Another big day soon!

Monday will be a big day, since yesterday I turned 3. And yep, we did another new background!!! Yay!!!

Big day for me!

Look around and see my new background! Can you guess what is special about today?!?!

(In case you're looking at this after today, I'll put a picture in here so you can see what we were getting excited about!)

Mommy life: One very precious angel

From a post today at JustRK…

That beautiful little face has found a home in my mind in a way that few have.  Little precious Laynee.

Jalayne Grace.

Read more…

And I helped!

On Sunday we went to Grandma C’s for football again.  We do this most every Sunday because we can watch Da Bears at her house but not at our house.  Our TV doesn’t show us Bears.  I don’t know how that works. Maybe Grandma C made it that way so we will come see her.  She’s tricky sometimes like that.

This week we got to see Aunt Doris and Uncle Tim. Aunt Doris is Grandma C’s sister, but they live far away in a state called Washington, so I had never got to meet them.  They are both VERY nice!! I wish they lived where we could see them more.  They have a daughter named Larae and that’s where I got my middle name, isn’t that neat?  I hope I get to meet her someday soon.  And Cousin Priscilla and Cousin Zachary too!

Aunt Doris cleaned up the kitchen after dinner and she let me help her.  I think I did pretty good for my first time.

I hope we can see you again soon, Uncle Tim and Aunt Doris!

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.

 

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.”

Happy Grandma C Day Everyone!!

Today is my Grandma C’s birthday and it’s the coolest thing! Everyone all over is celebrating with her! We went to her church last week for a party for her, and there was lots of kids all dressed up for her birthday. I was a cute pink monster, but we don’t know her name. (I heard Mommy call me Princess Monster Snot-a-lot, so maybe that's it.)

And today we’re gonna put on our Grandma C’s Birthday outfits again for a party at church tonight! There have been people all around today with funny outfits on for her birthday. Isn’t it nice that everyone is helping Grandma C celebrate so fun?? I didn’t know that so many people knew my Grandma C!!! Happy Birthday Grandma C!

Oh, and it’s my friend Georgia’s little brother Rainer’s birthday too. He’s 1! So maybe some people by where he lives are dressing up for him too. Happy Birthday Rainer!

And there’s another special birthday that happened too…I’ll tell you about it soon!