Halloween Eve

Piper had a make-up session today with Becky, her occupational therapist.  Piper was so excited to see her again!  And she had to show her the Halloween outfit she had stored away.  She's starting to actually enjoy (and not just "do") her sessions with Becky.  She has to work really hard, but she doesn't mind it.  Becky said that she doesn't often have babies that are so accepting of the exercises!  She talked and laughed and talked and laughed all morning.  We got some new exercises to do because she starts to hold her head to the left when she's tired and sitting unsupported, so we can nip that in the bud before it gets too bad.  She's getting so strong!  Afterward, Piper had a nice LONG nap (which was almost as nice for me as it was for her!).

Uncle Justin and Aunt Rachel came over this afternoon, too.  Uncle Justin told Piper all about Halloween.  Just the thought spooked her!

But she was made happy again when they showed her the new bib they brought.  She hasn't worn bibs much, and thought it was really funny to have a face on her chest that she could play with.

Maybe this holiday stuff isn't so bad afterall!  ...Maybe...

Just monkeying around!

(click to enlarge)

Let it snow!

You know you're from Colorado when your Halloween costumes are always big enough to fit a snowsuit underneath.  This year is no exception!  It's been snowing since last night, and isn't supposed to stop until tomorrow afternoon.  We've been hibernating all day-- it's fantastic!  Piper's therapist couldn't get out, so Piper got a snow day from "school", too, just like all the big kids around.  I love the first real snow of the season-- everything is so calm and pretty!  Here's to snow drifts and icesicles and chicken noodle soup!

I have to admit

Piper's five-and-a-half months old...  And her room isn't done yet.... sigh...  It started when I was still pregnant-- I wouldn't let Luke paint her room until what ended up being just a few weeks before she was born.  I had feelings from very early on that I was going to miscarry, so when my doctor told me that the stillbirth rates for babies with Ds are very high, I was horrified that we weren't going to have a baby to bring home.  The plan was to get through the baby shower and then we'd have time to work on the stuff we wanted to put up on her walls.  After all, we'd have a couple months to get it all done.  And since we knew we weren't allowed to have her early because of the surgery (in fact, her surgeon said that we could go late and she'd be happy), we figured we'd have plenty of time.  Then, two days after the shower, Piper had different ideas.  So much for time to get stuff done!  Not that that's much of an excuse-- she's been home from the hospital for almost 4 months now.  So I decided it was time to give her a fun little girl's room!  We're using large canvas mats, quilt patterns, and pretty fabric to make a flower/butterfly/ladybug theme.  Unfortunately, it's more time consuming that I had anticipated...

We worked all day yesterday and for a while today...  Piper helped!

We found and cut and traced...

Piper helped.

We made a mess--

Piper helped.

 

 Hmm...  Maybe if she was actually helping we'd be done by now?  Oh, well-- off to cut more flowers... 

Songs my Grandpa sings

How much is that baby in the window?

The one with the cute little face?

How much is that baby in the window?

I do hope that baby will play!

Too bad it's too cold to go camping!

My dad bought me this sleeping bag for my dollies when I was little.  Piper wanted to give it a try...  I think she's all ready for next summer when she's big enough to go real camping!

(...and no, she doesn't actually get to sleep in it...)

Step Up- September 27

After Piper was diagnosed with Down syndrome, we started exploring the community that we were then initiated into.  Finding resources online, keeping up with our favorite cuties on their blogs, and learning all we could kept us pretty busy until she came.  The community as a whole is HUGE-- I feel like we've still only scratched the surface!  

Every state has their own Down Syndrome Association (Mile High Down Syndrome Association here in Colorado).  They are responsible for outreach, education, and communication for families in the area.  And every year, each organization has their Step Up or Buddy Walk.  It serves as their largest fund raiser of the year, but it turns out to be a celebration of all things Ds.  This year, Colorado's had almost 3000 walkers, and they raised almost $250k.  Wow!  What a blast we had!  It was so fun to see friends and families come out in support of their little ones.  This year, we scoped out what it was all about.  Be prepared for next year-- we're planning a lot more for next year!

Here are some pictures of day-- we couldn't have asked for a more beautiful day!

 

When I grow up, I wanna be...

3 month clothes?

I hoped...

I tried...

I failed...

...maybe for Christmas???

Doctors, day two

 

Piper was SO excited to go back to the doctor, can't you tell???

I can't even start to explain how relieved I am to have today over with.  We chose the coldest day of the week, with snow, to have Piper's follow-up with the pediatrician.  Our last visit didn't go so well, so I was really apprehensive about today.  She DID gain weight well the last couple weeks, so I admitted to the doctors that I was allowing her to sleep through the night (which I wasn't supposed to be doing).  They're all on board with it now, thank goodness.  It went a lot smoother than I thought it might!

She's almost 8 pounds!  ...and it only took 5 months to get there!  She doesn't have to go back until her 6 month checkup, which gives us 3 weeks to stay out of the germy office.  Woohoo!

How much do I owe you? Let me count the ways...

