Moved

Well, I'm officially set up at vandeblog.com. So head over and check it out and make sure you're subscribed over there. (You know, if you're a subscriber.)

All the archives are over there, and I won't be posting here anymore.

Daniel update

Did I tell you Daniel's therapist is coming every two weeks now instead of once a month? Well she is, and she was here on Thursday. She's impressed with the progress he's made although, I think part of what she thinks was progress was really just that he was super tired last time she was here. I mean, he is definitely making progress, but he was not up to par at his first July appointment. Also, his caseworker okayed speech therapy starting at 9 months.

He rolls from front to back easily and often. The day before his appointment he started pulling his knees up under himself which is great (one step in a series of steps that lead to crawling.) And, he's rolled front to back! One time. In his crib, so soft surface probably made it easier.

He now naps with no swaddle and on his belly, but we still swaddle him to sleep at night. He's pretty vocal, and likes to "talk" to himself when he first wakes up in the morning. He smiles often, but he'll only laugh for Brian. And I think that's all that's new with Daniel these days.

First books

Good news! Shalini posted a survey about books, my very favorite things. So today I'm answering those questions and you don't have to listen to more ridiculous things my kids say!

First Book I Loved


A Little Princess by Frances Hodgson Burnett

This wasn't the first chapter book I read, but it is the first one I remember loving. I think I was 8 when I read it for the first time? Or 9 maybe? I still have my copy and you bet I'll be reading it to Kalena.

First Book I Hated


Anna Karenina by Leo Tolstoy

I'm not much of a book hater, and I'm not even sure that I actually hated this one, but I do remember being annoyed by the characters. In particular I felt like all Anna's problems were her own fault and I had no sympathy for her. However, I read this when I was 19 and I haven't read it since so my opinion could be totally different if I read it now. I didn't hate Wuthering Heights the first time I read that (at 17) but hated ALL the characters when I read it a few years ago. So.

First Series I Read


The Little House on the Prairie books by Laura Ingalls Wilder

I had read this whole series by the time I was 9 or 10, and I've read all the books many times. I love these books. I could probably have put them in the "first book I loved" category, but it seemed like cheating to put in a whole series. And how could I just pick one?

First Fantasy/Sci-Fi Book I Read


I'm putting two books down here because fantasy and sci-fi are very different!
Fantasy: The Lion, the Witch and the Wardrobe by C. S. Lewis

An excellent series.

Sci-Fi: Ender's Game

I think I was 12 the first time I read this book. I love it every time. Also, it's one of the few books that I recommend to basically everyone.

First Book That Made Me Cry From Laughing


Um, none? I rarely laugh until I cry and I've never read a book that funny.

First Young Adult Book I Read and Loved


Twilight.

I'm not going to apologize for liking it. Also, it was pretty much the first YA book I ever read, since I don't think anything was labeled Young Adult when I *was* a young adult.

First Horror Book I Read


The Shining by Stephen King

I can't guarantee that The Shining was *actually* the first horror book I read, but I can assure you that if it wasn't, something else by Stephen King was. I'm kind of a Stephen King fan. I've read many of his books.

First Book I Was Completely Obsessed With


I don't know! This seems like a horrible way to end this survey, but I tend not to obsess over things and I can't come up with a book I've obsessed over.

Your turn!

Almost there

Well, my lovely readers, I'm almost set up on my new blog! Very exciting! (For me. For you it's just Elsha rambling as usual.)

Anyway, still a few things to do, but it's getting there!

I know, I keep writing these!

I keep forgetting to put this on my other posts about Kalena:

She says she's "shooting flies" when she shoos them. As in, "Daddy! Shoot that fly away!"

On a completely unrelated note, do you know how exhausting it is to live without kitchen counters?  Exhausting.

4 year well visit

As you know, Kalena turned 4 in May. But because of the way I scheduled her well visit last year, she couldn't come in this year until July. Anyway, it was on Wednesday and here are her stats:

Height: 3 ft 6 inches
Weight: 38 lbs 9.6 oz

I would tell you the percentages, but I don't have them written down. Both still on the higher end, 80-90% or so. They also checked her eyes this visit which I'd been wondering about. Not her eyes in particular, just when they would do it. They used a chart with shapes and had her list the shapes instead of reading letters. (I'm curious how they'll check Daniel's eyes, since he obviously won't be listing shapes when he gets them checked in a couple months.)

I asked about her tonsils since they seem big to me, and we got a referral to an ENT. I lean toward wanting to get them out if they're big since I had to have mine out when I was 22 and it SUCKED. The pediatrician said her threshold is also fairly low because she had hers out at 16. Anyway, she did say that kids can grow out of oversized tonsils, usually by age 5 or 6, so the ENT might ask us to wait a year and see.

Anyway, that's about it. She's healthy happy as always!

I think I'd prefer butterscotch

Did I ever tell you about the time my grandma made my dad a peanut butter and butterscotch sandwich? Well, you may remember she was basically blind, and we had a Smucker's jar of butterscotch which looked a lot like a jar of jelly. So one day my grandma was making my dad lunch (which she insisted on doing) and she got out the butterscotch instead of the jelly. She realized partway through making it that it *wasn't* jelly but she served it to my dad anyway. And he ate it! Despite thinking it tasted funny. We've laughed it that story many times since then.

