Buddy Walk 2013

Team Sophie rocked our 7th year of participating in the Buddy Walk for Down syndrome awareness.  To be honest, I wasn’t sure we would be doing it this year for a variety of reasons. 

I formed a new Daisy Girl Scout troop for Sophie’s 1st grade and Kindergarten peers.  Our troop decided to support Team Sophie and Team Nate.  Maddy is in 1st grade and her handsome little brother Nate happens to have DS.  Somehow we ended up in the local paper.

By Linda Stein
lstein@mainlinemedianews.com

On Sunday about 4,000 people will gather to take part in the 12th annual Buddy Walk and Family Fun Day which benefits the Children’s Hospital of Philadelphia Trisomy 21 Program.

Trisomy 21 refers to the presence of three copies of the number 21 chromosome, rather than the usual pair. It causes Down syndrome, one of the most common genetic disorders affecting some 350,000 Americans, according to the Down Syndrome Society.  This year, 16 Girl Scouts, who are part of Sophie’s Team, will take part.

Sophie Schrad, 6, a Radnor Elementary School student with Down syndrome, will join members of her Daisy Scout troop taking part in the walk, said her mother, Jen Schrad. The Schrad family has participated in the event since Sophie was born, said Schrad, who is also the troop’s leader.  read the full article here.

Not only was I blown away by the support from Sophie’s troop sisters, but I came home the other day to find an envelope full of more donations from our elementary school community for Team Sophie.  We are overwhelmed.

Darth Vader & a very brave young Jedi

We are exactly where we are supposed to be.

Villanova Buddy Walk 2012

Please join Team Sophie on Sunday, October 7, 2012, at Villanova University Stadium for The Children’s Hospital of Philadelphia 11th Annual Buddy Walk^® and Family Fun Day. In addition to the Walk^®, the day will be filled with great activities for the whole family. We would really like to see as many of our friends as possible walk with Team Sophie!

In just ten years, this Buddy Walk^®has raised over $2.1 million for the (Down syndrome) Trisomy 21 Program at The Children's Hospital of Philadelphia. By working together we can make this wonderful event even more successful.

To Register to Walk with Team Sophie, visit our page at: http://giving.chop.edu/goto/Team_Sophie

Scroll down to Team Sophie and click Join Team and follow the instructions.

To Donate without Walking, visit our page at: http://giving.chop.edu/goto/Team_Sophie
Scroll down under the photo of Sophie and click, Donate to Team Sophie! 
 

On behalf of our family and Team Sophie, we thank you for your support.

Gratefully,

Mark, Jen, Alexander, Sophie, & Helena

Down Syndrome Awareness Month

Team Sophie! Thank you Maureen, Ras, Samuel, (and baby to be) for joining us for our 2nd Buddy Walk at VU.

October is Down Syndrome Awareness Month. For the past few years this blog has participated in the 31 for 21 challenge. 31 for 21 is when bloggers commit to post every day in an effort to raise the awareness of Down syndrome, otherwise know as Trisomy 21. Although our lives are too busy this year to participate, you can find a list of bloggers who have taken the challenge HERE. You can also do a search on this blog for 31 for 21 and find around 100 posts from previous years.

Once again Team Sophie rallied for our local Buddy Walk. Here is Alexander with the Star Wars character Boba Fett (he's going as Boba Fett for Halloween this year). Seeing his favorite characters in person proved a bit scary, so all of the pictures are of Alexander with the Star Wars guys in the background, a safe distance away.

Grandma Paula flew in to spend the week with us and walk with Team Sophie. We are so blessed! While we celebrated near Philly, family members who could not make it once again rallied and attended the Buddy Walk in my hometown. Pictures forthcoming (hint, hint Liz!) We are touched beyond words to see such an outpouring of love and support from our family and friends.

We are grateful for our wonderful friends. I met Melissa in the C2P2-EI course that I took through Temple University - Institute on Disabilities. She brought her sweet family and signed each of them up to different teams as so many of our friends had teams participating this year. Melissa and her husband were on Team Sophie. Thank you so much!!!