It's days like today that I am so glad to have a mom who's so willing to put up with us!  Piper had a follow-up with the surgeon today at PS/L.  The milk bank is at the same place, so I decided that I could take a load to them at the same time.  Mom came with us to keep us company.  Little did she know...  The plan was to drop off the milk, go get lunch, then go to the doctor.  Easy enough, right?  We got to the hospital and parked in the loading zone (praying, of course, that we wouldn't get towed with no one in the car).  Piper rode in the Baby Bjorn, which just left two BIG coolers FULL of milk to be carried.  We were running inside (hoping to catch the staff before they went to lunch) like maniacs with the giant coolers (which we later wondered if people thought they were organs...)  Of course, I couldn't remember what floor the bank was on.  So we rode up and down the elevator for what seemed like FOREVER trying to find the right floor.  We finally found it and left the coolers there until after Piper's appointment.  We got back down stairs, our arms about two inches longer than when we started, and drove off to lunch.  We got to Chedd's (our favorite), got Piper out of the car, and walked a block over- only to find that they were CLOSED.  The nerve!  SO, we got back in the car and decided to drive to Cherry Creek since we had a couple hours to kill.  We got back to the doctor's a little early, which was good, because, silly me, I couldn't remember what floor the surgeon was on, either, sigh.  By this point, I thought Mom was going to steal my car keys and leave without me...  We got in and out of the surgeon without much of a hitch, and headed back to the milk bank to pick up the coolers.  Today's drop-off was over 1200 ounces of milk (do you KNOW how many gallons that is???).  They helped us get to the car, and we were off to have lunch somewhere that WASN'T Chedd's...

Anyway, the important news-- Dr. Kay, her surgeon, doesn't think that the bumps under her incision sights are actually hernias, which is good.  We'll go back around her first birthday to check again, just to be sure.  Whew. One thing done.  We also asked about the gallstones we found out about in August, and what might be done with them.  She wasn't sure, but Piper may be too old for the stones to resolve on their own at this point.  So she's checking with her GI doctor, and will get back to us with a plan of attack for those.  Ugh.  The idea of Piper having to have another surgery just breaks my heart-- think good thoughts of NO gallstones!  

While we were waiting for Dr. Kay in the exam room, Piper had a "therapeutic" exercise session in front of the mirror on the table.  She loved the crinkly paper!  Here are some pictures:

  

Stay tuned-- Piper has a busy day tomorrow, too, with OT/PT (we're meeting the PT for the first time) and then a weight check with her Pediatrician.  What a week!

New Accessories

Before Piper was born, we'd see Babylegs in the store (in fact, thanks to her Nana, she had several pair a LONG time ago...) and gawk at how cute they were. Our problem? Let's just say that the phrase "one size fits most" is NOT Piper's friend...

The bottom sock is a regular legging that you buy at the store. The top one is the one we made for Piper. My mom, sewer extraordinaire, found a website that showed how to make baby legs out of ordinary socks. It took some creativity to make it work (we had to redo some of the steps in order to get them small enough), but Piper officially has her own leggings that actually fit!

How cute is she??? They work SO well, and she's already worn them lots. I figure that they'll work as a second layer of warmth under her little pants this winter. They were really nice at therapy last week-- it gave her something to have on her legs, but my view of her exercises wasn't obstructed by baggy pants. I think that they're easier for her to maneuver in, too, which is also a plus. She moves around and kicks a lot, so I think she needs the protection on her knees. The only hard part is finding socks that will fit. I've found some little tiny girls' knee highs that work really well and don't require an extra seam down the back. So now we're on a hunt for the cutest socks we can find (we figure it'll be a while before the "real" ones are even fake-able for our itty-bit...) and she obviously needs leggings to match her outfits. Oh the joys of having a little girl!

Thanks, Nana, for making them!

Hmm... Where to start?

Okay, so I've been thinking of doing this for a while now, but haven't really known where to start. So I guess I'll start by introducing you to our family:

This is my husband, Luke, and me- we celebrated our 7th anniversary this year. We lived in San Diego for a few years while Luke finished his enlistment in the Marine Corps and I finished college. We moved back to Denver, where we both grew up, in 2005. Luke is a software engineer for EMC. I worked for Boulder County until August.

Until this spring, these were our kids. Duncan and Maggie are our (very) spoiled dogs. Maggie is the older, more... intelligent?... one. She invents her own games to play, and somehow manages to get her brother into trouble fairly regularly. Maggie knows real tricks, as opposed to...

...Duncan. He's our giant baby. He's the lovey one of the two, and is always good for a laugh. The only tricks he knows, though, is to smile when he's really in trouble. And how can you get mad at that? He's afraid of everything, including the camera (we were only able to get this one because he had no idea what the fancy camera equipment was-- once the flash went off, he hid in the bathtub for the rest of the day...), so you probably won't see much of him.

The dogs were forced to take the back seat this spring when we welcomed our daughter, Piper, into our lives. What a blessing she has been! She was born on May 11, eight weeks early. She weighed 3 pounds, 6 ounces and was 15 1/2 inches long. We were so excited to meet her, we just didn't think it had to be quite that soon.

When I was 17 weeks along with Piper, we found out that she had Down Syndrome. While it was a shock, and took some adjusting to, our love for her was never stronger. We had many appointments after that to make sure that everything was going well. At about 26 weeks, Piper was diagnosed with Duodenal Atresia. This is one of the most common issues that kids with Down Syndrome have. It's when the lower part of the stomach doesn't connect to the upper part of the intestine. She had surgery on her second day of life to correct it. Thanks to amazing surgeons, it was done laproscopically (which isn't done many places) even though she was so tiny.

Piper came home from the hospital on her 7 week birthday. It was the best day ever! She weighed 5 pounds, 3 ounces that day. We waited for several weeks for her to learn to eat; once she learned she did GREAT. A few days after she took her first bottle, we were home.

This is Piper now. She's five months old, and doing really well! She's working on the skills to crawl and weight bear in therapy, which is really exciting. It's so fun to see her learning and figuring out the world around her! She's started to laugh and talk a lot-- it makes my heart sing to hear her! She's still pretty teeny-weeny (about 7 and a half pounds last week), so we're working on the whole growing thing.

So that's our family (minus the chinchillas in the basement, but they're camera shy). Join us in our journey, wonchya?