Sun, Sand, and Swimming!

Despite the daily weather forecasts of "clouds moving in with possible showers", this weekend was flawless.  Every day brought loads of sunshine, and near-perfect temperatures.  Something about 3-day weekends just makes everything a little more relaxing, and a little more fun!

We took advantage of the hot weather on Saturday, and ventured out to the beach.  Our intention was to drive to the ocean, but as we realized the lake was half the distance to the coast, we decided to go there instead!  I wasn't sure how Ty would react to swimming this summer, since he hadn't been in the water in a year, but wow did he love it!  As soon as we put our stuff down, he immediately walked down to the water and plopped himself down.  He kept turning around and signing "bath" with a huge smile (one of his favorite things!), because apparently to a two year old, a body of water is essentially a super-sized bath tub!  After assessing the situation, he decided it was worthwhile, and attempted numerous times to walk deeper and deeper in the water, laughing hysterically at himself.  Daddy took him swimming in the deeper water so he could really let loose (with Daddy's assistance, of course!), and let me tell you, this kid is ready to learn to swim!  That's going to be our summer project in our little backyard pool.  I think we have a future competitive swimmer on our hands!  All in all it was a successful trip, and I'm so proud of my little adventurer!     

Look mom, it's a "bath"!

This is SO much fun!!!

Look at me in the deep end!!!

Done with pictures...

Sunday was even more beautiful than Saturday, and we spent the afternoon at a cookout at Ty's Grandpa's house.  Lucky for the water-bug, the pool was set up, and he spent a while kicking and splashing, and finally lazily floating in circles through the water! 

Monday, our last day of the long weekend, we went to our town's annual Memorial Day parade.  Ty had fun exploring the town common and playing in the grass beforehand.  The actual parade was a different story, though.  Apparently Ty will NOT be in the band when he's older, judging by his reaction to the several bands that marched by in the parade!  I have never seen him climb up my body and squeeze my neck so fast!!  I think his musical talents will be better applied as a break dancer, or at his high school dances.  :-)  He did enjoy waving to the veterans and fire trucks who drove by, though.  I guess it wasn't a total failure!!!

So I guess the countdown to summer is on!!!  3 more weeks!!!

Spring Happenings

I haven't written an update lately, so I figured I'd share the bits and pieces of our spring all in one post!

First of all, I get to write this from my NEW laptop!  I can't even tell you how much easier it is to type with keys that don't stick, a screen that doesn't freeze, and an internet connection that doesn't cut out, forcing me to restart my post all over again.  It's the little things that make life just that much smoother!

In the last week, spring has arrived in full force, including warmer weather and sunny days (on the weekends at least)!  We spent this past weekend lounging around the house, and enjoying our backyard!  Ty had a blast playing in his water table and on his swingset.  I'll tell ya, a water table plus a sandbox makes for some very interesting laundry!  I'm still sweeping up tiny piles of sand that have fallen out of Ty's sandals all over the house!





We also celebrated a small victory in Ty's life...transitioning to a toddler bed!  Originally, we had planned to make the transition to a brand new toddler bed so Ty could pass his crib down to his baby brother.  Honestly though, the idea of a toddler bed with only 18 inches of railing on the side scared me...I had visions of my overly active sleeper flinging himself off of the bed hourly throughout the night!  We decided to convert his existing crib (which it was meant to do) into a toddler bed by removing the front panel and adding a toddler bed guardrail.  This way he can still have his same bed, same bumper, same everything...with a little more freedom.  And boy does he love it!!!  On the first night, he slept like he always does, and popped out of bed at his regular time, knocking on his bedroom door to be let out.  The second night, I found him asleep on the floor next to his bed (though I swear I didn't hear him fall or even wake up for that matter!), which was odd, but still a successful night!  Tonight is our third...let's hope it's as good as the first two!

And I of course can't leave out the other new little boy in my life, "Baby Boy"!  He is now 26 weeks into his journey, and seems to be growing strong and healthy!  At this stage, he is approximately 2 pounds and somewhere from 12-15 inches long.  He can now dream in his sleep, hear everything that's happening on the outside, and he has more tastebuds now than he'll have when he's born!  (I love my daily pregnancy fact calendar!)  Having two baby boys to compare now, I can say that this one is much more active than Ty was!  Where Ty gave me sharp, direct kicks, this little guy seems to be rocking and rolling his entire body the majority of the day (and night)!  Several times a night I am woken up by my entire belly shaking from side to side like a jello mold.  He seems to be very much a night owl, though he does get excited every time I eat!  We're getting excited to meet this little guy in 3 short months!

