Ramblings on Down Syndrome

I often feel like people don't REALLY believe me when I tell them how wonderful Ruby & Lilya are.  Like when Ruby was a baby, and I'd tell someone that she had Down syndrome, they'd give me that look, full of pity.  I'd say, "No, really, she's AWESOME!" and they'd smile, like 'Sure, you HAVE to say that... '

I think bringing home Lilya does in its own way show that we love these girls, and we're not fearful or devastated by that extra chromosome.  We didn't adopt her to prove a point, but I think by choosing her to join our family, it makes a point on its own.


This is all swimming in my head lately not only because October is Down syndrome awareness month, but because there's an advanced test that will likely be available soon, for pregnant women.  It will be more accurate ... and since the termination rate of babies with Down syndrome already hovers around 90% ... well, it could be a matter of time until it's rarer than it's ever been.

I'm glad people are speaking up -- like this article:  Down syndrome's rewards touted as new test looms

If you don't know who Brian Skotko is, he's a doctor at Children's in Boston, and grew up with a sister who has Down syndrome.  He's well-renowned for his expertise -- and I for one appreciate that he takes the time to make his voice heard with the media, when the rest of the medical profession often leans the other way.

And, I'm so grateful there's a huge community of people -- parents, siblings, people with Down syndrome -- who are blogging and connecting and sharing their stories.  All these people, sharing their daily lives -- that's the real education prospective parents should have access to.


Because, the bottom line is, if it hadn't been ME, I don't know that I'd fully get it.  If I had a cousin or friend who had a child with Down syndrome, I don't know that I ever would've fully understood this simple truth -- I love these girls.  They are my daughters, and I love them.  I love Ruby and Lilya JUST AS MUCH as their siblings.  I don't love them "despite" their Down syndrome -- most days, I rarely even see it.  And when I do see it, it's usually because they are doing something that amazes me, with their perseverance and determination, even when things are challenging.  

What I see -- and what I hope the world will see -- is that they are wonderful, beautiful, delightful, mischievous little girls, and I'm a better person for being their mother.

Popcorn

Braden is now in his second year as a Cub Scout and the annual Boy Scout Popcorn Sale started this past weekend!  Braden's very excited this year about selling -- we spent almost all day Saturday walking around our neighborhood, and he wants to go out every evening after school. His goal is to hit $600 in sales this year, where he gets a cool "$600 Club" badge for his uniform and a fancy-looking Nerf gun. (Well, he also wants to win first prize in his Cub Scout Pack, but the kid who won last year sold over $2,000 so his $600 goal seems a little more reasonable. The first place prize is a collection of Star Wars LEGO sets Braden doesn't have, so you can understand why he's a little obsessed with first place.)

Starting last year, the Boy Scouts popcorn products are changed from previous years -- all microwave products are made with canola oil and all caramel products are naturally sweetened. This year, they also added White Chocolatey Pretzels and microwave Kettle Corn.

Over 70% of the proceeds from the popcorn sales go directly to Braden's local Boy Scouts pack.

Let us know if you want to order anything -- here's a rundown of what's available:

Caramel Corn: $10

Popping Corn: $10

Unbelievable Butter Microwave Popcorn: $18

Butter Light Microwave Popcorn: $18

Kettle Corn Microwave Popcorn: $20

Butter Toffee Caramel Corn: $20

Chocolatey Triple Delight Popcorn: $25

Caramel Corn with Almonds, Cashews and Pecans: $25

White Chocolatey Pretzels: $25

Cheese Lover's Collection (3 bags: Cheddar Cheese & White Cheddar Cheese Corn): $30

Sweet & Savory Collection (3 bags: Chocolatey Triple Delight, Butter Toffee Caramel Corn, Cheddar Cheese Corn): $40

There's also a bunch of bundles that you could order online and have them shipped right to you -- if you click this link, Braden will get credit for your order.

Support the Z Crew!

Please consider making a donation to our team!  The funds we raise at our local walk STAY LOCAL, and support individuals with Down syndrome and their families in a three-county area.

Donations can be made online and don't forget, you can Join our team!


Down Syndrome Association of Wisconsin-Fox Cities (DSAW-Fox Cities) became a new chapter of DSAW in February 2010. DSAW-Fox Cities has many ways in which it reaches out into the community to promote Down syndrome awareness. It is a nonprofit parent run organization that relies on volunteers and donations. The money raised from the walks is used for many beneficial programs, educational resources and scholarships. The following is some of the ways in which DSAW-Fox Cities is working hard to bring both awareness to the community and improve the lives of those with Down syndrome and there loved ones. Your support is instrumental in providing these services.  Please visit dsaw-foxcities.org for further information but the following are some of the things that you have helped make possible.