Fast forward to dinner time tonight. I asked Kalena if she'd like me to make her a sandwich and she told me she'd like a "peanut butter and jellyfish sandwich." Ahahaha! Yuck.

I guess he knows the rules?

Yesterday I was putting something away upstairs while the kids were playing downstairs (and Daniel was sleeping.) All of a sudden I hear Kalena start wailing. As I came down the stairs I asked what happened and she informed me that Will had thrown the egg (a wooden toy egg) at her face. So I continued toward the room they'd been playing in and in my best stern-mom voice I started, "Will..." At which point I heard his little toddler voice say from the dining room, "I sittin' in time out."

Yep, as soon as Kalena had started crying he'd trotted himself over to the time out chair and put himself in time out. That kid man. He always knows just when to be cute.

Kalena tidbits

Yesterday we talked about Will, so today we'll talk about Kalena.

One of my favorite things is that she has picked up the phrase, "Hey! What's the big idea?!" and uses it often.

A while back she started asking for "a big squishy hug" before bed (meaning a hug where you squish her) which was amusing on its own because she made squishing motions with her fingers and scrunched up her face when she did it. But THEN she started calling it "a big squishy pizza hug" and now it just makes me laugh. Also, sometimes after the hug she'll ask, "Was that a big pizza hug?"Why she added the word pizza in there I'll never know, but she does it every time.

She still says "last-er-day" for anything before today. I think I mentioned that before, but it's still one of my very favorites.

She calls her forehead her "fort-head." Always makes me imagine her having a fortress in her head.

And I'm sure I'll think of something else as soon as I publish this.

More of Will

A few more tidbits about Will.

He says many words as if they begin with an "F." Trucks are "frucks" his crib is his "frib" and, of course, his crab shirt is his "frab" shirt. Also, the other day he told me he was "just hiding in the floset." I never want this to stop.

If you ask him what a cat says he'll tell you, "Mee Mow"

He knows he's not a baby. (We already talked about that.) BUT. He also knows (um, maybe because we've been telling him this repeatedly) that "big boys" use a potty instead of diapers. Since he would like to never use the potty ever, thank you very much, he insists that he's a "little boy." We often have this conversation:
Me: Will, are you a baby?
Will (laughing): No, I not a baby!
Me: Oh, so you're a big boy then?
Will: No, I not a big boy; I a wittle boy!

He's pretty much the cutest.

How's this for creepy?

On and off over the past several years we've had a bat living at our house. One summer it lived between the screen and the glass of one bedroom window (NEVER opened that window.) Last year it lived in the eaves above the front porch. We did some things that theoretically got rid of it, but this summer it came back. (Do you like how I just *assume* it's been the same bat every year? I prefer to think we have ONE bat that really likes the house, rather than having a house that bats seek out to live in.)

Anyway, this summer it was back. And you can tell it came back because you see the bat poop on the front porch. We rarely see it, but the other day I noticed it hanging up there- CREEPY. It was still there the next day. And the next. So today Brian decided to try to scare it away. He was throwing a tennis ball at it, and nothing. Hitting the roof next to the bat and NADA. But he was a man on a mission, so he got out the hose. (I was safely inside while all this was going on.) He starts spraying it with the hose and finally this bat falls down and it's ALREADY DEAD.

YOU GUYS. It was hanging up there DEAD!! Ugh. I'm creeped out just thinking about it. And now you can all go to bed thinking about creepy dead bats. You're welcome.

Nosey Nancy: Books edition

I'm blatantly stealing this "Nosey Nancy" concept from K. Just so you know.

I grew up in a household with many, many books. If fact, my parents had a library put in when I was a kid (and someday when I get this blog moved I'll post pictures of it.) My mom and I inventoried the library last summer and they have somewhere in the neighborhood of 1,200 books. That doesn't include the kids books. Brian and I don't have nearly that many, but we still have lots. Something like 300? Ish? And about 150 kids books.

I tend to re-read books which is why I buy them instead of just using the library. (I also use the library.) I don't have any kind of e-reader because I'm not a huge fan. I've used one, but I prefer a book. I love having a big selection of kids books because the kids REALLY like to read and I want a variety to choose from. (Again, we use the library, but I still like to own my favorites.) I probably buy more books than I should. Anyway, here are my questions for you:

1) How many books do you own, and how many are kids books?
2) Do you have an e-reader (and what kind)? Do you prefer that or actual books?
3) Are you a re-reader?
4) Do you prefer to buy or borrow books?

Let's hear it!

Toy storage

A while back I talked about reorganizing the kids' toys. What we did at the time was the split the toys into thirds, leaving one third out and two thirds stored at any given time. We tried to split them so that each third had a similar selection of toys, for instance: a set of wood blocks in one, soft blocks in one, and Mega Bloks in one. The idea was that every couple weeks we'd rotate the toys and the kid would have "new" toys to play with.

It worked well for a while. And then we got lazy. So instead of rotating every two or three weeks, we were leaving the same toys out for more like two months. Pretty soon both kids knew that there were other toys put away and they wanted THOSE toys out, but Brian and I didn't want to deal with putting all the other stuff away (mostly we didn't want to deal with FINDING all the other stuff.) Anyway, it wasn't working anymore. Also, it had gotten to the point that all they did was dump ALL the toys and leave them. So we changed it again!