25 Weeks (my 26 week picture isn't blog-worthy!)

Last but not least, we are walking in the NSTAR Walk for Boston Children's Hospital on Team Down Syndrome in a few weeks.  All of the money we raise is going toward the Down Syndrome Program that Ty attends.  It will be used to fund DS-specific research, provide materials for new parents, host expert speakers on DS-related topics, hire new professionals for the clinic such as an educator, and the list goes on, and on, and on!  I promise, not one penny will be wasted in this program!  We have the privilage to see (and benefit from!) each and every project that is funded through this walk, and it's amazing at what they are able to accomplish from this one fundraiser!  If you haven't seen it, here's Ty's walk page, explaining a little more about why we are walking!  And a HUGE THANK YOU to everyone who has supported us so far!!!

Ty's Walk Page - http://howtohelp.childrenshospital.org/walk/page/MT0169.htm


Well, that just about wraps up life around here!  We have four more weeks left of school until all 3 of us are home together for the summer.  I'm not sure who is more excited...Eric to have a break from work, or Ty to have "dada" around all the time!!!  It'll be a good one for sure!  Stay tuned!

Happy Mother's Day!!!

This weekend I celebrated my third Mother's Day with Ty in my life.  Has it really been that long already?!  I love taking annual "Ty and Mommy" pictures each Mother's Day to mark how Ty has grown, and how our lives have changed.  My favorite part though, is looking at Ty's expression in each picture.  It tells a little story of that day and that time of our lives, and makes me smile.
       

This was my very first Mother's Day.  Ty was barely two months old, and we were still living in Virginia at the time.  This is also my favorite picture of the bunch!  Ty's expression says it all..."put down the camera, feed me, and let me take a nap!!!"  Isn't that how the first few months with a new baby go?!  Ty may not have been happy to pose with me, but that's one proud new Momma!

Last year, we celebrated my second Mother's Day at our new home in New Hampshire.  I distinctly remember taking this picture, too.  For whatever reason, I woke up with Ty last year, and we were being silly in the playroom in our jammies early that morning.  I also notice the toys in the background that we were playing with...stacking rings and a toy phone.  It makes me realize how much he's grown up; those one-year-old toys have been traded in for ipad apps, race cars, and sports equipment.  Where does the time go!?   

And today marks my third Mother's Day with my little man (and 2/3 of my second little guy!)  This year was a little more mellow, though.  As you can see, Ty's eyes are half-swollen with pink-eye, and his nose is running from a week-long cold.  He also got his first little sunburn on his arms today, from the 15 minutes he spent in the backyard!  You can probably imagine the mood he's been all day, and the exhausted parents who have been desperately trying to distract him from being miserable!  I guess that's life parenting a constantly on-the-go two year old, though - trying to keep up with his two-minute attention span, and always keeping his mind busy!  

Next year will be a whole new story!  I'll have one boy in each arm - the proud Momma of two beautiful babes!  I can only imagine where we'll be at that point in time, and how our lives will have changed in just 365 short days. 

Happy Mother's Day to our amazing mothers and grandmother, and all of my wonderful mom-friends, who try so hard to be the best mothers they can be each and every day!      

10 Reasons to Support the DS Program in the NSTAR Walk - #6

#6 - A Community, Within a Community, Within a Community

This post is fitting today.  We just finished up with our monthly Down syndrome playgroup today, and had a blast seeing everyone...as usual!

That's the cool thing about the Down Syndrome Program at Boston Children's...it's a tight-knit community, within the larger Down syndrome community across our country, within the international Down syndrome community that encompasses the millions of people with a little extra something, just like my Ty. 

When we lived in Virginia, we were only a part of that massive, nationwide and international Down syndrome community.  I had found an awesome group of parents in my same boat in an online DS forum (and later met many of them in person), but that was our only connection.  When we moved to New England, we joined the Down Syndrome Program in Boston within months, and were introduced to a much smaller and personal community of families.  Sitting in the waiting room of the clinic is always fun, because you undoubtedly meet someone new, who also has a child with Down syndrome (and sometimes see people you've known for a while, and realize you have appointments on the same day!) 