This is my friend Kim representing her son Nolan & Sue representing her son Sylas. Mara, Nancy, and Cecilia were busy bees as they worked the auction tent and shot photos. If any of my C2P2-EI friends have a picture of us together, please send it to me.

I got up close in personal with these guys for Alexander. Note to self: Stuffing the sweatshirt front pocket with cameras, kleenex, etc. WILL make you look 7 months pregnant. D'oh!

Team Sophie and Alexander as close as he could muster.

The Buddy Walk at Villanova Stadium is a big event. We have bounce houses, live music, cheerleaders and football players cheering on the teams, face painting, food, exhibitors, a silent auction and raffle, games, Star Wars characters, Berenstain Bears, Elmo, a Tot Lot play area, and more. It truly is a great family fun event.

We even had a chainsaw ice sculpting artist make this right in front of our eyes.

Here's Sue and Sylas. Sy is currently hospitalized with Croup (mama has it too). Please send up a prayer for healing.

Buddy Walks are always a highly emotional time. There are great joys to be sure and each year there are fewer tears. Yet old wounds that never fully heal can easily be broken open. Memories of past events collide in my head with thoughts about our family's future, about Sophie's future. I wonder about her siblings and when the day will come when one of them asks why we have a Team just for Soph. We don't hide the fact that their sister has DS, but our discussions are purposefully age appropriate. To them, she's just "Sister."

We had a prenatal dignosis of our daughter's DS. We were scared and hadn't a clue as to how incredibly lucky we were. We needed the gift of time to see with new eyes. Having a child with DS has its challenges (as all children do), but the overwhelming joy far exceeds the hard times. Sophie is a gift and our family is blessed. Life is good. Go Team Sophie!

Team Sophie

Please join Team Sophie on Sunday, October 2, 2011, at Villanova University Stadium for The Children’s Hospital of Philadelphia 10th Annual Buddy Walk® and Family Fun Day.

In addition to the Walk®, the day will be filled with great activities for the whole family. We would really like to see as many of our friends as possible walk with Team Sophie!

http://giving.chop.edu/goto/TeamSophieCaptain

In just nine years, this Buddy Walk® has raised over $1.9 million for the (Down syndrome) Trisomy 21 Program at The Children's Hospital of Philadelphia. By working together we can make this wonderful event even more successful. There are many ways to get involved, even if you can't join us on the walk. For more information including the schedule of events, registration information, and donation instructions, visit our page at:

http://giving.chop.edu/goto/TeamSophieCaptain

On behalf of our family and Team Sophie, we thank you for your support!

Other ways to support Team Sophie even if you cannot walk with us include:

• Buy your Team Sophie merchandise HERE
  


• Take the R-Word pledge HERE


• Make a donation HERE

Team Sophie

Our Buddy Walk is taking place this Sunday, October 3rd at Mark's university and all proceeds benefit the Trisomy 21 Program at Children's Hospital of Philadelphia (CHOP)! I am so excited to head to the football stadium for a day of family fun. If you are in the Philly area this weekend we would love to have you join Team Sophie.

Visit our fundraising page HERE

Want some really cool Team Sophie apparel? Visit our on-line store HERE

Other ways to support Sophie and all are friends with Down syndrome are to take the pledge to voluntarily remove the r-word (retard/retarded) from your every day language when used as an insult. Click HERE or visit www.r-word.org

The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

The Buddy Walk is a one-mile walk in which anyone can participate without special training. It is a wonderful, heart-warming event that celebrates the many abilities and accomplishments of people with Down syndrome. Whether you have Down syndrome, know someone who does, or just want to show your support, come and join a Buddy Walk in your local community!

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(Mostly) Wordless Wednesday

It's supposed to be a wordless post. I'm supposed to leave Alexander's Halloween candy out of my mouth.

Helena's 1st bite of real food, sweet peas. We're holding off for a few more weeks before trying again.


