I know, I know, I know…

Yes, I acknowledge that this has little (okay, slim-to-none) to do with Piper.

But I had to brag…

I love having a garden during the summer time.

When we first moved into this house, I fell in love with the house (I love our house), not the lot.  The back yard isn’t as big as I was used to, and I was afraid that, by buying this home, we were giving up our ability to have a vegetable garden. 

The first summer we were here, we had to landscape the backyard for the first time- all that was here was builder leftovers.  So we put in a retaining wall to eliminate some of the slope in the grass.  Once it was done, we figured that the area above the wall would be a perfect place for a garden.  We planted a few things up there the second year we were here just to test and see how they did.  It was spectacular!  The area is absolutely perfect.

We were so excited for the summer after (last year) because we figured we could plant a lot more than we did the summer before.  We knew that Piper would be coming the first part of the season, so we figured that we could get all the planting done before she came and Luke’s responsibility would be maintaining it all while Piper was in the hospital. 

Well, we all know how that turned out.  And, unfortunately, it never was on our to-do list after she was born. 

So this year, we were uber-uber excited to plant. 

Fortunately (unfortunately???) our plants are growing a lot quicker than Piper…

These are part of the tomato plants.  It’s a lot of plants considering I don’t eat them.  The tall one on the right is a tomatillo- we’ve never grown one before, and weren’t sue it’d work.  It’s obviously having no problems.

Oh, and the tomatoes are caged.  But they’ve overgrown the cage.  Apparently they really enjoy the place they’re at…  And just to make this a kid-centered post, why not kid-centered pictures???

The zucchini plants, cucumbers, beans, and peas…  The yard looks a lot worse here than it actually does- Luke mowed the last time with the mulcher instead of the catcher, so the dry is just leftover grass… 

…aaaaand the daily take.

Kinda glad we don’t have more space for more plants.  I’m already feeling like we have green stuff coming out our ears…

Pajama Problems

Piper was tired tonight.  Not just tired, but the unless-I-constantly-move-I’m-gonna-fall-asleep pooped. 

So she finished her dinner and I laid her on the ground to give her her steroids and put on pajamas.

Lemme tell ya- I had no idea how difficult it could be to dress a 13 pound kid.  However, dressing is significantly easier than giving steroids.

In order to administer them appropriately (and they’ve completely given me the willies with the steroids- you can’t get any in their eyes, make sure they breath it all in, make sure it doesn’t leak out the bottom of the mask, afterward you have to make sure you scrub their face, and watch for thrush in the mouth- sounds like fun, right???), I have to lay my child on the floor between my legs, put her shoulders under my knees, and her legs up on my stomach.  Then I can bend my knees up a little to keep her head somewhat straight.

I’m thinking of entering us in as a circus act.

So, after the drama tonight of getting this taken care of, I grabbed her pajamas to put them on.  Needless to say, she had absolutely no intention of sitting still any longer.  So off she went.  As she was getting away from me, I was trying to get her arms and legs into the holes.  I figured I could get her snapped up once she was half dressed. 

Somewhere in the midst of her trying to get away from me as fast as she could and me cramming her appendages into holes as fast as I could, things went bad. 

And sadly, I didn’t notice until I couldn’t figure out why I wasn’t able to get her snapped up too easily.

Yup- I got her right arm in the right arm hole, but her right leg in the left leg hole. 

It had to be terribly uncomfortable.  And certainly a fashion faux-pas. 

This is what she had to say about the matter:

And in case you’re wondering, yes, those are Christmas PJs.  But when you find them on clearance in the right size, what are you supposed to do?  Not buy them???  Besides, I would be quite surprised if they don’t fit at Christmas, anyway…

I’ve gotta get more original…

I was about to title this post “Piper’s new toy”, and then I realized that I’ve probably used that, at least once before.  And then I thought that you probably think Piper gets a new toy at least once a week, which in and of itself isn’t necessarily untrue, but they’re always “therapeutic”, so that means she’s not spoiled.  It just means that her therapy arsenal is very well stocked.  Yup. 

Anyway, Piper loves this.  Unfortunately, it’s larger than I had anticipated and takes up a large portion of our living room.  At least a large portion of my husband’s viewing area between the couch and the TV.  So it’s definitely going to be one of those get-out-only-when-you-want-to-play-with-it toys.  Thankfully it folds up nicely into a 1 1/2’ wide circle.

It’s a big pop-up play tent.  You can thrown things into the roof part (which, at this point, is more for Luke’s and my enjoyment, and Piper’s frustration, because it’s really fun to see toys rain down on top of the kid and her have no idea that they’re coming.  Or where they’re coming from), climb in the door, and look out the windows (which, even if Piper could stand independently, the windows would be no less than a foot above her eyes). 