 Between January-September 2011, DSAW-Fox Cities accomplished the following:

• Served 85+ member families via private Google group
• Reached 150+ individuals or organizations via the monthly email newsletter, website and blog
• Held 30+ social events or educational workshops
• Distributed 35+ Down syndrome information packets for new & expectant families to hospitals, OB & pediatric clinics, genetic counselors, and Birth to 3 programs
• Created 5 new scholarship or grant opportunities for individuals with Down syndrome 
• Funded participation of individuals with Down syndrome in local sports opportunities and the Lose the Training Wheels camp in Milwaukee 
• Funded participation of parents in two national Down syndrome conferences
• Provided $100 gas/grocery gift cards to families experiencing major hospitalization of a child with Down syndrome
• Frequently submitted New Materials Suggestions to local public libraries to update resources
• Donated 180 books to be included in the Down syndrome information packets
• Donated 7 Signing Time school sets to local school districts
• Participated in Building for Kids' Children's Parade in downtown Appleton 
• Funded the Spread the Word to End the Word Campaign in local schools

Lil & Ru thank you for your support!

Please Join Our Team

PRE-REGISTRATION CLOSES ON WEDNESDAY!

You can still register at the walk, but will not be guaranteed a t-shirt.

The 2nd Annual Down Syndrome Awareness Walk will be held in Neenah on Saturday, Oct 1st!  

You can register online -- registration is $5 per person and you get a t-shirt.  New this year -- you can prepay for lunch online, too ($2.00 per person).  I hope you'll join us!!

GO HERE TO REGISTER AS PART OF OUR TEAM!!  :)

For more about the walk and the events that day, read HERE - Rachel Coleman of Signing Time will be returning, we'll have a lot of other entertainment (bouncy houses, clowns, petting zoo, craft table & more!)

If you'd like to donate to our team, you can do so here:  DONATIONS (or through the Firstgiving button in the upper left corner).  

All funds raised stay in our local community.

I hope you'll join us!  We had such a wonderful (if cold) day last year, celebrating those in our community with that little something extra :)

Ohhh, Ruby

Today, Ruby was upstairs, playing in what will be the baby's room. The room where we have all sort of stuff stored for now ... including 2 huge totes of baby clothes from my awesome friend, Sara :)

Ruby loves to play with the baby toys we have stored in there.  She was up there playing happily today, for quite some time.

When Ruby came downstairs ... she walked into a wall and fell over.  It was then I discovered she was wearing a tiny pair of baby pants on her head!  Oh my gosh -- so glad she was okay ... although she was pretty mad about walking into the wall.  It could've been much worse!

So, when we discovered the state the room was in ... all I could do was laugh.

You could barely open the door ...

there were so many clothes on the floor!

and BOTH totes were completely empty.

Oh well -- sorting tiny baby clothes will give me something to do when I'm nesting this winter!

Girlies

Ruby's new 'do is short & sassy ... just like she is!

Lil, reminding me we have cake in the house (these pics were shortly after Braden's birthday)

Lil, showing off a dance move

Good grief, how do we ever get anything done with all the cuteness around here?!

Risks

I've been asked a few times these past couple months if we were doing any prenatal testing.  The short answer is no -- but we're watching for signs along the way.

Am I high risk?  Sure -- I've had two babies with Down syndrome and am older than I was then.  I was 32 when the twins were born, and I'm 37 now.  Both my age and history puts me more at risk for having another child with Down syndrome.

My doctor asked if I wanted the triple screen bloodtest done a couple months ago (which tests for likelihood of Down syndrome, among other birth defects), and I declined.   I told him, "Last time I had that test and it said everything was fine, and I had TWO babies with Down syndrome," and he said fair enough, and we moved on.

However, when I have ultrasounds, we'll watch for warning signs, and if we see anything suspicious, there is more testing I can do (more advanced ultrasound, or an amniocentesis).

We aren't concerned.  If this baby has Down syndrome, then he does.  I'm not worried.  In fact, sometimes I worry the other way -- will I remember what to do with a baby or toddler who DOESN'T have Down syndrome?!

Packer Tickets

Hey local people! 


Our local Down syndrome group is raffling off 2 Packer tickets again! 


