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.

Saturday, November 28, 2009

Reminder to readers...

In case any of you missed it, what few of you are on this blog as opposed to my others.... these are re-posts from our main blogs, not all the posts from there make it here. So if you're interested in more about the girls, visit their blogs directly. Posts are more frequent there! :o) Thanks!


Friday, November 27, 2009

3 birthdays for 3! #3

Yesterday was Thanksgiving Day.  I know that because it’s Mommy’s favorite day, so she always talks about it coming right before we get ready for Christmas. 

But yesterday was also my birthday… again!!! Remember I told you I had 3 birthdays for turning 3?? This was #3, and it was with all my family from Mommy’s side.  We all went to Auntie Skye and Uncle Jody’s house for our big turkey dinner, and we also got to have a little bit of birthday party too.

Here’s everyone who was there…
Uncle Patrick and Auntie Rachel (She’s Mommy’s sister.)

Uncle Jody (Mommy’s brother) and Auntie Skye

Papa, Grammy, Auntie Julia, Uncle Ryan, and Auntie Joy. (Mommy’s mommy and daddy and other sisters and brother)

And Daddy and Mommy were there too.  Guess you probably figured that out already… KiKi was napping, so she didn’t get in the picture with us.

Everyone helped me blow out my candle since I’m not so strong to do it by myself.

Then I opened a present from Grammy and Papa.  First I read the card on top. 

Then I opened the present. Daddy helped, but I pulled the paper some.

It was a book about kids in the Bible.  I love Bible stories!

And there were two puzzles in there.  One of them had animals on it.  This one used to be Mommy’s. She was so surprised to see it she kept saying, “Wow!” 

Here’s the back of the puzzle… it has Mommy’s name on it and the guy who gave it to her when she had a birthday to turn 1.
And Uncle Jody and Auntie Skye gave me this table so I can sit and read books and color.  I tried it out as soon as I got home. My chair from Miss Karen fits just right!

Thank you to everyone who made all 3 birthdays so much fun!  I can’t wait til next year!  I’ll get 4 birthdays for 4!  Oh, wait… Mommy says it doesn’t always work that way.  I guess I’ll wait and see.

Hope everyone had a fun Thanksgiving!

Tuesday, November 24, 2009

3 birthdays for 3! #2

Sunday was time for Bears again, but since it was at night this time, we did some birthday stuff first.  Well, FIRST we got dressed and went to church at PaPaw’s church.  We put on pretty outfits and everything!  But when Mommy wanted to take pictures, we just got silly.

Grandma C, PaPaw, Uncle Ethon, and Miss Cheryl came to watch the Bears with us.  We did birthday candle again, and Mommy helped me blow it out.

PaPaw and Grandma C got me a neat bike! It has 3 wheels since I’m 3.  Uncle Levi and Auntie Janice sent me fun number puzzles. 

Monday, November 23, 2009

3 birthdays for 3! #1

You probably heard the news that I had a birthday on Saturday. I’m 3 now!!!  I can even tell you if you ask me how old I am, but sometimes I forget and say “2!!”  I was 2 for a long time, you know!

I guess since I’m 3, I get 3 birthdays. Or something like that.  I had one on Saturday, and Mommy said that was the real day.  Then I had another on Sunday, and I’ll get another one on Thursday this week!  This birthday thing is fun!  But you’ll have to wait til later to hear about the other ones… there are too many pictures!

First I got up and dressed in a new outfit.  Mommy got me this shirt and sweater back when she thought I would wear it when I was the number of months on the tag inside, but I never was big enough when I was 18 months, so it’s been waiting for me.  We decided that even though it was still a little big, I was going to wear it for my birthday.  And you know Mommy, she always has to take a bunch of pictures… (remember you can click on the pictures to make them bigger)

Mommy and I went to see Dr. R, and he looked at my second belly button.  Then we went to where they stuck me in the arm to get some blood out, but I didn’t cry much, and they gave me a sticker.

When we got home, there was mail for me!  Aunt Chris and Uncle Don sent me a present! Books!!

And I got a birthday card from Miss Jo and Mr. Bill.

Look what’s in there?!?!

