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.

What would a trip to Florida be without…

Lots and lots of pictures???

Hammocks on the little “beach” between our room and the convention hall.  The lake had a bunch of fish in it, with lily pads.  At night we just sat and listened to the frogs chirping in the trees.  We don’t have many frogs here, so the sound was just weird.

This sums up quite nicely what Piper thought of the 90-some degree heat plus 90-some percent humidity.  And I have to say, I completely and totally agree with her.  However, it would be far less cute if I had similar outbursts.

This is looking down on Piper from the top of her stroller.  I had the back down as far as it would go, but it still had a fairly good incline.  She would not calm down until she rolled on her tummy.  HOW this was comfortable, I don’t know.  It worked.  She was out for the entire session.

Piper played by herself on the floor during most of the sessions fairly well.  She got bored pretty easily and ended up falling asleep in most of them. 

She didn’t, however, enjoy being looked in the eyes by other similarly-aged kiddos.  Babies were fine, bigger kids were great.  Adults?  No problem.  But other toddler-ish kids?  NO THANK YOU.  I’m not sure what it was.  The only thing I kind of wonder is if she could tell that they weren’t “stable”, and it worried her when they were topple-y.  Who knows.  We don’t get group therapies here through EI, but I guess we’ll start looking into other options.  It was really weird.  She would even instigate play (reach for their faces, touch their hands), but as soon as they looked at her, she’d start to pout.  And you knew it was coming when her little lip would start showing.  Just weird…

Saturday night, we stopped into the big dance.  It was one of the most awe-inspiring events.  Ever.  I think it was really meant for the older kids/adults with Ds, but everyone was there.  The DJ even had Ds.  All the girls got dressed up in their nice dresses (some of them even in prom dresses) and had their hair done and pretty.  There were boys asking girls to dance, dads giving their sons high-fives when they came off the dance floor, moms giving their girls the courage to go out and dance, dads dancing with daughters…  It really showed that, no matter what happens in their lives, people with Ds have an awesome and amazing life ahead of them.  I really hoped that the moms who were in our group the day before could see it.  That they’d allow themselves to see the light between the clouds. 

NDSC, Day 1

Friday afternoon the conference started.  We had “sharing sessions” that were broken up by age group, and then by moms and dads.  So we had probably 30-40 moms in our group with kids up to age 3.  Most of us had our kiddos with us, so it was really fun getting to see all the wee ones. 

I was really looking forward to this part.  I wanted to meet other moms with kids Piper’s age.  Unfortunately, the hour-and-a-half session turned into three hours filled with 10-15 minute diatribes about how terrible the birth of their kids were.  There were only a handful (less than 5, I’m sure) of us in the room that knew prenatally, so our stories didn’t even fit with everyone else.  I was really let down- I know that there were parents that were looking to share their stories with others who understood.  However, I’m not sure that the session was as uplifting as it was supposed to be; I think it would have been more productive if it were based and maintained in a more positive light.  I don’t think that it helped heal, help realize, help understand.  Instead, I felt like everyone’s frustrations built on each other and everyone was more firm in their, for lack of a better term, anger.  It really made me sad to see moms with kids who are over two still struggling, very strongly, with blatant anger and significant hurt over the Ds diagnosis.  I think the idea of this was awesome, I just wish that it had been facilitated in a more productive way.

Anyway, once it ended, we were off to dinner and back to the pool.  Here in Denver, it doesn’t matter how hot it is, outside pools are always cold.  Cold.  So it was really strange to be in water that was 4’ deep that was body temperature.  Piper loved it.  Seriously.  She loved playing in the baby pool that was about 6” deep, and she really loved being held in the big pool and bobbing up and down. 

How cute is this suit?  Piper and Sawyer had matching bikinis.  And I don’t think there could be anything cuter.

We played with the girls in the big pool for quite a while.  Piper floated on her back, kicked her legs, splashed (a lot)…

…and fell asleep.  Seriously.  She was o-u-t.  She didn’t wake up when we got out of the pool.  She didn’t wake up when I dried her off, or carried her back to the room.  Only when I was attempted to take off her bikini top and give her the steroid breathing treatment did she wake up a little.  I take it that the rocking sensation in the pool was a plus for her.

She did, by the way, sleep great while we were there.  She’s totally sleeping better in the mornings, and not waking up coughing like she had been.  And she’s sleeping in past 5am at home now, too.  Probably the most expensive way to get your kid on a better schedule, but whatever works, right???