Here's how we're doing it now: All the toys are available to the kids, but they are split up into tupperware bins. They're split specifically enough that getting out a bin basically means getting out one "set" of things. For instance, there's a bin of blocks, one of dinosaurs, one of ponies (my little pony and others) and so on. They're each allowed one bin at a time, and they have to pick it all up before they get out something different.

You guys, it's SO GREAT. They clean up! They play with everything! They don't complain that they want different toys! They even work together to play! If one of them wants to play with one of the road sets (we have a couple) then the other one gets out the bin of cars. It's seriously awesome. Of course, it only works because we have a giant walk-in closet in the playroom for all these bins to go it, but hey! It works! (Also, seeing ALL the toys out at once reassured me that we don't have as many toys as I thought we did.)

Anyway, I'm sure you're thrilled to know how we store our toys. How do you do it at your house?

Quirky things

Just a couple quirky things about children with Down syndrome that I wanted to share. I don't know if all of these things have been studied thoroughly, but we did talk about them at the Sie Center, and they're the experts!

1) Children with Down syndrome tend to be very visual learners and, as a result, many read earlier than their typical peers.

2) Children with Down syndrome (I think this is babies in particular but I'm not sure) spend more time than average looking at faces. I found this especially interesting since studies show that children with Autism spend less time than average looking at faces.

3) Children with Down syndrome are more likely to be left handed. Random, huh? I'm very interested to see if Daniel turns out to be left handed since my mother in law and Kalena are lefties.

And now you've learned something new for today.

Uh, yeah

I was GOING to post some more pictures yesterday, but guess what?? I'm out of the free storage space blogger provides! Which means I have to make some choices about this blog business. Don't worry, I'm not quitting. (I'm much too amused by my own posts to quit.) But I may be moving. And *probably* paying for storage space somewhere. And if I'm going to pay for it then I want to make sure I'm getting what I want.

Anyway. The whole point of this is that I'm not going to be posting pictures until I get things figured out. And I'll let you know when that happens.

Glad I had my camera

The kids got out the dress up clothes today. Will opted for silver satin gloves and a hard hat.

Pretty much my favorite outfit ever.

Some pictures

I didn't take many pictures while Kari and Jonathan were here, but I did get some of Amelia's birthday party, so here you go.

Daniel hanging out with Aunt Kari. She pretty much wanted to trade babies with me because Daniel is so awesome. Okay, it was because I've been blessed with a great sleeper and not so much, in her house.

A family picture! I would be more excited except they go get their family pictures done every couple months. So they always have very nice looking, current family pictures. We have done formal family pictures 3 times-- right after Kalena was born, right after Will was born, and right after Daniel was born. I'm fat in all of them. (No seriously, all three times it was less than a month after I'd had a baby.) Also I didn't realize Amelia was making a face or I'd have retaken it.

Kari and Amelia with some puzzles from my kids. Complete with glare on the glass door behind them. Because I am an EXCELLENT photographer.

Amelia blowing out candles. She turned 3, but we used candles for the antennae so she only got 2. Good thing she has no idea that the number of candles should be the age she's turning.

There you have it. We also went to the dinosaur museum but I refused to take any pictures there, because I discovered (last time I printed pictures) that I take pictures EVERY TIME we go there with cousins. NO MORE! (Even though they have a new "ice age" exhibit. (The time period, not the movie.) And I sort of wanted to take some pictures.) 

The diving board

If you have been around awhile, you may remember that last year Kalena wouldn't jump off the diving board on the last day of swim lessons. (Because of the dinosaur.) So this year she kept telling me that she was going to be brave and jump off the diving board all by herself. Every day she asked if they would be jumping off the diving board that day. Every day I assured her that they would be jumping on the last day, but randomly on Tuesday (2 lessons before the last) they went anyway! I'm guessing they did it early because the screamer twins weren't there (in fact, Monday was the last day they showed up.)

They each got 3 turns, and on the third time she actually jumped! (The other two times they dropped her in.) It was fun to see. Unfortunately I didn't have my camera and Brian wasn't there (he was planning to come on the last day!) He *did* come to watch on the last day and they *did* go on the diving board again, but she wouldn't jump. But he got a picture, so just pretend like they didn't have to throw her in after this:

And that concludes swim lessons for another year.

4 months

Daniel had his 4 month well visit yesterday. (Side note, how is he 4 months old already?!) He is healthy and growing.

Here are the stats:
Weight: 14 lbs 9 1/2 oz
Height: 25 inches
Head size: 16 1/4 inches

I think I mentioned before that there are different growth charts for kids with Down syndrome. This is because kids with Down syndrome tend to be shorter than typical children and tend to have smaller than average heads. I got a copy of the Down syndrome growth charts from the Sie Center, so I'm hand charting on those (and my pediatrician is hand charting on her own copy) but the printouts from the pediatrician's office will continue to be on the regular growth charts. That means I can compare! Fun game for me! Here's how it compares this time around:

Weight:        43%     75%
Height:         53%      75%
Head size:    24%     75%

That's typical growth charts on the left, Down syndrome growth charts on the right. There's a little more guesstimating on the Down syndrome charts since I did them by hand, but he's right on the same growth curve as he was at the Sie Center at 3 months. So, he's average to small compared to typical kids, and relatively big compared to other kids with Down syndrome.

He's actually about the same size Will was at this age, you know, minus the giant sized head. The pediatrician even commented on how much Daniel looks like and is built like Will.