Charlie Brown swirly

Caramel Candy Apples, gifts for our Buddy Walk team members

sneak peak at pictures of our Buddy Walk with Allison, Sophie, and Emmerson

Busted

Jack-o-lantern at Trunk-or-Treat (Best Costume, Judges Choice, made by MIL for BIL over 20 years ago)

Buddy Walk on Saturday!

It's not too late to get involved with the Buddy Walk, scheduled for Saturday, October 24th. Registration begins at 9:30, and the walk starts at noon. This is going to be a great family friendly FREE event featuring live music, food, carnival games, Monster truck, fire truck, toddler area, mini golf course, and bounce houses. If you're in town, please join Team Sophie. We are still collecting donations which go to support our loved ones with Down syndrome. Please consider making a donation today!

Equipment

Sophie has a new bed! She's been working so hard to get her core strength built up so that she can handle getting in and out of her bed without falling. Last night we set it up and she loves it. Unfortunately, she flops around quite a bit in her sleep and the safety bars are no match for her. So, for a while, we'll be pushing up a toy box and pillows next to it to help contain her. For us, this bed is a big deal. We even had it written into a few of her IFSPs as a goal.

The 2nd new item in the house comes to us from our new Physical Therapist. Until this month Sophie had been getting PT off site. We loved it because it got us out of the house and they had lots of great equipment. Our PT moved in June and our new PT is going on maternity leave. So, we are now having Mr. B come over once a week to do therapy in the home. We'll be going outside when we can and even other places, like a local indoor playground.

Today Mr. B delivered a pediatric walker. Kids benefit from these walkers for many reasons. For Sophie, having Ds has meant lower muscle tone and loose hips, both things that make learning to walk quite a challenge. When we were going off site for PT, we couldn't get Sophie interested in using a walker. Now, she's walking pretty well (getting stronger, more confident, balanced, and choosing to walk vs. crawl more and more every day) Actually, her walking and scooting on the stairs today blew Mr. B away.

Still, though she can use the walker at home with ease, I think the challenge will come outside of the home. Sophie prefers to be barefoot as even socks can bother her. That means that when we leave the house in socks and shoes, she usually needs to be carried or ride in the stroller.

It will be interesting the first time we take her out in public with it. Maybe we can even see if she can do a little bit of the Buddy Walk with it. Now that would be something, walking the Buddy Walk.

For another mom's perspective, be sure to read Amy's post HERE.

and yes, those are Halloween mats on the floor. I just had the carpet cleaned and I figure, if you can't beat 'em - join 'em. So far they've worked out quite well.

Team Sophie Gear Promotion

We're SO excited that our Buddy Walk is 2 WEEKS from today!!! Team Sophie is so lucky to have many family members travelling from 2 states to join us that weekend. The Buddy Walk is our local Down Syndrome Network's largest annual fundraiser and day of Ds awareness. Team Sophie has been raising funds that will go to support the programs of services of our local group and the efforts of the National Down Syndrome Society and we need your help.

Every dollar we raise helps us get closer to our goal and the funds are used to enhance the lives of people with Down syndrome. There are 3 ways that you can help. Come walk with us on Saturday, October 24th at the Champaign County Fairgrounds. Registration is free! Make a donation to Team Sophie by clicking here and buy Team Sophie Gear at our store.

We are a little behind in our fundraising this year, so we're doing a promotion. The next person who donates $25 or more to Team Sophie will receive an adult XL white hooded Team Sophie sweatshirt with small logo, a $35.99 value (as seen on Mark below). We also have a children's size small white t-shirt, with small logo for the next person who donates $10 or more to Team Sophie, a $14.99 value, (as seen on Alexander below). Make your donation and then leave me a comment so I can deliver your item to you. Remember, I only have 1 of each for this promotion! All donors will receive a Team Sophie sticker and photo card while supplies last.

Our store doesn't only offer t-shirts, hats, and sweatshirts. We also have baby bibs and onsies, tote bags, a computer mouse, mug, water bottle, stickers and buttons. Help raise Ds awareness and support Sophie by proudly wearing or using one of our products year-round. I kept the mark up low to make the items as affordable as possible in our store and 100% of proceeds go towards Team Sophie's total.