After nap, we went to see Jack at his house.  Miss Julie and Madelyn had got me this cute “pwincess” or at least that is what I kept calling it. Mommy was surprised I knew that word.

Me and Jack got in the big chair for some pictures.

And then I got him with tickles!!

Mommy had a little cupcake with a big 3 on it and it was on fire!  She said it was a candle, and I was supposed to blow on it.  I asked Jack to help me fix my sleeve first.

Then we did some YAY’s!

Here’s a little movie of me saying my new number. 

I did taste the stuff on top of the cake, but it wasn’t my favorite.  Jack liked it some, though.

Thank you, Miss Julie!  Thank you, Aunt Chris and Uncle Don!  Thank you, Miss Jo and Mr. Bill!

I’ll tell you about Birthday #2 tomorrow!

Wednesday, November 4, 2009

Loaded question—Prenatal testing

A student working on a project on Down syndrome in college posed a question yesterday on one of the forums I frequent.

What would you suggest for someone else who is going to have a baby? Would you suggest that they get the amniocentesis or any blood work directed towards finding any potential problems or was it just easier not to know?

And this was my response…  I know this is a controversial topic, but I wanted to share my perspective.

This is quite a loaded question, in most circles, but I'll answer as honestly as I can.  I didn't know prenatally and I'm very glad that I didn't.  For me, that is because my marriage was in a very fragile place, and if we'd have known this, I'm sure it would have been over before she even arrived.  I would not abort a baby for any reason, so when I was offered an amnio, there was no reason to do it and take any risk related to it. 

Even though we struggled with the first couple weeks of adjusting to all the news, I wouldn't trade that for the months of worry, unknown, fretting, etc, that I know would have come if we'd have known prenatally.  The time we had to adjust was helped in that we had a baby to hold and SEE and cuddle as we adjusted. She was "just a baby," not an unknown disability with problems and delays ahead of her.  That made ALL the difference, I firmly believe. 

I'm aware that not everyone handles this the same way, but I know without a doubt that we were blessed in not knowing, and every day since and because of her arrival, as well.

In an "ideal" situation, I'd love to see much less prenatal testing, because I do believe that the majority, by far, react to the information they are given based on that initial fear and emotion, and in doing so give up a child that they would love and treasure if they only had the chance to meet him.  If pregnant women could learn about DS, have the opportunity to read stories like those in Gifts and Gifts 2, as part of their education during pregnancy, then the "preparation" that so many desire would be there, and those who did not have a child with DS would be that much more aware of those they will encounter later on.  Increased awareness across the board, and inevitably more precious babies allowed to be born...seems win-win to me. :o)

I know we don't live in "ideal."   I also want to stipulate that I know that not EVERYONE who gets a prenatal diagnosis aborts, but the current stats, as recently as this week, still state that over 90% of those who DO know prenatally DO abort their babies.  But the truth is that in all our desire to know and be prepared we still can't know what our child will be like, we can't know their strengths, what they have to offer the world, and how they will bless the lives around them, even through struggles.  If the parents do not know prenatally, information can be found, adjustments can be made, all kinds of options are available, even if they feel unable to raise the baby.  BUT if they do know, and in doing so if they decide that the fear and unknown is too much and they decide to abort their baby, that decision can NOT be adjusted to, changed, or reversed. 

So to me, the benefit of knowing is not worth the very high cost of knowing.

Tuesday, November 3, 2009

Mommy report: DS center, 3-year check up

It’s late and I’m more than tired, but if I don’t get some of this down now, I’ll totally forget. So bear with me as I document a little.  If I leave something out that’s interesting to you, feel free to ask.

Today was Braska’s 3-year appointment at the DS Center at St. Louis Children’s.  We love this place. It is a large part of why we now live here.  If you have a kiddo with DS and you’re anywhere within about 3-4 hours of St. Louis and you’re not seeing these docs for yearly check-ups, you are missing out. I’ll have to talk more about why it’s helpful and important to us later, but really… it’s totally worth a day once a year.  To talk with people who deal with and know DS thoroughly and often.  Priceless.