Giant head or not, he's still a cutie.

Happy birthday Amelia!

Kari and Jonathan were visiting this week (but left this morning. Sad.) So while they were here we celebrated Amelia's 3rd birthday (which is actually next month.) I asked Kari if Amelia wanted any special kind of cake and she thought Amelia would like a "Very Hungry Caterpillar" cake so I obliged.

Amelia even knew what it was! After I held the book up next to it and pointed to the picture! 

I didn't turn out exactly like I wanted but I was pretty much just winging it so that was alright. Also it tasted good. I'll pretty much never argue with cake.

Conversations with Will

The other day at dinner Will requested more butter for his roll (because he'd licked all the butter off.) When Brian told him no Will pointed his finger and said, "You not talk like that!"

This morning when I asked Will if he wanted to go to the splash park to day he said, "Yes. Needa fight the water." (He totally did, I'll post pictures another day.)

My mom got him out of bed the other day and the first thing he did was tell her, "Need moofin" because we'd had blueberry muffins a couple days before. (He LOVED them and ate like half the batch.) But they were gone so my mom said, "I didn't make muffins today, I made a frittata." To which he responded, "No tata! Need moofin!" as if he actually knew what a frittata was. He ate it anyway, because the kid is addicted to eggs.

And last, (I know this is not a conversation) he has started saying "yeps" and "nopes" all the time. Always plural.

This kid man. He makes me laugh.

Danny and the dinosaur

Remember when I posted pictures of the other kids in their dinosaur shirts? Well Daniel fits into his onesie now!

We start the dinosaur obsession early around here. Also, I don't intend to call Daniel Danny, but whenever I dress him in dinosaur stuff it makes me think of the "Danny and the Dinosaur" books.

Swim lessons

We're getting to the end of Kalena's swim lessons this year, so here's a little list of the things I'm liking and disliking this time around.

Things I like:
1) The frequency. Lessons at the local pool are 4 days a week and you sign up for 2 week sessions. It's relatively easy to find a 2 week block during the summer with no travel, so we can make it to all the lessons. Plus I think it's helpful for kids Kalena's age to practice every day so they don't forget.

2) The time. (We picked the time, so it seems pretty obvious that I would like it, but I'm still going to explain why.) Kalena's class is in the 12:10 to 12:45 time slot. This means we come home immediately after lessons, feed the kids, and then they go down for naps and generally sleep until 4 or 4:30. Also, it's usually blazing hot by 12:10, so the kids are eager to go.

3) Class size. The classes are all taught by lifeguards and the younger classes are usually about 5 kids each. Big enough for games, small enough for individual attention.


Things I don't like:
1) There is a set of twins in Kalena's class who both HATE swim lessons. Hate the water, hate getting in, hate the teacher, hate everything. And they demonstrate their hatred by SCREAMING for the whole 35 minutes. I'm not exaggerating. My big issue with this is that in the class description it specifically says that this class is for kids under age 5 who are COMFORTABLE in the water. These kids are obviously not. So either they need to be in a different class (usually with kids like this the lifeguard will move them down a class after the first day-- not sure why that didn't happen here) or they shouldn't be in lessons yet. I'm also unclear as to why their mother continues to make them go.

2) The parents and kids who sit around after the previous lesson sessions are over. Back in the day, when I took swim lessons at this pool, parents didn't come in at all. They called classes at a side gate and then parents could watch from a set of bleachers outside the fence. Now, parents bring their kids in and sit and watch the lessons (which is fine.) But then! Instead of leaving after lessons, some parents just hang out. They feed their kids snacks, and let them play on iphones or whatever else. They can't get in the pool while lessons are going on, and the pool closes (and they kick everyone out) from 12:45 to 1:30, so it's not like they can just stay until regular pool hours. GO HOME PEOPLE.

And what I've learned from this is that it's PEOPLE I dislike, not actually anything about the lessons.

Kalena is skeptical of the picture taking.

Splash park fun

Here are Will's instructions for how to have fun at a splash park:

Step One: Fill bucket with water. (Okay, maybe technically step one is purchase a bucket from the $1 bin at Target, but I don't have a picture of that.)

Step Two: Place one foot in bucket.

Step Three: Place second foot in bucket.

Step Four: Stand in bucket.

Then enjoy!

Sizing

My sister has two little girls, and when I say little girls I mean little, teeny tiny, pint sized girls. Here's a picture to demonstrate:

This is Daniel with his cousin Addilyn. Addilyn is five months older than Daniel! She's itsy bitsy! Makes me laugh.

Anyway, they've been enjoying checking each other out.

Kalena tidbits

For today, you get to hear a little about Kalena these days.

First of all, she gets herself dressed. This is both awesome and hilarious. Awesome for the obvious reason-- I don't have to dress her! She even picks her outfits the night before and set them out. Hilarious because of her sense of style. In her mind, for something to go together it needs to be The Same. For example, a pink shirt needs a pink skirt. A purple shirt needs purple shorts. And a striped shirt needs striped shorts. The stripes and stripes combo is her favorite. Like so:

She bosses Will around like he's her own personal man-servent. All day every day I hear things like, "Will! Come here and turn the light on for me!" or "Mister! I need your help!" or (to me) "Mister won't do this for me!" (in a pleading voice, as if I ought to sympathize greatly with his ignoring her.) She's polite, so it makes me laugh, and mostly he is very compliant which just makes it that much funnier.