At our first appointment, Dr. Davidson gave us information about a Down syndrome playgroup in Massachusetts.  We were a little hesitant, because Ty was still too little to "play", so we put it off until he was 11 months old.  After our first playgroup though, we were hooked!  Not only did we go to them monthly, but a friend and I ended up starting a second playgroup here in New Hampshire, which is also held monthly.  Within a matter of months, we were introduced to people...awesome people...who were also raising children with DS who were Ty's age, and best of all, they lived right in our area!  

By being a part of the Down Syndrome Program, we were introduced to people who have become lifelong friends.  See, the clinic isn't just a doctor's office .  It's personal.  Everyone knows you by name, and recognizes the growth in your child.  They care about your well-being, and make sure that you are supported in any way that you need.  Without joining the program we never would have met such awesome kids for Ty to grow with...

Ty's Walk Page - http://howtohelp.childrenshospital.org/walk/page/MT0169.htm

       

10 Reasons to Support the DS Program in the NSTAR Walk - #7

#7  - Being Healthy Means Time For More Important Things

Since the Down Syndrome Clinic team does such a good job of keeping Ty healthy and developing as he should, he has more time to focus on the important things in life...like perfecting his dance skills.

Ty recently discovered reggae...



In case you're wondering how someone acquires such good skills, this is where he practices...

As you can guess, Konu has been playing in my house daily for the past two weeks.  Thank you Down Syndrome Clinic for allowing Ty to have all this time on his hands to focus on the really important things in life!

Ty's Walk Page - http://howtohelp.childrenshospital.org/walk/page/MT0169.htm



10 Reasons to Support the DS Program in the NSTAR Walk - #8

#8  Knowledge is Power

"Back in the day" not a whole heck of a lot was known about Down syndrome.  Children who were born with Ds were often institutionalized, and for those who chose to raise their children, it was an uphill battle for everything from education to medical care.  Today, the opportunities for our kids are endless.  Research on things such as medical issues that commonly affect people with Ds, educational best practices, and strategies for encouraging proper development have opened doors for our children that weren't even visible in the past. 

Boston Children's Hospital has played a hand in this research as well.  Currently, they are conducting three exciting research projects.  The first is a Sleep Apnea Study.  Individuals with Down Syndrome are at a high risk of obstructive sleep apnea, which can cause a wide range of medical and developmental problems if not treated.  To diagnose sleep apnea, all children with Down syndrome are referred for a sleep study, where they are monitored through wires and video while they sleep in the hospital overnight.  The thing about sleep studies though...well, they suck, for lack of a better word!  Children are expected to sleep with 15+ wires glued to their heads, while trying not to get tangled in them...and are expected to complete regular sleep cycles!  Needless to say, parent chaperones don't get a whole lot of sleep either!  So this Sleep Apnea Study is going to try to make these required tests more comfortable and convienent for everyone involved.  Just a reminder of Ty's sleep study last August...



Could you sleep naturally like this?!  Poor kid!



The next exciting research project is called the National Down Syndrome Registry, which Boston is now participating in.  Participants of the clinic can volunteer to join the registry, where medical data of individuals with Down syndrome across the country will be tracked in one place.  Why is this important?  Well, people with Down syndrome tend to have common medical issues...heart defects, sleep apnea, hypothyroidism, hearing loss, etc.  By establishing this registry, common medical conditions affecting our kids can be tracked much more closely, trends can be identified, and interventions can be implemented.  Years ago (not too many years ago), the life expectency of a person with Down syndrome was 30 years old.  Knowing what we know today about these medical conditions, the life expectancy has jumped to 60+ years, and will continue to rise as more is learned.  This registry is a huge step in Down syndrome research.

The thing about research...it comes at a price!  Funding is essential to continued learning about these crucial issues affecting our kids.  A portion of money raised for the Down Syndrome Program is used for this ongoing research, that will undoubtedly touch our kids' lives in profound ways.  The more we know, the more power we have to build bright futures. 

Ty's Walk Page - http://howtohelp.childrenshospital.org/walk/page/MT0169.htm

10 Reasons to Support the DS Program in the NSTAR Walk - #9

#9 - You Won't Find Cuties Like This Anywhere Else

Seriously, the kids who participate in this program are exceptionally adorable.  They're spunky, shy, energetic, and stubborn ; they have incredible determination; they are tougher than the toughest of the tough; they are smart and creative; their smiles demand a smile in return; they are the lights of their parents lives; and they rock 46 chromosomes, plus one exceptional extra!

