Hmm. Think this’ll be a problem?

Piper loves her baby dolls.  Loves.  She tenderly washes them in the bath (as tenderly as an almost-two-year-old will do, anyway), feeds them, gives them pacifiers, brushes their teeth and hair…  All those good things that toddler mommies are supposed to do for their babies.

Nana brought Piper a more realistic baby tonight. 

We’re praying that the baby weighs a little more than the dolly (who isn’t particularly light).

We’re also praying that the kid doesn’t have this much hair to alleviate the worry that it will be used as a picker-upper of choice. 

However, if hair isn’t present, picking the kid up by the head isn’t exactly a great option, either. 

Ohhhh dear…

**Disclaimer:  No, I don’t actually think that Piper will think that she can handle the baby this way.  She’s been obsessed with babies for months now- whenever we see them in the store, she gets very excited.  And she does know how to be “gentle”.  She does love her baby dolls, though. 

**I also have absolutely NO intention of any child of MINE having this much hair, you know, ever.  I did have more hair than Piper does, but not significantly.  Luke has more “thick” hair genes than I do, but he didn’t have much as a baby, either, just for the record.

Did you know…?

…that 3 gallon dog water buckets are really fun to carry around?

But they’re even MORE fun to throw around! 

On that note, I really must remember that when I’m downstairs in our unfinished basement and it sounds like the house is falling apart, it’s probably safe to assume that Piper has her hands on something that’s not necessarily hers…  And that it’s something really fun to drop.  Or throw.  Or bang on the floor.  It might save me many heart attacks in the years to come.

Research Project

A few weeks ago, I got a packet in the mail from a local university.  It said that they were looking for kids with Ds between 18 months and 5 years to participate in a research study that’s looking at the effects of balance training on gross motor skills.  And because I love things like research, I’m all for this kind of thing.

I sent back the packet to get more information, just because it sounded like it could be fun to give it a try.  Heck, why not, right?

I talked to the primary researcher on the phone, and we got Piper all scheduled to start.  Last Saturday was our first day- what a kick!

They’ve done the study with several variables, and it’s been effective with each phase.  They worked with kids with CP, but the study with kids with Ds had more drastic improvements.  When they did the Ds study, they did once-a-day sessions for 5 days.  I saw the data- the differences were dramatic, to say the least.  But, as time went on after the balance sessions were completed, the results seemed to trickle off.

So this time, they want to try once-a-week sessions, and see if the results remained for a longer period of time.  So we’ll go every Saturday morning for seven weeks.  I also found out that they’re working with eight kids to start, and they have a pretty good wait list, so I’m glad that we got the paperwork turned in when we did.

The first three sessions are to get a benchmark of where she is before the training.  Let me tell you- I couldn’t help but laugh as the college kids were trying to get Piper to cooperate.  We were chatting with the lead for a while (she’s super nice), and I just kept Piper in the corner of my eye the whole time.  Apparently, PT-to-be’s need help in understanding appropriate motivational tools to use on a 22-month-old.  I couldn’t stop laughing.  Especially when they were trying to convince her to do things like jump (yeah, right), walk with her feet on a line (uh huh- because most toddlers will do that, right?), and pick up an item from the floor (when she’d rather sit down and BLOW the bubbles, thankyouverymuch).  I’m sure that I don’t have the only toddler who wouldn’t understand the phrase “Now, walk heal-to-toe on the line!”, lol.  Especially when I know it’s not in her realm of doable skills.  I eventually got down and asked them what they were trying to get her to do so that I could “model” ways to get her to, um, comply. 

So, anyway, I’m really excited to get her on the platform in a couple weeks.  They were going to let Luke try out the platform on Saturday (at which point, by the way, two of the students were trying to get her height- I’d love to know how THAT went…), but the software was bugging up so he didn’t get to.  They’ll put her in a harness for safety, and we’ll try to get her on it for about half an hour. 

There was another little girl there this week (along with her two brothers, and one on the way!), so I didn’t take any pictures because I didn’t want her mom to think I was taking them of her.  Next week she has her own slot, though, so maybe I’ll have better luck (if I get a minute off of wrangler duty).  But this is a picture of the balance board thingy that she’ll be on.  Should be fun!

…we’ll see if Piper agrees…

Here a Chicken, There a Chicken

My mom found out that there were baby chicks and bunnies at a local farm supply store for Easter. 