We used to make these days very full, seeing up to 6 specialties in one day, plus labs, but part of the beauty of living nearby instead of 3 hours away is that we don’t have to do it like that anymore.  Today we saw the doc at the DS center, the cardiologist, the ophthalmologist, the optometrist, and had labs drawn and x-rays taken.  And it was a short day, relatively.

Dr. Grange is the DS doc, and she is wonderful. She knows her stuff.  We don’t have to prompt her on what’s up with things, we don’t have to wonder if she’s read the latest info or guidelines.  DS is what she does, and it’s great to have that available.  She was very pleased with how much Braska has progressed in the last year, especially with her speech.  Braska was in mimic mode today and had to repeat practically every sentence-ending word all day.  She was especially into her “hi” and “bye” today as well as “thank you, you’re welcome” which all comes out like one response and tends to crack people up.  She “you’re welcome’s” herself after she says “thank you” and it’s just too funny.  I need to capture it on video. 

Dr. Grange ordered labs to test for thyroid and blood counts and she ordered x-rays of the neck to rule out AAI, which can be common in kids with DS, so they check it at 3 years old.  We’ll get those results back soon.

Dr. Johnson, cardiology, is one of our faves. He is just so nice.  He listened to her heart for some time and said it was great.  She has the faintest murmur that at times isn’t there at all.  She doesn’t have any trouble with leakage that would cause concern, and he didn’t even feel we needed an echo today, which is a first at a check-up, so we’re good for another year.  We’ll take it, happily.

Braska weighed 22 lbs 5 oz today, and they measured her at 33 1/2 inches (though this seems to be ever-changing, depending on who measures her). That means in the last year she’s gained just under 3 lbs, as she was barely over 19 lbs 10 oz at her 2-year check.  She’s not anywhere near the “normie” growth chart—height or weight, and she’s barely on the weight chart for DS, at about 8th percentile.  For height, she’s at about 50th percentile on the DS chart.  (For reference, a typical kid in the 50th percentile at age 3 is 37.5 inches and 31 lbs.  Her weight is 50th percentile for a 13-month-old and her height is 50th percentile for a 23-month-old, both on the typical charts.  No wonder she seems quite tiny.)

We also had appointments at the eye center today. We first saw Dr. R, who checked out her prescription, dilated her eyes, and verified that she’s not changed much at all in the last year, which is not great and not bad.  Then we saw Dr. C, the ophthalmologist, and she said that it’s always nice when they actually improve at this age, but it doesn’t always happen.  And as long as it’s not getting worse (the farsightedness), we’ll take it.  We’ll see them again in a year unless there are issues.  We’ll reevaluate at that point if they think any kind of surgical intervention would help.  At this stage, it doesn’t appear that it would. So we’ll stick with the glasses, and we’re ok with that.  Though we will need new frames in the next several months sometime.  She’s wearing the same ones she got when she was 13 months old, and she’s getting close to outgrowing them. 

We did talk about Braska’s tendency to tilt her head to the right to look at things, and often she tips her chin up too, though she doesn’t look under her glasses, just through the lower half of the lenses.  I’ve talked to her PT about this too, to see if it’s a strength issue, and we’re still unclear.  The eye docs agreed that they don’t think it’s a vision issue, so that’s good, I guess.  They recommended seeing an orthopedic doc, though…one specialty we haven’t yet seen.  So we’ll check on that.

Overall, it was a good day.  A few little unhappy times in lab and x-ray, but that’s understandable, and it’s always very short-lived.  Big thanks to Grandma C for keeping Kinlee so I didn’t have to wrangle her in the midst of all the appointments.  It would NOT have gone well, if I had taken her, too.

There was alot of other little tidbits of info that were very helpful, but for now, this is what I need to jot down to remember, so it’ll do.  And I’m off to bed. Sweet dreams to you all… 

I’ll leave you with how we spent our free time waiting and goofing like silly girls.


Monday, November 2, 2009

Braska: Me ‘n Jack: Looking silly

Here’s a couple pictures of me and my guy Jack at his house on Grandma C’s birthday.  See? He dressed up too! He is missing his beanstalk…can you tell what he is??


“Hey, you look funny.”
“Yeah, I know. My mommy put this big puffy thing on me. I like your hat.”