 

In 2008, the Down Syndrome Program served 192 children.  Last year, that number more than doubled to 413 children, and this year they expect to hit the big 5-0-0 mark!  Having been a part of the program for two years now, I can see why its popularity has spread like wildfire!  I know of one family who travels from upstate New York to participate in the clinic, and of another family who has visited all the way from Ireland to participate.  Not only is Boston Children's Hospital well-respected in New England, but it holds prestige across the United States and across the ocean.  Now that is a reputation to be proud of! 

These are just a few of the kids who you are supporting when you support the Down Syndrome Program.  You are helping to keep them healthy now, and laying the foundations for their successful futures.  Thank you for loving our kids!

Ty's Walk Page - http://howtohelp.childrenshospital.org/walk/page/MT0169.htm  

10 Reasons to Support the DS Program in the NSTAR Walk - #10

#10 - It's Not All About Health

Twice a year we make a trip to Longwood Ave in Boston to visit the Down Syndrome Clinic.  After our appointment, friends and family will undoubtedly ask how our big semi-annual appointment went, followed by the question, "Who exactly do you see at the clinic, again??  What did they tell you about Ty??"  Good questions - hard to answer in a 5 minute conversation!

Let me lay it out for you.  Half an hour before our appointment, we pull into the Children's Hospital parking garage, and rush through the morning traffic on foot to the hospital, because 9 times out of 10 we're late!  We take the "musical stairs" in the lobby (which Ty loves) to the elevators, where we ride to Fegan 10, and are greeted with a big smile by Angela Lombardo, the Down Syndrome Program Coordinator (I'm still not convinced she sleeps with how much she does for everyone, but that's a whole other post!).  After completing general paperwork about Ty's current health, and getting his height and weight measurements, we are ushered down the hall to our first appointment. 

For the sake of a simple explanation, we'll say we see the Developmental Pediatrician first, Dr. Emily Davidson (another superhero of a woman).  A Developmental Pediatrician is basically a pediatrician, plus some.  Not only does she discuss Ty's current medical status and give him an exam, but we discuss his gross motor and language development; she gives pointers on things like potty training and welcoming a new sibling into the house; and she offers a list of resources like reading programs and websites to help support Ty's education.  It is our longest appointment of the day, but the one I most look forward to because I walk away armed with strategies for helping Ty reach his potential.

When our 45 minutes is up, Angela is knocking on the door (because my 101 questions almost always make us go over our alloted time), ready to bring us to our next appointment down the hall.  In the course of two hours we also visit with a physical therapist, speech therapist, nutritionist, and dentist.  The therapists informally evaluate Ty's current progress, and offer strategies for helping him to reach the next step.  These appointments are always fun, because not having seen these particular therapists in 6-8 months, Ty has always made such progress since his last visit, it's a nice reminder at how far he's come, despite where he may fall on the milestone charts.  The nutritionist compiles a list of all of the foods making up Ty's diet, and offer suggestions for helping our insanely picky eater consume a balanced diet.  And finally, the dentist does a quick exam and evaluates for any of the common dental issues that occur among people with Down Syndrome.  2 1/2 hours later, we're done.  Exhausted yet?!

While it's a long day, we always leave the Down Syndrome Clinic armed with a comprehensive knowledge of our son's medical status, developmental progress, and loads of resources to help Ty continue to grow as a well-rounded individual.  

The Down Syndrome Clinic isn't just about health.  It's about praising children's achievements, and setting new goals for the future.  It's about building confident parents, who have the knowledge and resources to help their children reach new heights.  It's about supporting a community of children whose futures are extremely bright.  They work hard, and rely on funds from events such as the NSTAR Walk to continue to provide this support to the families in the program, which is why we believe so strongly in giving back.

If you'd like to support the Down Syndrome Program in the NSTAR Walk, feel free to visit Ty's fundraising page, or the "Team Down Syndrome" page to support another walker.  It doesn't matter who is supported, because it's all going to the same awesome cause.  Thank you!

Ty's Page -  http://howtohelp.childrenshospital.org/walk/page/MT0169.htm   



Our peanut after completing the 7-mile walk last year!