And since Piper’s new favorite sign is “bunny” (and, subsequently “hop”), we just knew we had to go see.

The chicks were a day old (YES!  1 day!) and the bunnies were pretty teeny.  Piper LOVED running back and forth between the two.  Since it was a weekday, there was NO ONE there, so it was perfect for her. 

And, frankly?  I wanted to see the babies.  Piper was just a good guise by which the trip over there would be excused.

Luke decided he needed to chaperone.  Probably a wise idea.  Although I’m not convinced that he needed to be chaperoned just as much as I Piper did…

For those not versed in Pipereese, she’s signing “bunny” rather vigorously here.  She was  so excited.

She desperately wanted to pet one.  Thankfully her little arms just couldn’t quite reach.  She tried- stood on tippy toes, stood on one tippy toed-foot, tried crawling in…

She thought that if being a farmer meant playing with baby bunnies and chickens all day, she’d found her calling in life.

Until, that is, we told her she’d have to wear a pink cowboy hat in order to do so.  I think she’s moved on to other occupational endeavors. 

Goofus.

Piper’s new funny faces.

Weirdo.

…warming up tooooo….

…this.  And if she didn’t have high-collared pajamas on, you could see the tendons in her neck, too.  All of the tendons in her neck.  It’s quite attractive…

And this?  I think her ST should like the lip protrusion, don’t you???  Can’t say I’ve ever seen nose dimples before…

Now imagine her going between the two extremes, as quickly as possible, as she tries not to laugh in between.

She’s much more successful than WE are at not laughing, just for the record…

Tales of the Random Things My Kid Carries

Piper was riding on Luke’s shoulders through Target tonight.  She’d much rather have been walking, but she wanted to look at things that we, well, did not, so her choice of transportation was either riding in the card or riding on Dad’s shoulders. 

Anyway, we walked by the toy section, and the giant cage of big cheap balls caught her attention.

Her lips were so pursed from going “oooo!!!” that you could see the lines of cartilage in the tip of her nose.  Funny?  Yup.

So I decided that for $2.99, she could have (another) big giant ball.

The downside to my good intentions was that Piper then thought she should be able to PLAY with the ball from that point forward.  And it was too big for her to hold while in the cart, so we had a pouty kid for the rest of our trip who kept signing for “ball” and looking at us like we being mean for ignoring her desires. 

We finally made it home and she got to play with the ball.  She pushed it for a few minutes, banged on it for a few minutes, kicked it a couple times…

And then figured out how to pick it up.  And now that’s the sole purpose of the ball- a thing to carry. 

She was either twirling in circles here, or trying to figure out how to throw the thing.  And please ignore the dogs’ demon eyes- they do look slightly possessed….

…The dogs are constantly offering Piper their balls, so I think she was more than a little bummed when they didn’t want hers. 

Au(dang!)diology

Piper had a hearing test today with Audiology.  I have to admit- this is probably my least fun –ist to visit.  Maybe it has something to do with fairly lackluster experiences the first few times (she had no intention of turning her head toward a “whoosh” sound when we started around her birthday- and really, I’d have to say that the array of toys the audiologist used were vastly more intriguing than turning to a goofy sound, but that’s a whole other soap box.)

Since we got cleared by the ABR in September, today was just a typical follow-up, because kids with Ds get their hearing tested every 6 months to ensure that nothing is changing.  And I was soooo not in the mood to go.  Not, not, not, NOT.  Of course, that couldn’t have had anything to do with the fact that I was the brilliant individual who decided to schedule the test for 8am.  Two days after a time change.  Brilliant.

We chatted with the audiologists for a few minutes before we got started.  I think they were concerned about why it had been so long since we had sound booth test (May or June last year was our last), and then I explained that we did the ABR while she was sedated in September.  There were so many notes that day that it got missed when they were looking.  One of them asked why they didn’t end up doing ear tubes and followed it with “Oh, because her ears were too small…”  I had to tell her that no, they didn’t do tubes because she didn’t need them.  And that no, she’s never had an ear infection.  And no, they didn’t find any abnormalities on the ABR.  I think the phrase “Just because she has Down syndrome doesn’t mean that she needs XYZ” slipped my lips several times. 