She is very interested in words, and will often point at words and ask what they say. She's especially interested in rhyming words, although she really has no idea how they work. She just says two words to me and asks if they rhyme. Then when I (inevitably) say no, she asks what does rhyme with them.

And, as always, she loves baby Daniel and always wants to give him hugs, kisses, and pats.

(And, of course, she always wants to keep him comfy.)

ACK!

Well. This was quite the evening.

After we got the kids down for the night, Brian and I were in our room reading. I heard a noise at our door so I said, "Kalena?" since she gets out of bed approximately one million times before she actually goes to sleep. She didn't respond so I figured she had gone back to her room, knowing she wasn't supposed to be up. But then? Then we heard Will's voice. Will, who sleeps in a crib. Will, who we had JUST put in a crib, not 15 minutes earlier. Brian got up to see what was going on and sure enough, there was Will running around upstairs. He was *quite* pleased with himself. We confirmed with my mom that she hadn't gotten him out of the crib. WE HAVE A CLIMBER.

Kalena never once climbed out of her crib. She climbed INTO it on more than one occasion, but never out of it. I am so NOT ready to move Will to a toddler bed, but WHAT DO WE DOOOOO? For now we've moved his crib and we're holding out hope that he won't do it again. See, his crib was pushed up against a bed, so he climbed out onto the bed where he could get down easily. We moved it away from the bed, so I'm HOPING that he won't climb out if he'd just have to fall all the way to the floor. Hopeful even that he used the bed as leverage and *can't* get out of his crib without it to step up on.

Anyway, wish us luck! I'll keep you updated for sure.

Quickly

I'm about ready to go to bed here (at 8:30 pm, yes, my life is thrilling) so just a picture to tide you over until tomorrow.

His shirt has googly eyes! And he refers to it as his "frab" shirt, which is pretty much my favorite.

Dressed up

I dressed Daniel in this tie onesie for church on Sunday, but then he fell asleep just before so he didn't go. (Brian was staying home with a cold anyway, we didn't just leave him there alone, sheesh.)

He's pretty pleased with how good he looks.

Also, it's so hot here his hair is wilting! Actually, I think it's just getting long enough that it falls to one side. I may have to cut it so it sticks up again.

It's a regular occurrence

One of the things I love about having a girl and boys is that we have a huge variety of toys. I mean, we try not to buy only stereotypically girl toys for Kalena, or boy toys for Will, but sometimes it doesn't even *occur* to me that Kalena or Will might like a certain toy. 

For instance, I don't know that I would ever have thought to buy Will a tea set. Fortunately Kalena picked one out and now Will enjoys it just as much as she does. Without her I might never have seen this adorable sight: Will, dressed as a dragon, playing tea party.

He wanted me to know that this is the sugar bowl. 

On an unrelated note, we are TOTALLY getting our money's worth out of this dragon costume. He's worn it for Halloween two years in a row, and he wears it several times a week. (In the heat even! How does he stand it?!)

Cutest car in the history of the world

When my mom asked what Will wanted for his birthday I told her he was getting plenty of things already and asked if she'd pay to have his stitchery framed instead. (You know, the name/birthday stitchery I finally finished after he turned two.) So she did and that was that.

BUT. She was browsing the other day at a store we'd never been to and found something she was pretty sure Will shouldn't be living without. A Buzz Lightyear car. Or maybe it's a rocket ship. Either way, it's awesome.

Will thinks so too. 

Blogging binge

So my friend Laura mentioned that she was going to try blogging every day in July and asked if anyone wanted to join her. I said I might, since I haven't been blogging as much as I want lately. And she posted her first Blogging Binge post today and linked to other participants, including me! Now I'm obligated.

Let's start off with a smiling Daniel. I still can't manage to get a good smiling shot, but Brian has taken a couple and here's one of them.

Daniel isn't a particularly happy baby, he's mostly mellow. (Kalena was a happy baby, MAN.) But when he smiles, his whole face lights up. It's awesome. 

Sie Center: Day 2

So, second day we met with the nurse practitioner and the physical therapist. They took Daniel's measurements: 12 lbs 15.9 oz, 24 inches long and his head is 15.75 inches around. These measurements put him squarely at the 75th percentile for kids with Down syndrome. (And after his 4 month appointment in July I'll tell you how he compares to typical kids.) The nurse practitioner talked to us about some of the same things as the geneticist, about the different conditions he's at risk for, when we should do testing, etc. She gave us a schedule so we know which tests we should be doing and when. We discussed his eating and sleeping habits and health in general. She gave us a fax number to send results when we do any testing. (Apparently they keep up to date records on all the kids, even if they're only seeing them at the Sie Center once or twice a year.)

After that we met with the physical therapist. This lady is The Expert on motor skill in kids with Down syndrome. She's the author of a book on gross motor skills  and it is obvious that she loves her job. (Incidentally, I ordered that book a while back, so it was extra fun to meet her.) She was impressed by what Daniel is doing so far and excited to hear how motivated he is when it comes to movement. She showed us lots of things we can be doing with him, which we've been working into our daily routine. For instance, typical babies naturally sit up very straight. Babies with Down syndrome tend to slouch. A lot. So she gave us several sitting positions to hold him in that help him work on keeping his back straight while he sits. Also, after we told her that we had a copy of her book she showed us specific sections we could work on with him. Anyway, it was lots of fun.