She likes to go in:

 

…and out…

…and then change her mind and go back in before she’s actually gotten all the way out…

…and flash us her best cheesy smile on the way out for the eight-hundred and sixty-seventh time.

Then she’d get out and start climbing up on me as if to say “Did you see me, Mom?  Did you see me???”.  And really?  With that smile?  How are you not going to be happy with her???

AquaJoy

We made a discovery this weekend.

A BIG discovery.

We found out that Piper loves, no, LOVES water features.

She walked all around this place over and over and over getting in and out of the water spouts.  And singing at them as we went. 

It was pretty toasty outside, and the water wasn’t frigidly cold, so it felt really good, too.

We both were soaked by the end.

Well worth it.  Totally well worth it.

 

Joy.  Pure joy.

On the way HOME!!!

Monday morning it was time. to. go.  I think the girls were (okay, at least my  girl was) cooked.  Piper kept signing “daddy” and looking around for him whenever we went anywhere.  Both girls fell asleep nice and early the night before, so it gave Magan and I a chance to get everything packed and ready to go.  And it was a good thing; we had to be up at 4:30 so that we could catch a bus to the airport. 

My plan for Piper worked pretty well- I got her out of bed right before we had to leave, put some clothes on her, and prayed (really hard) that she’d be so tired she’d forget about breakfast.  At least until we got to the airport.  We were a fair distance away from the main part of the hotel, so we got the bellhop guy to help us out on the golf cart.  Probably one of the best things we did the entire trip.  You should have seen us trying to get into the airport with two babies, two strollers, two adults, a teenager, and all our luggage.  Comical doesn’t begin to describe our appearance, I’m sure. 

Security was remarkably easier in Florida than it was in Denver, which was a pleasant surprise.  We had it figured out by the second go around.  I could get Piper’s milk and yogurt in (plus my chocolate canned shake, on accident) just because it was for a baby and could feed her on the ground once we got to the gate.  Perfect!

After the babies ate, we let them play around on the floor to try and get rid of every ounce of energy we could possible squeeze out at 6:30am. 

They were both surprisingly cheerful.  Sawyer even had her signature piggies.  Fancy!  

…and these, my friends, are some of my favorite poses.  Ever. 

Are you ready???

Synchronized A-Framing. 

They must have held The Position for a good couple minutes.  Talking the entire time.  At least I’m pretty sure they were “talking”.  It could have been all Piper cussing me out for making her maintain such an preposterous position. 

Piper slept for about half the flight home (which was amazing) and woke up by knocking over my glass filled with ice (you know the ones- where they are so generous as to let you have a quarter of a pop…) all over the lap of the guy sitting next to me.  The attendants on this half, however, were exponentially nicer than the ones on the way there (which is NOT saying much), and actually let me have a little carton of milk for Piper, which helped satiate her for the remainder of the flight.  Not until, mind you, she decided to spray a mouthful all over the arm of the nice gentleman.  Did I mention he was asleep the whole time?  I’m sure he was wondering what kind of crud he was scraping off his arm hairs when he got home.  But I’m choosing not to think about it, and pray that he doesn’t live around here…

My mom picked us all up from the airport because Luke had classes at work he couldn’t get out of.  It really broke Mom’s heart to have to see Magan and Sawyer…

We had such a fun time!  And I’m so glad that we go to go with friends- Piper and I had such a blast! 

Conference next year is the first week of August in Texas.  We’d love to go and see all our Texas friends, however, I don’t think I Piper would be able to handle the heat.  That’s my story, and I’m stickin’ too it.  But for anyone else who’s more humidity-inclined, I’d highly recommend it!

DISNEY!

Sunday was the end of the official conference.  After the last plenary session ended (at which Congresswoman Cathy McMorris Rodgers, who has a 2 (or three?  I can’t remember exactly) year old with Ds was the keynote speaker), we let the girls grab a nap and we headed to Disney.  We decided that we couldn’t quite rationalize buying tickets into the park because Piper and Sawyer weren’t going to be able to partake in the festivities, anyway.  So we headed to Downtown Disney instead.  We stopped at some of the other resorts on the way. 

The only problem we had was getting onto the buses.  Every time we got on, we had to unload the babies, take everything off the stroller, fold up the stroller (while holding the baby, mind you) and somehow get onto the bus.  By ourselves.  Did the bus driver offer to help?  Nope.  Did they just look at us in quiet condemnation?  Yup.  Yeah.  It was great. 

But that’s besides the point.

Was Piper pooped?  Uh, yeah.  You’d think she was the one doing impressive juggling tricks with her own body weight. 

