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.

Sunday, March 7, 2010

Braska: Me ‘n Jack: Heart buddies

Not every kid has the kind of cool toys we do at my house.  When Jack was over to play this week, he found my s’tef-a-scop.  Mommy and Daddy used to use it when they put my tube in, back when it had to go in my nose down to my tummy for my milk. 
Both of us had our hearts fixed when we were little babies, we have seen lots of doctors, and they always have these things and want to listen to our insides.  So we know just what to do with them. 

(Mommy note: Jack was SO impressive with this.  This is not a fake stethoscope.  The ear pieces are very stiff, but he managed to get them wide enough to get around his head and in his ears correctly.  Then he picked up the other end and placed it perfectly on her chest and then waited. Like he was actually listening… and she let him, not seeming the least bit surprised. So cool.)

Friday, March 5, 2010

Exciting news (almost) in our family

Jack’s going to have a little sister!!! Woo hoo!  Julie and Allan have committed to and started the process of adopting little Dasha from Eastern Europe through Reece’s Rainbow!  Her name will be Dashlyn Belle, which I think is SO neat.  This has been on Julie’s heart for some time, and it is now so very neat to see them finally able to move forward!

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Be sure to visit their adoption blog here (put it in your reader, Reader users), grab the button above to add to your blog or your Facebook page, and spread the word that another little one has a Mommy and Daddy on their way to get her soon!  Of course, if you’d like to donate to the costs of bringing her home, they’d more than appreciate that as well.

I’m kind of living my adoption dreams vicariously through my friends, and this family is practically family to us, so I’m really happy for them and can’t wait to get to see this little doll smile and play with my girls as they all gang up on Jack.  She’ll be Braska’s new best girlfriend. Can’t wait!

Congrats Julie and the rest of the fam…and many prayers for a smooth process!

Braska: Jack’s gettin’ a sister!!!

Guess what Mommy told me???  Jack’s gonna get a new sister!  She’s already born, so she’s not in Miss Julie’s tummy, but she lives far away, so they have to go get her and bring her home. 



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We are really happy about this because I’m gonna get a new friend to see ALL the time, just like when I get to see Jack ALL the time!  We’re going to have SO much fun!  Me and KiKi and Dashlyn are gonna do all kinds of fun things together, and we’ll let Jack play with us too, of course.  But think of how cute us three girls are gonna be in all our pink!  Miss Julie likes pink, so we are going to make sure Dashlyn has lots of it, don’t you worry.  Me and KiKi have plenty to share.  Mommy even helped make Dashlyn’s blog pink, so you can go see it if you want.

Mommy says it will be a while before she gets to come to visit our house because they have to do a lot of work and go a long way to get her, but I hope she comes soon!

Braska: Me ‘n Jack: Testing the playroom

Today Jack is at my house playing while his Mommy and Daddy go to a meeting that’s important.  I’ll tell you some about it soon… it’s great!

So while Jack’s here, we are playing in my new playroom, Mommy says testing it out to see if it’s fun for all three of us.
 

We have been having a good time so far, playing with everything, doing some dancing, and laughing and just being silly.  Then we decided we’d take a break and get a snack while KiKi went to nap early.  She was kind of grouchy and tired, so Mommy let her to go sleep.

Do you see something neat in that picture?  I mean, Jack’s always the coolest thing, but look at me.  I’m holding my spoon for “scoop and bite” which is what I’ve been working on so I don’t need Mommy’s help so much.  I like to do it, but sometimes I can’t quite get it in the right place.  But yogurt is my favorite, so I try really hard!

I gotta go play more now.  Back to the playroom!

Sunday, February 28, 2010

Past Pics: Pretty

I’m backing up my computer tonight, doing a little overhaul.  I came across a disk that wasn’t labeled.  This was all that was on it. Three pictures.  Braska just before she turned 1.  Priceless.
smiley braska 12-1-07 Braska go bears Braska halloween 10-07

Braska: Happy Heart Day to Me! 3 Years!!

Can you believe it’s been 3 whole years since I had my heart fixed??  That’s right! Today is my Happy Heart Day!

Here’s where you can go back and see the story about all of it if you want to… I have some little friends who will be having their hearts fixed soon, so their mommies sometimes like to see how I did when Dr. F fixed mine.  And Mommy and Daddy like to go back and see how little and cute I was, and what a good girl I was in the hospital, too.

Every year we look at this picture, even though it’s scary sometimes for other people, for me and Mommy and Daddy, it helps us remember how strong I am and how much God has helped me.


And look at me now!!!! 

Tuesday, February 23, 2010

Mommy report: ENT visit

What’s new, you ask??

You might have seen on the Twitter gadget on my blog that we had several things to talk to the ENT about yesterday when Braska saw him.  I took my handy dandy fancy clipboard with my questions ready. 

We addressed her sleep issues, waking frequently, and apneic episodes that have been getting worse lately. 

We’re now waiting for the sleep center to call and schedule her appointment. Depending on what is found, she may be having tonsils and adenoids removed.

We addressed her hearing issues, the fact that she’s been getting lazy with her speech, and seems to show that she’s not hearing as well as she has in the past. 

After the oh-so-fun microscopic exam of her ears, she has fluid again, 4th time in 3 months, and we’ll be scheduling surgery to insert tubes after the results of the sleep study are in.  If we need to do the tonsillectomy, we’ll combine the procedure with her tube placement to avoid anesthesia twice.  Most likely her hearing issues are related to the fluid distorting what used to be clear to her.

We addressed her incessant teeth-grinding, letting him know that it happens when she has ear issues, and it lessens or stops when her ears are clear.

After the typical “kids just grind their teeth,” he did agree that it will likely help to have the fluid situation taken care of via the tube placement.

So that’s where we stand.  We’ll hopefully get the sleep study scheduled in the next few weeks, then after those results are in, we’ll set up the tubes procedure and whatever additional things need to be done at the same time under anesthesia… possibly even dental work that is soon due.

There. You’re up to date. Thanks for asking!