They also have a speech therapist, who we didn't meet with. It seems obvious that a 3 month old wouldn't need a speech therapist. BUT. They actually recommend kids with Down syndrome start speech therapy at 9 months! Obviously they don't expect him to start talking at 9 months (or even soon after that) but there are different things the therapist can do to help him get ready to talk. They want to be proactive about it, instead of waiting until a kid is 3 years old and still not talking at all. So that's definitely something we'll be discussing with our case manager here.

Last thing on Thursday morning we met with a social worker. She gave us information on the various government benefits Daniel is eligible for (most of which we already knew about.) Good stuff though.

Oh, and one thing I forgot to mention from our meeting with the geneticist. With very rare exceptions, males with Down syndrome are sterile. There have been a few reported cases of men with Down syndrome fathering a child, but it's rare enough to be reported to the experts.

And I believe that concludes my summary. Questions?

The Sie Center: Day 1

Typical visits to the Sie Center are set up so that you first meet with the doctor and team of therapists and then with the geneticist so the geneticist can discuss the doctor's notes with you. However, because we were driving in from out of town, our visit ended up backward. They worked out the appointments so we could drive in Wednesday for the first one and then have the second one first thing Thursday morning and drive home. Anyway, we saw the geneticist first so that's what I'll write about first!

Most of what the geneticist told us we already knew. But it was still nice to hear it "officially." Here's what we discussed:

1) There are three types of Down syndrome.

• Nondisjunction. Occurs when either the egg or sperm has 2 copies of chromosome 21. When fertilization occurs the extra chromosome causes Down syndrome. This accounts for 95% of all cases of Down syndrome
• Translocation. Occurs when a part of chromosome 21 breaks off during cell division and becomes attached to another chromosome. This accounts for 3-4% of cases of Down syndrome.
• Mosaicism. Occurs when the error in cell division happens *after* fertilization. This causes some cells to have a third copy of chromosome 21 while other cells are normal. This accounts for 1-2% of cases of Down syndrome.

Daniel has nondisjunction Down syndrome. We knew based on the karyotype results that it wasn't mosaicism, and we were fairly certain it was nondisjunction but we wanted to hear that for sure. It doesn't matter in terms of his development, but if it were translocation my odds of having another baby with Down syndrome jump to 1 in 10. That would play a HUGE part in our decision to have/not have more kids.

2) In any case, my odds of having another baby with Down syndrome are still raised. Based solely on my age, my risk is about 1 in 1000. Now, because I've had a baby with Down syndrome, my odds are 1 in 100. However, the odds are not higher for my siblings or my children.

3) People with Down syndrome are more likely to develop autoimmune problems including thyroid problems, diabetes, and celiac disease. They are also more likely to develop leukemia, but the chances of that are still low. Vision problems are common (60% of children with Down syndrome) as is hearing loss (75% of children with Ds.) So far Daniel has no problems with any of these things, but we'll be testing regularly. 

4) Physical characteristics are not an indicator of the degree of intellectual disability he'll have.

We spent an hour or so with the geneticist, his assistant, and a resident who was sitting in. They were great. They answered all our questions and were not at all patronizing or condescending (two things I hate.) And there you have it! Next up, our visit with the doctor and therapist.

Pictures I didn't stage

If you follow me on Twitter, you may have already seen this one. If not, Look! It's Mrs. Nesbitt! Apparently this really *is* what happens when a girl gets ahold of Buzz. (To be fair, Will was just as involved in this tea party as Kalena was. But it was Kalena who actually set him up.)

The other morning I put Daniel on his mat to play (on his back) while I went up to get some laundry. I went in to check on him after I put it in the washer because he wasn't making any noise and this is what I found:

Rolled over to his belly and sound asleep. He slept like that for 30 minutes or so, and probably would have slept longer if Kalena hadn't woken him up.

I was trying to get him to nap this afternoon in the swing (after the crib failed) but he was having none of it. He kept sticking his foot out the side though. It was pretty awesome.

Okay, I know this one is a terrible picture but it's the only one I got. Daniel is reaching and grabbing! Yay for milestones!

And one last picture. Daniel face! 

You're welcome.

Hindsight

As you know, we didn't know Daniel had Down syndrome before he was born. We didn't do any testing, but we did do the 20 week ultrasound and nothing looked out of the ordinary. However, looking back, there was one obvious sign that something was different. His movements.

It took longer for me to feel him move than I expected for a third child. It also took longer to start feeling him regularly. Then once I was feeling him every day, and *I* could sometimes see the movements from the outside, nobody else ever saw them. As many times as I put Brian's hand on my belly, he didn't feel any obvious movements. Daniel never kicked me hard enough that it hurt. He never pushed up into my ribs enough to make me uncomfortable. He didn't ever make those huge, rolling, there's an alien in my belly type movements.

I wondered about all that. I didn't really worry though. I was feeling him often, so I just figured he was mellower or it was different because it was a third pregnancy. Looking back now it's obvious to me that his low muscle tone is what made the difference. I probably wouldn't have thought about it at all if it was my first or second kid. Anyway. Just something I noticed that made sense once he was here. I imagine I'll be hyper aware of this if I'm ever pregnant again.

