and not just some ex-patriot. I was incredulous dad wouldn't go when things had finally eased up enough to allow some travel to visit family -- it had been more than 40 years since he'd seen his 2 brothers and one sister...a lifetime, really.

But my persistence was to pay off. This past year, my dad was awarded a very modest settlement as part of a class action lawsuit against the tobacco industry for my mom's death from emphysema and chronic obstructive pulmonary disease. When his check arrived, I urged and pleaded with him to use the funds to go to Cuba. Much to my surprise, my 75 year old father who lives off social security started the long arduous process of getting a Visa, a passport, and other nonsense to travel to what seems like the end of the universe, but is quite literally, little more than 100 miles away.

All of a sudden, he had his passport in hand and was raring to go...he purchased the first ticket available which had him leaving in a little more than a week. He was a nervous wreck -- we talked to family, we exchanged emails with information about their needs, their clothing sizes, etc., we shopped and shopped and shopped...we packed and weighed his bag until the wee hours of the night the day before his flight -- all of us incredulous that this was finally, truly happening!

On April 23, my father set foot in Havana for the first time in nearly 43 years. He was welcomed by my favorite uncle, Jose Antonio, a spunky little 80 year old man, and my dear, beloved cousin, Jose Alberto (who got me drunk off Cuba libres and danced with me at Hemingway's "El Papa" nightclub in Havana). The rest is history. Dad was reunited with his three siblings and a huge extended family. Dad has been recalling the experience in pieces, and shys away anytime he gets teary eyed which is often. My guess is the experience was nearly more than he could handle. But, he is better because of it...and now both he and I can die a happy death with one huge dream fulfilled. By the way, he's already making plans for his next visit.

Below are just a few pics of his trip. The first is Havana Harbour, the next is dad with Jose Antonio and his son, Alberto. Next, dad is pictured with his brothers, Jose Antonio on his left and Cervando on his right. The last is of dad with Jose Antonio's family.

Monday, May 4, 2009

SideBar: Tom's New Tat

Tom had what I called an early '90's "Guns 'N Roses" tattoo (wouldn't you agree?) on his chest since his "band days" -- I was never a fan (as those of you who've spent any time with me probably know). In the past year, he started seriously talking about covering it up and finally decided on a design. He went to a well-known tattoo artist named Dicky at Tattoos By Lou who drew Tom's vision.

An enthusiast of Asian art/culture, Tom chose a longevity turtle as the primary focal point which symbolizes strength, endurance, and wisdom -- the turtle also represents "family" in Polynesian cultures. Two other key elements also were incorporated -- The lotus represents the struggle of life since the lotus begins in muck underwater and drifts to the surface to blossom into a beautiful flower; Tom's lotus also is a tribute to our daughter, Tayler. The lotus is often seen with a dragonfly which symbolizes free spirit, enlightment, and light itself -- the dragonfly perched on Tom's shoulder is a tribute to Lucas which means "bringer of light" -- as he's done to all our lives. Here are the before, during, and after shots. The green moss on the turtle was used to cover up his old tattoo. Don't let Tom's smile fool you, it took nearly six hours during two sessions and lots of blood to produce the finished piece. If you look closely you can see Tom is still swollen and bruised. Whatya think?