Anyway, for the first time EVER, Piper PASSED the sound booth with FLYING COLORS today!!!  I was sooo stoked.  She even heard stuff that the other two audiologists in the booth weren’t hearing.  And she showed off her signing skills (which, as a side note, is SO MUCH FUN when she proves that she signs, well, and in sentences.  When they don’t expect it.  AWESOME.)  They’ve never been able to get an OAE before (she H-A-T-E-S anything in her ears), but we were able to today with two of them showing her things and me holding her as close and tight to my chest as I could muster (MAN that kid is strong…).  Even THAT she was totally normal.  The tympanogram, which looks at eardrum movement, was fine.  Everything was FINE.  Wa-HOOO!!! 

Hopefully they’ll be easier from this point forward.  She was definitely more willing to participate today, which is, you know, kind of necessary for a behavioral test. 

We celebrated tonight (Piper’s passing, yes, but more so the bright sunny weather) by taking the dogs on a walk through the open space after dinner.  There weren’t too many people, so the dogs even go to go off-leash for a little while. 

Piper thought it was hilarious, and didn’t stop squealing, laughing, and hollering the whole time.  It was even more fun when she got to run after the dogs, too.  And I mean run.

She’s running here.  As fast as she can.  Can you tell?  OH, she thought she was funny.

I think she wore herself out.

Ducks, Ducks, Geese!

Poor Piper got toted today to a doctors appointment, spent over an hour in the small exam room, too much time in traffic, then dragged through Costco as we waited for tires to be replaced on the van. She did so good, and because the weather was soooo nice, we decided to go to the park for a few minutes before heading home.

LOVE that there are so many playgrounds so close to the house!  This one is going to be a new favorite, I think- toddler swings and all!

(She looks like she’s holding on for dear life here.  She may have been, but I assure you she was laughing the whole time.)

She’s getting really good at walking on grass and in the woodchips/sand in the playground.  She had a little bit of hesitation when it came to going from the grass to the sidewalk, but I think with a little practice, she’ll be a pro!  Now the problem is keeping up with her…

Piper’s learning to say “quack quack” for the sound that ducks make.  Usually if we say “quack quack”, she does the sign for duck instead.  Either way, it’s pretty cute.  So when we told her that there were ducks in the pond, she wanted to go see.  The ground was really uneven, and Luke was afraid that she was going to slide into the water, so it made for some cute daddy-daughter photos.

I’m going to have to remember to bring something to feed the geese next time.  I wonder if it would scare the pants off her?

Baby Update

Luke has several days off that were “use it or lose it” before the end of the month.  So, he’s been off  a lot.  The nice thing is that he gets to go with us to doctors appointments (even though he’s getting out of my nemesis, audiology, tomorrow, but ya know…)

It also means that my honey-do list grew (…ahem, a lot) when I found out about his days off, and is now shrinking.  Which is a nice feeling with a baby on the way.  Well, nice for me.  Luke may have other feelings, but like the seasoned husband he is, he knows better than to express his opinions.

Today, we started with a doctor’s appointment downtown at 9:30.  Shouldn’t have been too bad, but Piper decided to sleep in (why, oh why can’t she choose to sleep in on days that I can sleep in, too???), and then decided to eat her breakfast at the pace of a sloth, so we left later than I had hoped.  And then we stopped at every. single. stinkin’ stop light on the way there (there’s a lot, I promise).  And then, true to downtown form, they had the street to the doctor’s office down to one lane.  So I hopped out of the car and decided to run to the office.  Which would be fine, but the sidewalk was closed, too, so I had to cross the street, go down the half a block, and cross again.  Of course, by the time I got there, Luke was following me in the car.  It was one of those “oh, really???” moments. 

Anyway, apparently everyone else in the office was running late, because it took us over an hour to see our doctor.  Piper ran out of things to do rather quickly (we brought loads of books and toys today, just in case), so she was very glad to be out of there.

We’re 29 1/2 weeks today, and everything looks perfect.  They’ve shown that if you’re at risk for preterm labor, you should have one of a few signs by 30 weeks, so I’m really glad to get to this point.  The best thing about today is that the baby has finally (as in, like, last night) decided to move out of breech; I feel less waddle-y today (is it coincidence that Piper tries to say “quack quack” now?  Hopefully she doesn’t associate the sound of a duck for the word “mom”).  She weighs about 3 pounds, which puts her at about the 35%.  Piper was born just above the 10%, so I figure that so long as she’s bigger than that (and below a certain point, too, don’t get me wrong, lol), we’re doing good.

NSTs will start next week, and we’ll keep doing ultrasounds every other week, just to be sure everything looks the way it should.

