One CUUUTE baby boy!!

A couple weeks ago, my friend LC’s new little brother, Jace, came to my house.  He is SOO CUUUUUTE!  I love things that are cuuute.  That’s how I say it, too. Cuuuuute!

Jace was coming to see my heart doctor that I’m sharing with him and LC, Dr J.  He’s really good, and Jace needs a good guy, so I thought he would like Dr. J alot.  Dr. J is going to have Dr. H help Jace too, and then he’s gonna be all fixed up!

After Jace had his appointment, he and his mommy Miss Courtney stopped by my house to say hi.  We told Miss Julie and Jack that they were there, so they came by to see them, too!

Jace was kind of hungry, so Miss Julie gave him some milk.  He doesn’t drink much because he gets tired when he drinks.  I used to do that, too, before my heart got all fixed.

Jack checked out Miss Courtney. 

She’s really super cool, and she always plays with us when she visits.  I hope I get to go to her house someday, because I bet it is SO fun there!

We were sad that we didn’t get to see LC that day, but she was having a blast with her friend Alayna.  Maybe I’ll get to play with them both when I go visit.  I’ll have to tell Mommy to get movin’ on that!

Psssst. Miss Courtney, maybe I’ll sneak Mommy’s phone and send you a text.

Hanging out with my friends

This week I’m sick, so I can’t play with my friends.  But I found some pictures that I forgot to show you of some fun times we had lately.

Here’s me and Jack watching Veggie Tales on Mommy’s computer.  Kinlee was climbing up on us but she fell down right before Mommy took the picture.

Then another day I was showing Jack my favorite present from Grandma C that I got for Christmas. 

You put the letters in the little sun and push and it sings a little song about the letter.  Like this… R says rrrrrr. R says rrrrr. Every letter makes a sound, R says rrrrr.  I know the whole song, but I like to push them alot of times before the song is over.  Mommy makes me go to a different toy when I do that, though.

Then on a different day, we left school early to go see Sophie and her family at the place where we see my doctors.  It’s called Children’s.  They are the best, I think.  Sophie has some of the same doctors I do, so she was seeing them that day.

Me and Jack and Sophie had alot to talk about.


Then we let our brothers and sisters in the picture with us.  Except Jack’s weren’t there, but we let him share ours.
 

There’s another friend I got to see, too, but you’ll have to wait til tomorrow to see who it is!

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.

 

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!

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!

One seriously long day

I can't even fathom going through the details right now, but I need to for good record keeping. It will have to wait. I left the house at 8:03am and returned home at 7:05 pm. And I don't live 3 hours away anymore!! These days usually go so smoothly...but the honeymoon is over. This will be the last day we do the full day of visits. We moved here to be close, so we'll not do more than 2 or maybe 3 on the same day from here on out.

Today's accomplishments:
ENT--Check
DS specialist--Check
Cardiology--Check
Echocardiogram--Check
Eye center--Check
GI--Check
Audiology--Check
Lab--Check

Braska did marvelously, with some understandable rough spots. But she was great overall. And thank God that my mother-in-law came along... what a day.

Details later, probably on Braska's blog in the next few days. Ahhh! And I still haven't talked about our good day yesterday... I'll get there. Sometime soon.

Rested... for now

We've had a rough couple nights. Braska's birthday party went well. I'll get to that later, but soon I hope. But last night, Braska went to bed at 8pm (quite early, and without full feeds for the day) and I hit the pillow at about 8:45pm. M came in then too, because none of us have had good regular sleep for a bit. He was out in 2 seconds. I laid there til about 10 before falling asleep, but still. I expected Braska to wake up super early since it was an early to bed, but she slept til just after 7:15am and I slept till right around then. Not a bad deal. I'm up with visions of grandeur for things to accomplish today... we'll see.

Tomorrow is a crazy busy day, 7 appointments at Children's DS Center and various specialists, from 8:45am til about 4pm. Thank goodness for my mother-in-law coming along to help occupy and be extra hands through the day!

November is here

Fair warning...I'm not all that "with it" so who knows if this will be cohesive or not.

October went fast. I didn't get the whole post-every-day thing, but I did get in 31 total. Does that count for 31 for 21? I'm not going to stress over it, for sure. I did enjoy all the updates from all of you. But there were a few times when I felt posts were below par for my goals with this space. Not the end of the world, of course, but still...

November's going to be a busy one too. Tomorrow's the big day. Election day. I've already voted, thankfully, so that's nice. I can't tell you how happy I will be to not see another campaign ad of any kind. I've been praying often about this whole thing for months. No, that doesn't mean, "God, please don't let him win." That's not it at all. It means asking for peace and patience, as well as understanding that often history shows that nations are given what they ask for, even if it is not what is best overall. Sometimes that means we'll hurt for a while before we realize what is truly important. As a country, this could be a tough time. Honestly, it could be tough with either party winning. My hope is above all that we will realize that we are each accountable for our actions and choices. We live in a great country! And that is one thing, I don't have any desire to *change.*

After election day, we'll be looking toward our 8th wedding anniversary, my sister Julia's 13th birthday, my parents' 38th anniversary, Braska's 2nd birthday, a full day of appointments at Children's (7 hours, 7 appointments, one day), and finally Thanksgiving. Throw in 12 therapy appointments, 2 playgroups, 2 more dr appointments, and a smattering of other things on the calendar and we'll be busy.

It's getting overwhelming, I admit. I haven't felt well lately. It may just be the difference in pregnancies from one to the other. It probably has to do with having Braska around to play with, carry, deal with, and keep happy when I'd rather be napping. It's not some big problem, but it is interfering with life as I'd hoped it would be at this point in this pregnancy. I'm tempted to thin out our schedule a little just to keep caught up better, but I don't know if that would help or not. I go to the OB today for a regular check in. I'll let her know what's up, and she'll probably tell me it's just the way it is. But I'm just disappointed that I generally spend most of the day every day feeling tired and very achy. It's nothing that can't be dealt with, but it's still sometimes frustrating.

But time is flying, so we'll soon be to the next overwhelming stage of dealing with two kids out here in the open! Somehow, we'll figure it out. For now, I'll nap and rest when I can. I just miss having energy and actually *wanting* to do things outside the house.

So can someone go do some fun stuff and let me live vicariously through your experience?? Make it a good month, people!!