We’re BACK!

…and what a GREAT time we had!  There were thousands of people there, including hundreds of kids and adults with Ds.  It was so fun walking around the complex and getting to look at all the little kids.  Without people wondering if you were some kind of weirdo creep. 

We got back yesterday afternoon after a very, very long morning.  They were at our room at 5:30 yesterday morning to pick up our bags so that we could get on a bus by 5:45 to get to the airport.  That meant that I was up at 4:30 (which is 2:30 Denver time, mind you) to get ready.  We got back to our house at about 11:30, exhausted.  I opened the fridge, which, mysteriously, over the week turned into a very cold, empty box.  I was starving by this point, so I made my mom go with us to Chick-fil-a for lunch, and then across the street to Costco.  We got back, and Piper was really starting to miss Luke (he couldn’t pick us up because he had training at work), so she refused to take a nap, and decided it would be far more fun to pout some and play a lot.

She was so excited to see all of her toys.  And her doggies.  She looked around the room and smiled when we first put her on the floor.  She has spent every second of the last two days exploring every nook and cranny she can find to make sure that everything is the way it should be.  She was definitely glad to be home!  So glad, in fact, that she slept from 7 last night until 9 this morning.  That’s right folks, 14 hours.  Fourteen hours. 

Anyway, I have a lot I want to share about our adventures, but it’ll take me a bit to get it all organized.  So here are a few pictures to get us started!

The girls strapped in and ready to go.  I’m not sure that Piper knew what to think about having a seat partner.  Or being able to see Magan and McKayle.  I’m sure that they had NO idea what was coming their way!

At the airport- the girls were both tired already, but weren’t being allowed to go to sleep until we got on the plane.  It worked well for Piper- she was crashed before we even pushed away from the gate.  We finally landed in Florida, after circling the state for almost an hour because of a storm.  I was not thrilled, and prayed that Piper’s good mood would maintain us for just a little while longer.  Both girls did GREAT!  I’m sure that our neighbors were not thrilled with sitting next to two one year olds.  They sure proved them wrong!

We got to the hotel and decided to find some dinner.  they said that it would take between one to three hours to get our bags, so we thought we could get something to eat, and go swimming (we packed suits in our carry-ons so that we could go before the bags came in), and by that time our bags would be in our room.  The girls got their own table, and conversed about their big adventure.   And looked awfully cute doing so.  Only problem we had was that there were never enough high chairs.  Because, ya know, Disney’s not intended for kids or anything…  But that’s another story.

 

In the room and getting ready to head to the pool.  Piper was really excited at the prospect of going swimming.  She’s saying “like” in this picture- it’s a new sign that she’s made up the last few weeks.

Of all the fun things in this world, Piper decided that the curtains would be a fun play thing.  I have no idea what’s going through her head here.  But apparently she loooooved them!

We got back to the room that night, after 10, I think, and found that we still had no bags.  After a few hours (yes, hours) of searching, we found out that Disney never picked up our bags from the airport.  They were delivered about 1am.  We kept saying that at least we weren’t going to wear our swimsuits all weekend to the convention. 

We could have forever been known as the families that showed up in their swimsuits.

Which is, admittedly, better than birthday suits. 

Holy Moly- do we REALLY leave tomorrow?

My gyolly- can’t believe that I’m actually taking my one-year-old on a plane tomorrow.  By myself.  Across the country.  I can’t even sit still for four hours.  This could be interesting.

So think good thoughts for us tomorrow morning.  And that my kid behaves herself on the flight. 

You know those signs they use for live audiences to tell them when to applaud?  I’m contemplating making one for the airplane.  One that says “Awwwww”.  If I could get everyone around us to “awwww”, Piper would stop any fit she was in the middle of, or about to be, throwing. 

Besides the flight, I’m getting really excited.  We’re going to have so much fun.  And I’m getting together with the other bloggers who are going on Saturday for lunch, which I’m also really excited about.  Piper’s excited to play, too.  She obviously doesn’t really know what’s happening, but I can tell she can feel the anticipation/anxiety/excitement that’s emanating from our house these days. 

And, to make everything even better?  Piper hasn’t woken up coughing the last TWO (count ‘em, folks, two) mornings.  Not that that has prevented her from waking up between five and five thirty (I literally cried this morning), but at least she’s not coughing.  Maybe, just maybe, the steroids are actually working.  Either that, or I’ve just completely jinxed ourselves, and Magan and Sawyer will send us into exile in the hallway at night.