Suite Seating for 2 
Packers vs Raiders 
Dec 11 at noon 


Tickets are $5 each


Let me know if you'd like to buy one (or more)!  The raffle will be held on Oct 1, at our Down Syndrome Awareness Walk (which will be lots of fun, so let me know if you want to join us!!)

8 is Great!

For the past month, we've had two 7-year-olds in our home, since Braden & Lil are exactly 11 months apart.

Yesterday, that ended, with our Brades turning 8!  He'd been counting down the day -- and the first thing he asked me that morning was, "Did you take my booster seat out of the van already?"  (Wisconsin car seat laws are children must be in a booster until age 8 or 80 pounds).


Sweet picture of Braden while we sang to him

I love that Braden is happy with my homemade Lego cakes!  Mini-muffins for the Lego bumps on top ... and this year?  Orange frosting, by request!

Braden got to pick where we went for dinner last night (Culvers was the last minute winner -- can't deny this boy loves cheese curds), and then he got to open his gifts, with much cheering from his sisters!

Happy Birthday, Braden!

Ruby got her haircut!

Her hair was always in her mouth or sticking to her face, and she won't keep pony tails in for long ... so, she got a cute new 'do today!


Short & Sassy -- just like Ru! 

Lil looks afraid of Ruby's forthcoming hug, doesn't she?

The girls!
(Lil had to kneel because Karly was kneeling)

Braden's Geography Worksheet

Braden brought home a worksheet today with 4 geography questions, that he had completed at school

1.  Name 2 states that border Wisconsin?  Michigan, Minnesota

2.  What is the smallest state in the US?  Rhode Island

3.  What city/village do you live in?  (he wrote in the name of our little village)

4.  Name a country that is in Europe:  Ukraine

I wonder how many other second graders answered Ukraine?? :)

Oh, YEAH!

Brian laughed at me tonight.  He said, "Really?  You don't know why Ruby is saying, 'Have a good day?'" (from my previous post)


And I said, "I figured it out this afternoon, when I put Ruby on the bus and told her, 'Have a good day!'"


I say it every day, to every kid, as they head out the door (or get on the bus) for school.  Heck, I even say it to Brian every morning when he leaves for work!

What can I say, I'm not very self-aware...

Wordy II

Lilya had her yearly pediatrician appt today, so I dropped Ruby off at my friend's house.

When I picked Ruby up, she said, "Bye!  Have a good day!"  as clear as could be.  That was a new one to me ... I've heard her say, "Hi, how are you?"  but I wonder if her teachers say "Have a good day" at school?  TOO CUTE!

And, Ru chattered away the entire time she played at their house.  I love to see speech developing, for both girls!


And, Lil's checkup went well -- until she had to get a blood draw and 2 pokes, so she was pretty angry when we left.  She's a healthy, growing girl though -- up to 37 pounds and 40 inches tall!  A year ago, she was 31.5 pounds and 37.5 inches.

Wordy

I took the girls to speech all summer, working mostly on putting words together.

Ruby is a chatterbox, and about half of it is intelligible.  Lil is a one word at a time girl ... we think it's still the language transition (Ukrainian to English).

Signing helps Lilya SO much -- even though she can say most of the words she can sign, it helps reinforce what she is saying if we don't understand.  Also, I think being able to connect a movement to a spoken word helps her comprehension.


But!  Lil just signed and said to me, "Cereal.  I. Want. More. Please." without any prompting from me -- she put all FIVE words together in one string.

One slow, contemplative sentence ... but all on her own!!   Yay, Lil!

How many days of school...

until we get a phone call from school?


This year, the answer is THREE.  Three days.


We have 4 kids at 3 different schools ... so which someone were they calling about?


Little Miss Ru!

It wasn't the "Ruby ran off ..." call I was expecting, though. It was "Ruby bumped her head on the swingset." Poor dolly had a bruise on her forehead, but she's fine.



Picture of TINY Ruby on her first day of school, lining up with her classmates.  She's so little!

I love putting Ruby on the bus for school, she's SO excited -- she grins and waves frantically to me & Lil.  I think she's really happy that it's finally her turn to ride the big yellow bus, just like Lilya did last year.

Don't worry about Lil, though ... her bus comes along about 6 minutes later :)

Silly Lily Update

It's hard to read her shirt, but it says, I'm the Pot of Gold at the end of Reece's Rainbow!"

She sure is a pot of gold -- and we are LUCKY to have her!!

