Big shoes to fill

Will found his grandpa's shoes this afternoon.

Looks like he's got a little growing to do.

Brown sugar

This morning I was nursing Daniel when Kalena ran in to the room yelling, "Will's dumping out the sugar!" And my first thought was, "I hope that statement is not accurate." (Spoiler: it was accurate.)

The awesomest part was that the room I was in was pretty much the end of the trail, so there was just more and more sugar as I followed it around. That first picture was the last thing I found. That's about a half a bag of brown sugar right there. At least the kids hadn't walked around in it.

Off the oxygen!

As of yesterday Daniel is off oxygen! Which means pictures of his sweet face with no tubes.

Also, Cat in the Hat onesie!

Information overload

Down syndrome is the most common chromosomal abnormality, occurring once in every 690 live births. This means lots of available information and resources. Before we even left the hospital we had been referred to Mile High Down Syndrome Association, referred to a pediatric audiologist, and set up with an early intervention coordinator. At Daniel's first pediatrician's appointment we got a referral for a pediatric ophthalmologist along with a list of common health concerns and a timetable for testing for them.

MHDSA has been GREAT. We got a call from their family outreach coordinator just a few days after we were referred. She offered us their welcome package, to put us on a mailing list, to put us on an e-mail list, and a "first call" contact in my area. (Yes, yes and yes please!) I've already read the information book from the welcome package. 

See, I'm sort of an information junkie. I read. I research. The engineer in me wants numbers and data and statistics. And the mother in me wants to hear everyone else's stories about what it's like to raise a child with Down syndrome.

Anyway, there's a point to all this. For those of you who have contacts for me or other info, I want it, I do. But I'm a little overwhelmed with all the info I'm currently making my way through, especially since it turns out I also have a newborn. (Crazy, right?) So hang on to the phone numbers and e-mails addresses and such for me. I'm sure I'll be asking for them soon enough.



P.S. The love and support from everyone, both in real life and online, has been amazing. You guys are the best.

Test time

Daniel had his oxygen test on Friday. Here he is hooked up to the saturation monitor:

See that 96 on there? That's his saturation percent (and that's good, if you're wondering.) So HOPEFULLY when the pediatrician calls it will be to tell me to we're done with the oxygen. 

By the way, have I ever mentioned here how much I LOVE our pediatrician? Well, I love her. A LOT. We got put with her by default when we moved here-- she was the only doctor in the practice taking new patients. She's been great with Will and Kalena, but since Daniel was born she's been even better. She hasn't been able to see him yet (she was on vacation so we saw the pediatrician who diagnosed Daniel when he was born (we like him too)) so she's called me twice to check on him (and me.) She called me herself, how great is that? Seriously, we can't ever move because I'll never find a pediatrician who measures up.

Moving on. How about a picture of a baby with a monkey on his butt?

I knew you'd like that.

Swaddled

Nothing like a tiny new baby to make you realize how gigantic your other kids have gotten. See?

In related news, Aden + Anais swaddle blankets are big enough to swaddle giant toddlers!

Adorable dinosaurs

After Daniel was born, my good friend Laura sent me a package with gifts for all my kids. And those gifts were adorable dinosaur shirts! Well, a dino onesie for Daniel.

Here's Will modeling his:

And Kalena in hers:

Don't worry, I cropped it so you can't see how badly her shirt clashed with her BRIGHT pink pants. Do you like her bow-tie? She took it off a big stuffed penguin. Really makes her look snazzy. Three year olds pick some great outfits.

Aren't those shirts cute? (The answer is yes, if that wasn't clear.) No picture of Daniel yet, because his is still too big. As soon as it fits though!

Needy guy

Will has a new habit these days: needing things. Anytime he wants something he'll tell you he needs it. For instance, at breakfast in the morning he'll tell you, "NEED juice! NEED juice!" He does it with everything, even things he decidedly does NOT need. I hear a constant refrain of "NEED tandy!" "NEED soda!" "NEED cake!" Seriously, listening to this kid you'd think all we feed them is sugar. All he needs is to hear one of those words and he'll start up.

He also doesn't want to wait on any of his "needs." The other day he started telling me he needed cake and I told him he could have cake after dinner. He responded with, "No dinner! NEED cake!" Then when I told him he was going to have to eat some food before he had any sweets he replied, "No food! NEED cake!" It's a little obnoxious, but mostly it's funny. The pleading seriousness in his voice gets me every time.

He's been more needy with people too. I would blame this on having a new baby, but it actually started before Daniel was born so I don't think that's it. He's taken to insisting on having an adult come with him everywhere. He does this by grabbing your finger and saying, "Tum on! Tum on!" and if you ask where he'll say, "Ober here!" And if you're not moving quickly enough for him he'll get behind you and push on your butt while saying, "Tum on! Tum on!" Fortunately for me he mostly does this when other people are around, not when I'm home alone with the three kids. He's also gone back to wanting to be carried often so he runs around begging people, "Hold me!"

It's a good thing he's cute.

Early intervention

We had our first visit with early intervention therapists yesterday. Because delays are expected in children with Down syndrome, an early intervention evaluation is done as soon as possible. While it's nice that this all gets started now, it's a little bizarre to do goal setting for a one month old. Really I suppose it's more for me. The goals are things the therapist wants Daniel to be doing in a month, but mostly we talked about ways I can encourage him to do those things.

Anyway, I'm mostly writing this so that in a month when I start talking about seeing the physical therapist you won't be all, "Wait, what?"

He is STILL on oxygen which is obnoxious because the pediatrician okayed a test a week ago. Apparently there was a miscommunication though, because when Brian talked to the oxygen company today they said they had nothing from our pediatrician's office. And then when he talked to the pediatrician's office they said they had sent over everything the oxygen company would need. They're sending it again now, but UGH. I am ready to be done with the tether.

Today's conversation

This morning Kalena was looking for some socks (why she was looking I'm not sure, since she knows they're in her dresser) when this conversation happened:

Kalena (in a sing-song voice): Sooocks! Where are you?
Will: Right here!
Kalena: You're not socks, Buster!

And then the whole conversation was repeated word for word. Twice.

Apparently Will thinks he's the only thing Kalena might be looking for.