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.

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.


1 comment:

Tara said...

She is so cute and tiny! Eon, at 9 mos. is 19lb 8oz., so I can just imagine how tiny Braska is. So glad the appt. went well!