The Purpose of this Blog

The goal of this blog is to provide education and bring about higher awareness about Down syndrome. It is to share that life with Down syndrome (DS) is not scary, horrible, or to be feared.

My experience comes from raising my daughter, Nebraska Larae (Braska), born November 2006 with Down syndrome.
The posts on this blog are related in some way to life with DS or disability, and they are reposted here from my other family blogs. There are links to those blogs in the margin on the right side of this blog if you would like to visit them directly.

Thank you for coming by.

Thursday, August 27, 2009

Gotta love Albert!

Check out this press release about the new clinic for ADULTS with Down syndrome soon to be opened at St. Luke’s Hospital in Chesterfield (St. Louis metro area). 

I’ve known about this project for a while since my sister works for St. Luke’s (I call her my favorite big wig…I’m so proud!) but it’s new news that Albert Pujols has signed on in cooperation with this new clinic.  That is exciting!

pujolsswing

Many of you may know that Albert has a daughter with DS, and he has a foundation here in the St. Louis area, the Pujols Family Foundation, that does alot of things for people with DS and their families. They are very popular among the DS community in these parts!

How exciting is it to have an ADULT clinic designated for people with DS?!?  So many of us cherish our DS Centers for our kids, and it’s great to see a need noticed to focus on their health after they’ve “aged out” of the pediatric practice system.  Yay St. Luke’s!  Yay Albert!  Go Cards!

Monday, August 24, 2009

Braska: I love Signing Time and Miss Rachel!!

Last month, some guy broke Daddy’s window on his car when he was at work and that guy took some stuff from our car.  He took my movie player!  Can you believe that??  (You can read more about the story here and here and here.)

One of the movies I got at the library was in the movie player, and the guy threw it away.  Why wouldn’t he want to watch it?  That’s what I wanna know!  Anyway, since he threw it away, we had to pay the library for the movie, and Mommy talked about it on her page.

Miss Rachel, the one who I watch every day on Signing Time and Baby Signing Time, saw Mommy’s story about it, and she left her a note.  They talked a little and Miss Rachel said she would send me a new movie since that guy took the other one I borrowed from the library!  Isn’t that super nice!?!

So the other day we got a box from Miss Rachel and this is what it had in it… (Remember, you can click on pictures to see them bigger.)

Can you believe all that stuff??  Me and Mommy were SO excited!  I just kept telling Mommy “I want Baby Signing Time movie please!!” 

There are some cards that have words and pictures of the signs on them.


Here’s the movie that the guy took from us.  Miss Rachel even wrote me a note on it!


And she sent T-shirts for me AND for KiKi!  


This is a picture of Miss Rachel and a note to me.  We’re gonna put it in a nice frame so I can keep it forever!


And this is the movie that she sent so that the library could have theirs back too!!
  

There are also some fun things like stickers in there for me and KiKi to play with.  They go on our skin.  Mommy says it’s like a taa-too.  Oh, and there’s CDs too so we can listen to the songs and sing along when we can’t watch the movies!  I tell Mommy “I want mooosic, please!”

Isn’t that the nicest thing you ever saw?  Miss Rachel did such a fun thing for me because she sent me my favorite things ever.  Signing Time movies!!!

Thank you, Miss Rachel!  I am watching them lots and lots.  And I especially like to sign “wind” when I lay on the floor by the thing that blows cold air out at me.  I always tell Mommy “Cold! Brrrrr! Wind!!”

If you don’t have Baby Signing Time movies, you should go get some right now!

(Mommy note: The signing has just really taken off, another spurt, except that she can verbally say all the words too.  I hope to have some video of her latest stuff very soon.  The full-sentence requests are just plain amazing, I think!  And once again, many thanks, Rachel!!)

Thursday, August 20, 2009

Braska: Grammy’s names

My name is Braska, and KiKi’s name is KiKi. But Grammy calls us different names. I’ve been saying them alot, so we made a little movie for Grammy.
(I’m a sweetie peach, and KiKi is a sugar plum.)

Thursday, August 13, 2009

Braska: Bathtime Practice


KiKi took a bath with me yesterday for the first time, like for real. She didn’t have her own tub or a chair or anything! She took a bath just like me, just sitting in the tub.

While we were in there, I practiced a few things like letters and biting on my yellow letters (it’s supposed to help me eat, Mommy says).

So here’s a little movie to show you some fun stuff…

Kinlee did her own movie of her stuff on her page if you wanna see it, too.

Monday, August 3, 2009

Braska: Catch-up: A new park

Our group of friends who have the “extra” cool genes like me met at the park a couple weeks ago.  But it was a different park than we usually go to, so I had all kinds of new things to look at. 

I think you all know by now that I just LOVE to swing.  And this park had swings!  Yay for swings!  So Daddy took me over and pushed me on the swings for a while.  I could just do that all day long!

I like to crawl all around, and Jack’s sister Madelyn crawled right around with me. 


We went on the slides too.  There was a bunch of slides.

And there was a thing that the bigger kids were climbing on, but I couldn’t do it yet.  So I just got inside and peeked out the window.

Here’s all of us, except for one tiny baby who had to go home earlier.  Look at all those boys with me!