10 things about me

We're back from Denver! Okay, we were back on Thursday. The visit to the Sie Center was excellent, and I'll write it up soon (I want to go over the notes first.) So today, 10 things you might not know about me.

1) I'll make assumptions about you based on the books you keep in your house. If you have everything on a reader, I'm gonna need to see that. So I can make assumptions about you. (I find home libraries fascinating.)

2) I don't wear shorts. Capris maybe, but not shorts. Last time I wore shorts was when we were in Hawaii in 2008.

3)  I love shopping for cute shoes. However, I wear the same few pairs of shoes all the time. It took YEARS for me to admit this to myself and stop buying shoes I don't wear.

4) I have a hard time just sitting and watching TV. Even if I'm watching a movie I need to be doing something else. Internet surfing, stitching, scrapbooking, SOMETHING.

5) Typing that last one reminded me of this one: I have old lady hobbies. I cross stitch. I quilt. I make scrapbooks. I bake. I just need to learn how to knit and/or crochet and I'm all set! (I really would like to learn that.)

6) I've never dyed my hair, and I probably never will. There are 2 reasons for this: 1) I really like my natural color and 2) I'm WAY too lazy to keep it maintained.

7) I like the way my toes look pedicured, but I'm SUPER ticklish, so I'm not I huge fan of the actual pedicure process.

8) I am good at baking desserts. I make yummy cookies, cake, pie, and brownies. But I can't bake bread to save my life.

9) I am much more productive when I get up in the morning and put on jeans instead of yoga pants. I guess yoga pants are just too comfortable.

10) Today is our sixth anniversary. We celebrated by going to a matinee. Then Brian went golfing with my dad. We are the most boring people ever.

Sie Center

On Wednesday, Brian and I are taking Daniel up to the Sie Center for Down Syndrome in Denver. We're scheduled to meet with a team of therapists who'll assess Daniel, as well as with a geneticist. I'm not sure he'll be able to tell us more than we already know, but maybe! The Sie Center is specifically for children (up to age 21) with Down syndrome (as you may have gathered from the name.) It's comprehensive care, so it's not just for kids who have medical issues associated with Down syndrome. And apparently it's the only clinic like this in the country. That's what they tell me anyway.

While they aren't going to replace his care here (pediatrician, therapist, etc) it'll be nice to have Daniel evaluated by a team so familiar with Down syndrome. Our pediatrician told us she has about 1000 patients. 2 of them have Down syndrome. Including Daniel. Even his therapist, who only sees kids who are developmentally delayed, only sees 3 kids with Ds. The team at the Sie Center only sees kids with Down syndrome. That's their normal. They're the experts.

Anyway, I'm very interested to see what they have to tell us. And, as always, I'll keep you updated.

Daniel's mostly excited to show off his awesome hair.

Feeling sappy

Y'all, it melts my heart to see how much Kalena loves this little guy.

Also, when did she get old enough to act goofy for a picture on purpose?!

No more Mr. Baby

As you probably already know, we have many nicknames for Will. Buster, Buster Brown, Mister Buster, just plain Mister, and the list goes on. My mom though, liked to call him Mister Baby.

While I was pregnant my sister Kari kept insisting that she needed to quit since there would be another baby around soon. But my mom kept saying that Will was always going to be Mister Baby to her. And for a while he was.

Then the other night when I put him to bed I said, "Goodnight Mister Baby." And Will grinned and said, "No, I not baby Daniel!" And that was that. He won't let anyone call him Mister Baby anymore.

And really, he's not a baby anymore.

Don't worry, Daniel wasn't in any danger of falling off the couch here. Will doesn't do the best job of holding him up, he mostly just lets Daniel lay across his lap. (That's Will's "I'm done" face, by the way.) It's a good thing Daniel is around to be the baby now.

The life

The kids had their snack outside on the deck this morning. As they ate yogurt and pulled up other chairs to rest their feet, Kalena sighed and said, "This is the life." And then Will (always the imitator) also sighed and said, "Dis da life."

I think they're right.

Always with the pursed lips

I have many, MANY pictures of Daniel where he looks like he's puckered up for a kiss. If you'll recall, Will used to do that too. See:

Will in November 2010

Daniel in May 2012 

Rolling with it

Daniel rolled from back to front today!

Now, this isn't the first time he's gotten from back to belly. On two other occasions he's flipped himself, and I would have counted that as rolling without his physical therapist's description of the difference. When a baby rolls back to front, he should draw his knees up, twisting at the waist first then twisting his torso and finally rolling the shoulders.

However, a baby with low muscle tone (like Daniel) might not engage the muscles like he ought to. What Daniel was doing before was arching his back WAY far (while laying sort of on his side) and craning his head around as if he were trying to look at the top of his own head. I wish I had a picture of him doing this, but I don't. Anyway, he would end up in sort of a C shape, with his belly way out. From there, a weight shift would cause his whole body to go over. So he ended up on his tummy, but without having used muscles to get there.

When I mentioned to his physical therapist that he had done that she quickly showed us some things to do to help him learn the right way to roll. From then on, anytime he started in on the arching, trying to get over, we would work with him on doing it right. And it worked! YAY! (Only once so far but still. I'm excited.)

He's also been smiling for the last couple weeks. It takes a little effort to get a smile out of him, and I haven't caught a really good one on camera yet, so this one will have to do for now.

Wide awake.