It’s amazing what a little nap (and a TON of air conditioning) can do for an attitude… 

On the Boardwalk:

I love this one of Sawyer- it’s like she’s saying “C’mon!  Let’s get outta here!!!"

…and here they’re exploring their options of potential destinations.

And then my bitty little girl, my Mama’s Girl, realized that she didn’t want to leave without me.  Yup, we’re good like that…

(actually, I think this was another of those “please don’t look me in the eyes” events…  But I truly love Piper’s face here, lol)

…and she pouts.  Still. 

 

After we were done on the Boardwalk, it started to rain.  No, it started to pour.  We decided it was a good time to find a bus to Downtown Disney for real.  Thankfully the bus stop was covered.  You can kind of see it pouring off the roof above us behind her. 

And, sadly, the only pictures I got of Piper with any characters, but cute nonetheless.  The most fun part of this, though, was watching the faces of passers by when I put my seemingly four-month old on top of an unstable log.  And then step away.  Yeah- that was fun…

The rain this day was unbelievable.  It wasn’t constant, but man, when it was raining it was r-a-i-n-i-n-g.  And don’t even get me started on the humidity in general.  I’m pretty sure I scared Piper on more than one occasion with my new ‘do.  And probably more than just her, I’m sure. 

That, my friends, is why I’m settled in Colorado.  Lack of humidity.  And, ya know, family ‘n’ stuff…

I really just don’t know

So yesterday we went to ENT down at Children’s.  It’s been a whole week and a half since we’d been there last.

And I don’t know what to think.

I felt like I had to explain stuff a zillion times, and they still didn’t get the hang of what I was saying.  I got chastised because I’d let the croup go on from February until now before doing something about it.  Then I had to explain that no, the croup hasn’t been since February, it’s been since April.  And that in February she had problems with intubation. 

They (I say “they”, because I had to give her entire history, even though it’s all in her notes, to both the nurse and to the doctor) said about a half dozen times that she’s been intubated a lot of times (three, to be exact), which is one of those “you think I don’t know that???” kind of things.  They seemed shocked that she’d actually passed her newborn screen (I had to bite my lip to prevent saying “do you think I would have waited this long to bring her in if she hadn’t???”, but that’s besides the point).  They’re also “sure” that she has fluid in her ears, despite the lack of sickness of any type, ear infections included. 

I don’t know.  I don’t want this to sound really negative- I know that there’s something going on with her breathing.  The steroids are helping a lot, but she can’t stay on them forever.  And there’s, of course, a chance that her hearing tests are valid and there’s actually something going on that’s preventing her from hearing as well as she should. 

However.  I really, supremely, very much hate when the phrase “kids with T21 tend to…” slips lips. 

So our plan is to take her in and have three (I think) different scopes done on her to check out the anatomy of her esophagus, subglottal region and beyond her voice box to look for any abnormalities.  His theory is that there’s a subglottal stenosis (narrowing of part of her airway) that was likely caused by the intubations.  He said that once he goes in and finds the severity, he’ll look to see if there’s something he can do then, or have to bring her back later on (this part didn’t make sense to me- if it’s bad, wouldn’t you want to do it then???).  If it’s pretty minor, we’ll have the wait-and-see approach (one. more. time.). 

Before he does the scopes, he’s going to look in her ears really well.  I hate thinking that they’re just going to place tubes because the likelihood of her needing them at some point, again based on her Ds diagnosis.  I made it very clear that I didn’t want tubes “just because”.  If she has fluid, fine.  But if she doesn’t, I’d just assume them leave well enough alone.

Once the scopes are done, they’ll do an ABR (which I had to ask for three different times…).  Assuming, of course, that there’s not “too much swelling” in her throat, whatever that means.  My theory behind this whole thing is to put her under anesthesia as few times as possible (remember?  They reminded me of how many surgeries she’s already had a half dozen times yesterday…).  And seeing as we’re getting no where with audiology, I’m sure that an ABR will be on our “list” for the next six months.  So why not do it now???

Again I say- I don’t want this to be completely negative.  If there’s something we can do for Piper, we’ll absolutely do it.  If it means hearing aids, fine.  If it means constant follow-ups, fine.  But I’d really like to know what that is! 

I don’t feel like I connected with this doctor yesterday, but he’s supposed to be really good, so I’m trying to get over it some.  And it was at the very end of the day, near the end of the week, so I’m trying to give him the benefit of the doubt.  I’d rather have someone who’s an amazing surgeon with so-so bedside manner than someone who’s not so good, but easy to talk to.  I definitely had the feeling that I should have been sporting that tattoo on my forehead again today… 

Anyway- the surgery scheduler is supposed to be calling on Monday or Tuesday next week to schedule.  Probably sometime in August he said. 

I’m. So. Over. It.