I’m hoping that I’ll have internet somewhere in the hotel, but if I hafta pay, you won’t be hearing from me until we get back on Monday.  I’m cheap like that. 

I feel like I have about 147 posts I need to put up, but unfortunately, getting hours in for work (which, despite my best efforts, still didn’t happen this week) has priority.  Sometimes being an adult just plain stinks. 

So, if you live between Colorado and Florida, think good thoughts for us as we fly overhead.  Think good, calm, sleepy, soothing, and non-screaming thoughts.  Otherwise, we may be coming to an airport near you!

THANKS.

What happens...

...when your 3-6 month clothes are just a tad too big still.

I picked Piper up from her crib like this this morning.  No wonder she was mad.

Doctors, round 318,297

…or so it seems.

This is Piper’s new seat at the doctors.  Anyone who insists on going to Children’s at least once a week for any extended period of time has the privilege of occupying The Chair of Shame.

We started the steroids for Piper 10 days ago.  They said it would take 10-14 days for it to get to its full effect.

And seeing as she sounded horrible on Saturday, and we haven’t made any progress, I wanted to call her pediatrician to see if they had any other ideas of things to try while we wait for our ENT appointment next Thursday.  Especially considering we have a four hour flight coming in just a couple days.  I fully anticipated leaving a message for her doctor with the nurse, and just chatting with her over the phone today.

But when the nurse proclaimed the likelihood of a significant attack when we get to altitude on the plane, a trip to the other side of town wasn’t sounding so bad.

So we went, and talked tot he doctor for a bit.  We did find out some stuff.  The best part was that her the screening test for celiac, along with her liver and pancreas function tests, came back fine.  Wahoo.  One less thing to worry about.  I also got to see her chest xrays from the last time, and saw what the radiologist said could be a slightly enlarged heart.  I saw her 13th rib (yup- she has one), and the little clip they used when they took her gallbladder.  AND we saw her teeth.  They are there!

However, everyone in the clinic is stumped about what’s causing Piper’s junkiness.  They assured me, again, that she’s not contagious, so at least we have their blessing to go on the trip, including the airplane, but more importantly, including the pool.

And since we’re now pulling at straws, and exhausting all non-invasive options first, we were also sent us upstairs to the Heart Institute to verify, one more time, that her heart is okay.  The symptoms she’s having could be related to heart failure, and although we had a fetal echo, and she had an echo right after birth, they wanted to be ultra ultra sure, which I appreciate.  We got those results tonight, and everything was perfect.  They did say, though, that they couldn’t unequivocally state that her PDA is closed, so we’ll have an ultrasound in the next couple of months.  It was open at her last echo, but again, that was when she was brand new, and being a preemie, it was totally normal.  They haven’t been able to hear it since she came home, but want to be sure that it’s closed. 

So I guess that I get to take my kid to Orlando sounding like she just may be dying.  I asked the doctor if she could write a sign for me that stated she wasn’t contagious.  You know, to hang around her neck.  Highlighted, in bold.  I’m glad that she’s not in any kind of distress, and it’s not bothering her too much (although she gets MAD at the coughs every once in a while- who’d blame her??).

Wait. and. see.

I hate that approach.

Shopping trip with the boys

Yes, that’s right.  The boys.

Unfortunately, that meant shopping at the camping/outdoor supercenter that just opened up. 

And when you have a former Marine for a dad, and an uncle who used to be in the Navy, you can bet that a substantial amount of time will be spent in the military supply section.

Piper tried her very hardest to convince them that camouflage is just not her color.  She humored them for a few minutes…

…and then it started going downhill.  Quickly.

Piper didn’t care if it was a Marine cover.  She did not did not did not. 

The level of dissatisfaction that was reached at this point could only by cured by:

Yup- pink cowgirl boots.  Pink cowgirl boots.  Too bad they started at size 5.  Her feet fit into the ankle holes, but she was happy enough to just play dress up for a minute.  Besides, playing dress up with Uncle Justin and Daddy is enough to make any little girl happy (even if she had been thrown into a pile of sea bags not five minutes before).

Next came sunglasses: …which stayed on precisely as long as it took to take this picture…

And bitty chairs: 

End the evening with a lounge on a hammock, and you’ve got yourself a fun trip!

Piper’s learning early that shopping is good.  It doesn’t matter where, shopping is just plain good.