Lil turned 7 in August, and started kindergarten last week.  She's in the afternoon class, and loves riding the bus to & from school.  She's in our neighborhood school this year, so she's in the same building as Braden.

The past couple weeks, Lil had been grinding her teeth again -- which she usually only does when she's not feeling well or is over-tired.  It turned out she had a loose front tooth!  On the first day of school, we had corn on the cob with dinner -- and Lil is now missing her top front tooth!  Unfortunately, I think she ate the tooth with the corn...

Last night, we took the kids out for dinner.  The restaurant has kids meals with free ice cream sundaes for dessert, and Lil had her first run-in with brain freeze.  She took a big spoonful of ice cream and made a funny face.  She did it again, and started to cry.  I snuggled her for a bit -- but I also had to laugh a little, and tell her she is SO much like Mama.

Lilya still loves music and dancing - she'll dance in front of her reflection for a long time, just watching how her body moves.  She's very kinesthetic -- she loves swinging and jumping and dancing and swimming -- definitely the makings of an athlete!

Lil still uses a lot of signs, but her speech is picking up, too.  She says AND signs many things together now.  She's still quite the mimic -- if you scratch your nose, she'll scratch her nose and look at you like, "What's that the sign for?"

She's still not a big fan of imaginary play.  She'd prefer to sit and look at the Signing Time flash cards or her ABC book, instead of playing doll house or with stuffed animals.  

Her very favorite song is the alphabet -- she tries to sing and sign along while you sing it (and she does very well!)  She can name all the letters, but not necessarily say them in order.  She also knows the sound each letter makes, and she can usually count to 10.

Anyway ... that's where we are, just over a year home.  

California Trip, Day 6: La Brea

We could NOT hang out all day in the hotel without the kids climbing the walls, so we loaded up to go driving around.  It was Los Angeles!  We could at least drive around Hollywood for a while, right?

Well, as we were heading to Hollywood, we crossed over La Brea Ave and Brian said, "Hey!  Tar pits!" the same time I said, "La Brea!" so ... we changed course and headed to see ... tar, in it's natural habitat!  :)

The first thing we learned that we didn't know is that the tar bubbles, but it's not hot.  Huh.  I always thought it was bubbling because it was hot ... but, nope -- it's the gasses that make it bubble.



Also, there were no dinosaurs in the tar pits -- they formed AFTER the time of dinosaurs.  Who knew?

The tar pits had animal statues ... to help visualize how animals got stuck in them, I guess.

I told Braden to stand by these little trees and he'd look like a giant!
That didn't really happen ... but they do look like something out of a Star Wars movie.

It was hot and we had no other plans ... so we headed into the Page Museum (which is right there at the tar pits).  Many of the fossils they find in the tar are stored right on site at the museum.

Oh no!  A mammoth is going to crush my children!

Actually, many of these large animals were animatronic ... and Lilya wanted absolutely NOTHING to do with them.

Here I am, posing with Dire Wolf skeletons ... if you have to ask, well, you've probably never read the "Game of Thrones" series (which Brian & I are both reading).

We had no idea Dire Wolves used to be real!

Back outside with the stinky tar made Lil much happier!


Then, as we were leaving there was a hot dog truck, so we had an impromptu picnic for our lunch.

First Day of School

The sign of the day:  school!


Yesterday, Ruby started 4K
Braden started 2nd grade
& Lilya started 5K

Unfortunately, Karly leaves for high school so early in the morning, we didn't get a picture with her and the other kids :(  Karly is now a SOPHOMORE!  Which seems impossible, since I swear I was just in high school yesterday.

Later, after lunch, it was FINALLY time for the girls to go to school!

They were SO excited!!

Dancing in the kitchen with backpacks!

1st Day of School Tradition

I know I blogged this every year, but it's a tradition since I was a kid ... on the first day of school, I make M&M cookies for the kids! My mom used to make them for us - she'd even mail them to Mike & I when we were in college.


Ru looks exhausted, because she is!  She slept on the bus on the way home.

Lil kept signing "juice" ... so picture taking wasn't going well :)
She looks pretty tired, too!

Our 2nd grader -- when did he get so big?!

This picture made me laugh -- they're both inspecting the M&Ms on their cookies.

I used the M&Ms we had left from Uncle Mike's wedding -- they have tiny pictures of Uncle Mike and Aunt Cathy on them!  Well, the pictures didn't do so well in the oven, so they were hard to identify.

Karly finally sat down, too --

All 4 kids, eating their M&M cookies!