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Wednesday, November 29, 2017

Honor Roll!

Kayla made the Honor Roll!

Academics do not come easily for her, at all, so this was definitely hard-earned. I was not able to be at the ceremony but I heard she was just beaming and so proud when her name was called.

Requirement is 86 and above and she had a couple 85/84 last year so she was soooo close! So proud of her during this first quarter marking period!

Thursday, November 09, 2017

Chess Accomplishments

As I mentioned in this post, Lucas is really enjoying the game of chess and becoming quite a decent player (if I do say so myself!).

A few weeks ago the library chess club had a small tournament among their members and he came in third.

A few weeks after that he participated in the Charleston Fall 2017 Chess Scholastic tournament that was an official US Chess event. There were 21 players in his ratings bracket.

This kid took 2nd place! So proud of him!

There is another tournament this weekend that I wish he could participate in, but he has a soccer game (and he missed a game the weekend he participated in the chess tournament); the joys - or conflicts - of having interests that overlap!


Tuesday, October 31, 2017

Monday, October 30, 2017

Human Trisome Project

The Human Trisome Project is a ground-breaking research initiative into Down syndrome and researching the medical complexities that can accompany having an extra 21st chromosome.

I first heard about the vision for this project at a Global Down Syndrome Foundation medical round table discussion at the NDSC Convention a couple years ago - exciting to see it's up and running now!

The mission of this project is to "...significantly advance our understanding of several major medical conditions and human biology in general, enabling the developmental of novel diagnostic and therapeutic tools to serve not only individuals with Down syndrome, but also the billions worldwide who experience conditions affected by trisomy 21."

This research will be the larges and most comprehensive of its kind helping to answer the questions of why people with Down syndrome are predisposed to diseases like Alzheimer but seem to be protected from some kinds of cancer.

They are currently enrolling anyone between the ages of 6 months to 89 years.

They are enrolling:
- people with Down syndrome
- people who have a family member with Down syndrome
- healthy people who don't have Down syndrome

Basically anybody and everybody can participate in this important research project.

Click here for more information and click here to get involved.

Sunday, October 29, 2017

If I Could Go Back

Remember the online documentary about 5 roommates (4 with Down syndrome and 1 with Williams syndrome) in England called The Specials

Their website was recently relaunched where Seasons 1 and 2 are available to watch and they have a trailer to their new film they are releasing called "If I Could Go Back..."

It's a film geared towards new parents and made in corroboration with parents who have children with Down syndrome from around the globe, to include UK, USA, France, Nepal, Australia, Sweden, Spain. The parents are reflecting on their experiences and passing on some insight to new parents. If I could go back, what would I tell myself? I wrote myself a letter about that!

You can check out their Facebook page and YouTube channel, too.

Saturday, October 28, 2017

Missing Out On Beautiful

Missing Out On Beautiful is a collection of seven short essays about raising a child with Down syndrome written by Amy Julia Becker (author, including the book The Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny).

Amy Julia is offering this collection of essays for free. The book downloads directly to your desktop for reading.

The last essay is actually an interview with her daughter, Penny, who is 11 years old and has Down syndrome.

Friday, October 27, 2017

Deja Vu at the Iron Mountain Iron Mine

Last month when we went to Wisconsin I thought it would be neat if I could take the kids to Iron Mountain Iron Mine. I went there when I was 13 and my brother was almost 11. I thought it would be fun to take Kayla and Lucas to a place I had been when my brother and I were around their ages.

My sister hadn't been before, so she got to experience it too.

Back in the day ... with my mom, uncle, and brother.

Now ... with Lucas, Kayla, and my sister

My brother and me

Lucas and Kayla

Back in the day 

And now my own kids posing with the big tire - who would have thought?







Thursday, October 26, 2017

Sweet Caroline and the Red Sox

It goes without saying that I'm a Red Sox fan. Unfortunately for me, the local minor league team here in Charleston (the RiverDogs) are a Yankee affiliate. We have gone to several games though and the kids enjoy it. A few of those games the RiverDogs have played the Greenville Drive. The Drive happen to be a minor league affiliate of the Red Sox. So it's cool to go to a Boston/New York rivalry game - minor league style.

Greenville is only 3 hrs away so this summer we went to see a game in their stadium - which is built after Fenway Park - Pesky's Pole and the Green Monster to boot!




A tradition at Fenway Park is the singing of the (unofficially official) anthem of the Red Sox: Sweet Caroline by Neil Diamond. It's played at every game. They do the same at the Greenville Drive games, too. It's not quite like being at Fenway Park, but for living in SC it's as close as I'll get.

Kayla got into the song - and as you can see by the video - she makes a friend wherever she goes!








Wednesday, October 25, 2017

Medical Research in Down Syndrome

Down syndrome continues to be the most common genetic disorder and the least funded. There is so much to learn about the connections to the 21st chromosome and research is so important.

It's important not just to the individuals with Down syndrome and their families - but it is important in the general population as well. There is a huge connection with Down syndrome and Alzheimer and potential cures for Alzheimer can help the general population. There is also interest in researching in why people with Down syndrome are less likely to get certain cancers - like breast cancer - or more likely to be diagnosed with leukemia, but have a higher rate of survival.

Frank Stephens, a self-advocate, testified on Capital Hill regarding the importance of funding for Down syndrome research. It's important for his voice to be heard.

As he states, people with Down syndrome are "...a medical gift to society, a blueprint for research into Alzheimer, cancer, and immune system disorders."


You can also watch the testimony of Michelle Sie Whitten, Co-Founder, President, and CEO of the Global Down Syndrome Foundation.

What can you do as families? Have you registered with DS-Connect: The Down Syndrome Registry? You can connect with researchers and health providers and possibly participate in certain clinical studies.

Tuesday, October 24, 2017

I Love the 80s

We were fortunate to spend another fun family weekend at Camp Victory Junction last weekend.

The theme was "I love the 80s!" How fun for me since I grew up in the 80s :) We were originally on a wait list to attend. A week before camp we found out another family couldn't attend so I didn't have much time to figure out our 80s outfits, but I think we managed ok with what we had.

Joe and I pegged our jeans and I scrunched up some big socks. An off-the-shoulder shirt with a big black belt and a side ponytail completed my look. It was easy to throw together Kayla's outfit- bright colors, denim jacket, big belt. Lucas was a little harder, but athletic/track pants seemed to be big for boys and he wore a shirt with ADIDAS since that was a popular brand.

I was disappointed with my hair though and that I no longer have the type of hair (ie no bangs!) to curl and tease and make big - haha!

We had a nice weekend away and I enjoyed not having to figure out meals for a couple of days and also not having to worry about what Kayla can eat. They accommodate for dietary needs.