Check out some of our gear below. T-shirts are short sleeved and can be layered with a long sleeve shirt for warmth as seen below. They are nice and thick, high quality Hanes shirts/sweatshirts. Hats come in white or black. Be sure to visit our store today!

Team Sophie Gear, Store Grand Opening

Believe it or not folks, the season for Buddy Walks® is upon us. This year I decided to open up a line of Team Sophie gear through our own online store (here) as we received so many compliments on our team logo last year. Whether you plan to come walk with us or not, you may just find something you can't live without, so make sure and pop over to see what we have available. All proceeds go towards Team Sophie's DSN fundraising total. Click here or see the sidebar of the blog for the link.

If you're a new friend, or an old friend reconnected through the wonders of facebook, you may not be aware of what the Buddy Walk® is. The National Down Syndrome Society established the Buddy Walk® in 1995 to promote acceptance and inclusion of people with Down syndrome and to celebrate October, National Down Syndrome Awareness Month. Since then the event has grown to 275 walks! This is an affordable (and in the case of the walk in Urbana, IL - FREE) family friendly day filled with games, music, food, and fun. It's an opportunity to come out and show your love and support for people with Down syndrome, like my beautiful daughter Sophie, and I promise you, it will melt your heart.

This is our 3rd year of participating and you have TWO opportunities to walk with Team Sophie. On Saturday, September 12th we will be joining our friends in my hometown of Waterloo, IA with Designer Genes. Then again on Saturday, October 24th we will be walking in Urbana, IL with the DSN. Please let me know if you plan to attend.

Register for the walk in Waterloo by emailing designergenes2005 @ yahoo.com or calling 319-404-0396. Register for the walk in Urbana by visiting Team Sophie's DSN fundraising page (here) and click the link that says "Join this team."

Additionally, Team Sophie's DSN fundraising page is up and running and can be accessed by clicking here or on the sidebar of this blog. Donations are tax deductible and go towards local and national programs and services that enhance the lives of people with Down syndrome. Your contribution to Team Sophie is greatly appreciated.

Read more about our day last year here.

Spa Day, New Me

At our Buddy Walk last October, I won the mama of raffle gift baskets. It included tons of great prizes like an hour of Merry Maids services, pizza, ice cream cakes, scrapbooking stuff, ect. The best one has to be the gift certificate to a spa. I've been saving it and yesterday I cashed it in. Mark took the kids all afternoon (including taking them both to Sophie's PT). He also threw in an hour massage (THANK YOU HUBS)!

(As always, click on the pics to enlarge)

BEFORE

CHANGING ROOM FOR MASSAGE (yes, that's a robe)

12 INCHES CUT OFF AND DONATED TO LOCKS OF LOVE

I've wanted to do this for a long time

After my hair appointment, I got a makeup lesson and application. They used Bare Minerals, (which I didn't know ahead of time). Since this is what I've been using for a while, that was an extra treat. I went for the more dramatic smokey eyes for a dramatic change.

NEXT, PEDICURE (My 1st ever)

It was a whole treatment; soaking, exfoliating, foot and leg massage while in a massage chair, and making my preggo feet look good.

OPI color Boris and Natasha

AFTER

Mark and the kids picked me up and we drove through campus to witness the spectacle that is Unofficial and to pick up some Thai food for dinner. I thought I'd try something new and asked for a recommendation. It wasn't anything exotic, but it was tasty. However, within 30 minutes I had my first allergic reaction to food. I broke out into bright red splotches and very itchy bumps from my face, all down my back and chest. Benadryl, hydrocortisone, Tylenol, going to bed early and a phone call to the night OB nurse helped. Things are much better today.

I wasn't able to recreate the hair style exactly (I'm much more poofy today, but then I don't have the patience for spending much time on hair. Still it's a dramatic change and oh so cute. When I got picked up yesterday, Alexander said excitedly, "Oh Mom. Your hair is beautiful!" That's all I needed to hear.