Tuesday, October 14, 2014

31 for 21: Oct. 10 - 14

October 10

Sofia doing math homework (VIDEO)

October 11: Down Syndrome Buddy Walk

Tomorrow is the Buddy Walk! Such a fun event. It's not too late to join us, too!

However, I'm completely tapped out of ideas tonight, so I'm just copying this from the Mass Down Syndrome Congress (MDSC) website:

The MDSC Buddy Walk® Program gives individuals, schools, community groups, and local businesses across the state an opportunity to get involved in fundraising campaigns and events year-round, all intended to promote the acceptance and inclusion of people with Down syndrome.
The statewide campaign is anchored by our signature Buddy Walk & Family Festival. It also includes major and minor events throughout Massachusetts, such as Buddy Walk by the Sea on Cape Cod, the Buddy Walk & Harvest Fair in Central Massachusetts, a number of school fundraisers, Buddy Bucks Store campaigns, and other fundraisers endorsed by the MDSC.

This year’s theme “Champions!” is based on the Boston Strong mentality of people coming together to overcome challenges and the positive sense of community pride that has developed as a result. We’ll be able to highlight the true Champions of the Down syndrome movement here in Massachusetts and demonstrate the resilience of our community and how we all pull together to ensure that people with Down syndrome everywhere have opportunities to lead fulfilling lives.


The Buddy Walk is an advocacy initiative launched in 1995 by The National Down Syndrome Society. It serves as a vehicle to generate significant awareness and understanding of Down syndrome nationally, while simultaneously raising critical funds to support local programs and services offered by The MDSC. As a proud affiliate of The NDSS, a portion of all proceeds from Buddy Walk campaigns go to support national advocacy initiatives aimed at improving the quality of life of individuals with Down syndrome.

October 12

No major post today for Down Syndrome Awareness Month. I'll let the photos speak for themselves - the Buddy Walk was FABULOUS! Miss Sofia was in a major grumpy mood the whole time, except when she got to see Tinkerbell. We are SO tired now!

Sofia with Arlie, Kendra and Kathy

Micah and David, looking cool


Sofia, Arlie, and Tinkerbell!

Blissing out in the sensory box

Ready to walk

Arlie, SamB and Victoria

Taking a call

Me and my girl

October 13: Being Herself

Sofia is all about being Sofia. Even when she is Princess Sofia - or Else (from Frozen) or Rapunzel (from Tangled) or Tiana (From the Princess & The Frog) - she is still Sofia. Her Sofia-ness is awesome.

She is never afraid to be herself.

She'll stop to do "yoga" or "exercise" in the middle of... just about everywhere.

She ran to join another family tossing around a football yesterday before the Buddy Walk. Just joined right in (and yelled "Leave 'Lone, Mom!").

For the past few months, she has been telling us that when she turns 10 (in February) she will get married. When I ask who she will marry, the answer is, "Sofia." Of course. Who else would be deserving of such awesomeness?

I'm not a shy person. (I know, news flash!). But my daughter's lack of shyness is breathtaking. She is so proud of herself. So bold. So brave.

I watch her, and I am ever amazed. And a teensy bit jealous.


October 14: Endocrinology

People with Down syndrome are more prone to thyroid issues. So we monitor Sofia's thyroid numbers regularly. Once, her numbers got closer to the "needing treatment" range, but then they went back to normal. Been fine ever since.

So we have been very lucky with that. But she still needs to have a blood draw every 4-6 months.
Blood draws - or as Sofia calls it, "Bloody Arm" - are not fun for kids. They are less fun for the grown-ups involved.

It generally takes at least three adults to hold her steady for a blood draw. She's gotten too big for my lap (which is a shame, since the blood draw chair also has that lovely built-in "arm"). So now she lays down on the bed, and I hold her upper body, non-draw arm, and her legs. A lab tech holds the arm that's being worked on. And another tech draws the blood.

The lab staff at Children's in Waltham is fabulous. Boston, not so much. They often have to call in a few extras.

When we take the boys for blood work, Sofia makes a big point of holding har arm tight behind her back and saying "No Bloody Arm" over and over. And moving well out of range.