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