Kalena doesn't understand that when people are sleeping you should let them sleep. I think her life motto is: If I'm up, you should be up. It isn't so bad when she's waking up the adults, but she has recently taking to waking her brothers. On purpose. While I think it is adorable that she wants them to be up so she has playmates, it is bad news because these boys need their sleep! She woke Daniel up half an hour into his morning nap today. His morning nap which normally lasts at least 2 hours. I spent the rest of the day trying to get an overtired baby back onto his normal schedule.

Her reason for waking him up? "I just wanted to keep him comfy." That's her four-year-old version of "keep him company." Cute, yes, but maybe let's confine the cute to waking hours from now on, hmm?

Zoo!

We went to Hogle Zoo this weekend, in Salt Lake. The kids were SO excited to see all the animals.

Will especially loved seeing animals swim. And he was very insistent on wearing his hat.

Daniel slept for most of the day in the Ergo. It was HOT for both of us, but it made it easy to carry him at least. That's a walrus skull I'm standing next to, in case you were wondering.

Brian and Will. Will's hat size says 2T-4T, but it's still a little small for him.

He was SO THRILLED to see that crocodile. He's convinced that every body of water ever contains either crocodiles or sharks. 

Kalena refused to cooperate for most of my pictures, but here's one of her with my dad checking out the giraffes.

And one more of Daniel! His little romper was a hand-me-down from my sister and just right for this outing. (It says "zoo crew" if you can't read it.) 

Kalena loved the whole trip and asked if we could stay forever. She settled for going back some other time.

No more nursing

Well, Daniel is done nursing.

When Kalena was born, nursing didn't go so well. Not that she didn't want to, on the contrary, she nursed all the time. A couple weeks in I started worrying that I wasn't making enough milk because she wanted to nurse SO much. She would spend 30 or 40 minutes nursing and then be hungry again 30 minutes after she had finished. (And she also took a pacifier, so no, she wasn't just nursing to soothe.) But do you know what you find when you google "low milk supply"? Reassurance that you probably make enough milk. Encouragement to feed on demand. Statements that babies want to eat often. Every pro-breastfeeding site I read made it clear that *true* low supply is REALLY RARE and this was all in my head! Okay, no site came out and said that, but it was certainly the impression I got. The implication was, if breastfeeding wasn't working, it was because I wasn't trying hard enough.

Every site encouraged nursing more often, and discouraged bottles and pacifiers. A few sites recommended pumping after feedings to increase supply but all warned that how much milk you get when you pump doesn't indicate how much milk you're making. Well. I nursed constantly. I pumped after every feeding (and got essentially nothing, by the way.) I gave her no formula. That went on for 6 weeks and then I had to go back to work. At that point we had to start on formula because I had no pumped milk to leave at home. But I still pumped at work, every 2 hours for 20 minutes. And you know what I discovered? In all that pumping I made enough milk for ONE feeding. Still, I continued to nurse when I was at home. I co-slept with her and let her nurse all night. It didn't take long before she preferred a bottle though, and I got less and less when I pumped at work. I gave it up altogether around 4 months.

When Will came along I was ready. I started pumping right away instead of waiting until my milk supply was "established." I bought fenugreek. And when he was still obviously hungry after several feedings in a row? I supplemented with either pumped milk or formula. And I didn't feel bad about it. Every time he had a growth spurt I had to take fenugreek and add pumping sessions and supplement. It would take my body a few days to catch up, but it was working. He nursed for 13 months and then weaned himself.

Then Daniel was born. He couldn't latch, so for the first 24 hours he got formula and I thought I might not get to nurse him at all. Based on my experience pumping for Kalena I knew I wouldn't be able to pump exclusively for him. Fortunately, a good lactation consultant and nipple shields got him nursing on day two. He was in the NICU which meant supplementing after every feeding. Once he was home I switched to only supplementing when he still seemed hungry. Unfortunately, he didn't gain weight on that plan. Back to supplementing every time.

I pumped, and took fenugreek and milk rich, and drank lots of water, and nursed on demand. But his low muscle tone means a weaker suck and tiring more quickly. By 8 weeks I knew nursing wouldn't last much longer, and by about a week ago he developed an obvious preference for bottles. I'd spend several minutes trying to get him to latch only to have him quit after a minute or so. So we're done. I've successfully nursed a child for more than a year and I made every effort and more this time around. It just wasn't going to happen. I did my best, and I'm glad he got to nurse at all.

Birthday time

Brian's parents came down last weekend so we could celebrate the kids' birthdays. (Well, Kalena's birthday and Will's half birthday. I think I've discussed that here before.) Anyway, it was a good time.

Kalena with one of her dinosaur puzzles.

Will with his two favorite gifts: Rex (from Brian's parents) and Buzz Lightyear (from us.)

He insisted on sleeping with them both (of course) and apparently in the morning when Brian got him out of bed he gathered them up with his other huge dinosaur and his bear and said, "Love all dem!" I've never seen him so excited as when he was opening those gifts.

I haven't taken any pictures of Kalena with her gift from my parents-- a bike. I need to though, because this bike makes me laugh every time I see it. Brian and my dad took her to the store to pick one out and she picked a shark bike. It's awesomely hilarious and it has a matching helmet. Definitely need some pictures.

And here's Daniel, dressed up in overalls for the party.

He slept through the whole thing.