Friday, June 15, 2012

Down Syndrome Clinic

I'm not originally from Massachusetts. I moved here 11 years ago to be near my parents who had relocated from upstate New York while I was studying and working in Colorado. I like to be near family, so I stayed.

And every day since Max was born I am so thankful that I did.

You see, Down syndrome brings with it a host of medical complications, and Boston has amazing medical facilities. One of the coolest medical resources the Down syndrome community in Massachusetts has is the Down Syndrome Clinic at Children's Hospital Boston. (Or rather, Boston Children's Hospital as it was recently rechristened. I know, not very original, but what's in a name?) It's headed up by this magnificent woman, Angela, who has reached near celebrity status among all of us lucky families. To give you an idea of how fantastic and how thorough the program is, here's a play-by-play description of mine and Max's day yesterday.

4:30 am: Wake up, get dressed, and spend extra time on my hair and makeup (gotta look good!). (Yeah, 4:30 is a bit excessive, but that's my normal wake-up time for work, so what's the difference?)

5:30 am: Head to the kitchen to pack breakfast, lunches and snacks for Max and I.

6:00 am: Pack the diaper bag with all the essentials including a few toys and books to keep my boy occupied.

6:20 am: Wake Max. Drink some milk. Have a bath (or rather, splash Mommy and drop all the dripping nesting cups on the floor). Get dressed.

7:10 am: Hop in the car.

9:10 am: Arrive at the hospital's parking garage. It took 2 hours to drive 50 miles.

9:15 am: Check in on the 10th floor in the Developmental Science Center (15 minutes late).

9:20 am: Meet with the dentist. Max HATES the dentist. If you haven't ever taken a toddler to the dentist, this is how you do it. 1) Place toddler on parent's lap, facing parent. 2) Sit, facing dentist (who is also seated), knee to knee. 3)Lay toddler's head in dentist's lap. 4) Allow dentist to poke around in toddler's mouth. 5) Sit helplessly while toddler screams for the duration of the exam.

Outcome: Max has great teeth.

9:45 am: Meet with the nutritionist. Less eventful, but quite informative.

Outcome: Continue to share our meals with Max, hoping he'll eventually like them.

10:00 am: Meet with the physical therapist. I loved this one. After two hours in his car seat, and another being held by me, Max was thrilled to move around. He literally did laps (on his belly) across the room for ten minutes to burn off some of that energy and frustration. Then another 10 minutes playing peek-a-boo behind the hospital curtain. And finally, a very well executed display of his formidable standing and cruising skills. 

Outcome: PT believes Max will be walking soon. (How soon is soon?)

45 minuted break in the waiting room for crawling, eating, drinking and mingling with the several other families there. Ava's a beautiful 2-year-old with platinum hair. Her mom is creating a database of all of the families in Massachusetts like ours. We are a small community--we have to stick together! Jack, also 2, is quite a climber. He enjoyed showing off his confident walk, and all the words he's practiced with his mom.

There was also a couple (Dad was Todd, but I can't remember mom's name) with a tiny 3-week-old boy named Justin. In addition to his Down syndrome, Justin was born with a complete AV canal defect (congenital heart defect), just like Max. They reminded me so much of Sean and I at Max's birth. Dad, wide-eyed and talkative. Mom, exhausted and overwhelmed. Both of them very much in love with their son. I gave them my phone number. Sometimes it's nice to talk to someone who has already gone through it. I hope they call.

11:30 am: See the pediatrician. Dr. Davidson is wonderful. She's gentle, soft-spoken, kind, and above all, very knowledgeable. For most of the visit we discussed Max's health and his care. She answered a number of questions I've had, and showed me some terrific resources online. I'll share those another day.

Outcome: Max looks great. Keep doing what we're doing.

12:30 am: Head back to the car. Immediately fall asleep.

First, the binky falls out of the mouth.

Next, a mild head tilt.
Finally, complete head slump.
 90 minutes through heavy traffic and we finally make it home. I don't have the heart to wake him so we drive for another 30 minutes until Max's eyelids begin to flutter.

Our next visit to the Down Syndrome Clinic is on February 7, 2013. Can't wait!

(If you live in or near Massachusetts and would like to contact the Down Syndrome Clinic, let me know. I'll put you in touch.)


1 comment:

  1. My favorite detail of your whole day is the part where you drive an extra 30 minutes because you don't have the heart to wake him. Thanks for sharing!