And now that we’re just about as far along as we were when Piper was born, it’s easy for me to compare our “situation” at that point in time.  The biggest difference is the lack of my GIANT feet I had by now.  I was so seriously swollen with Piper (I blame it on the obscene amount of extra fluid that Piper was generating because of the duodenal atresia) that I was wearing Crocs that were a size too big, and they were still putting HUGE imprints on my feet.  I was so miserable and I’m so thankful that it’s not the case this time.  Also, I’m convinced that I’m, in general, tons smaller than I was when Piper was born, again because of the extra fluid.  Woohoo for (little) HUGE differences! 

Raisins. RAISINS. Really???

When we lived in San Diego, we’d fly back to Denver every few months.  And between the fog in San Diego and the weather in Denver, we had our fair share of delays.

One time while we were sitting at the gate F-O-R-E-V-E-R waiting for our flight, I kept watching a mom flying by herself with a little boy, about 4.  He was way cute- had bright blond hair- so they became my source of entertainment.

The little boy asked his mom “Mom, do you have any chocolate cake?”

The mom replied, without skipping a beat, “No, honey, I don’t have any chocolate cake.  BUT, I do have some RAISINS- would you like some RAISINS???”

The enthusiasm that came with “raisins” was hysterical.  I mean, seriously funny.  Funny enough that it’s stuck with me for probably around 7 years. 

And even funnier is the fact that the little boy got so excited for raisins, you’d think that the chocolate cake was a green bean. 

I’ve often laughed at that little interchange- and I’ve always told myself that “it’s all in presentation”.

Except for now I’m not sure it’s all in the presentation.

Piper has decided that raisins are her snack of choice.  She’ll even forgo puffs for raisins.  No joke.  The kid is in. love. 

And once she’s had her fair share (because, really, due to, um, certain “qualities” of raisins, she does get rationed on this particular fruit…), if the bag is within reach or eye sight, or she’s able to get it into her reach or eye sight, she’ll start by asking “please” nicely.

…and when that doesn’t work?

I think “ticked off” is appropriate here.

SLEEP, continued…

It’s been a little over two weeks since we started Piper’s sensory input exercises to help with her sleep.

We’ve had intermittent success since then, but now that it’s been FOUR straight nights straight of sleep (several of those she went 6-8 hours in a row without waking up at all), I feel like it’s safe to say that the exercises are a SUCCESS.  Do you hear the angels singing???  No?   Must just be from here.

She’s still “up” for a few minutes every once in awhile, but the fact that she’s able to go BACK to sleep is huge.  Gigantic.  Massive.  Can you tell I’m excited???

One thing I’ve discovered is that, even though I’m very cognizant of making sure that she’s got “stuff” to do that’s stimulating for her little brain, it isn’t enough sensory exposure.  If Piper had a couple of rough nights in a row, I thought that we needed to keep it quiet afterward for a couple of days.  So we’d play it easy at home, read books, do puzzles, and just chill.  Unfortunately, the “quiet” was probably just exasperating the problem. 

So, we’re trying all kinds of new (or not so new), FUN, gross motor things.  Now that the weather is getting nicer, trips to the park will become a frequent MUST.  She’s having to climb the stairs a lot more often.  We’re playing with and on the big yoga balls more. 

I think the reason this really threw me for a loop is because she has NEVER had sensory issues, per se.  She doesn’t mind the feel of things.  She doesn’t care about new textures when she eats.  Admittedly, there are times when it takes her a second or two to really like the feel of something, but I can’t say that I can touch everything in this world without getting queasy here and there, either.  It has certainly never been big enough to worry about. 

I am soooo glad that we’ve gotten this figured out before we add another non-sleeper to the mix in the next couple of months.  I’m not sure I’d survive with two little girls up all night long. 

And I’ve so forgotten how amazing it feels to get real, decent sleep more than one night in a row.  Whooopppppeeee!!!

Now that I’ve admitted all of this, say a prayer, won’t ya, that I didn’t just jinx myself?  Please???

Proof in the Pudding

Piper has had chocolate pudding a grand total of ONCE. 

Well, minus the pudding she had while she was in the hospital last time, but it was usually vanilla.  And really?  I figure anything that’s consumed as a distractive measure just doesn’t count.

Evidence of that experience:

Now- Piper knows that all of her favorite treats reside in the pantry.  She also knows that hers are on shelves higher than she can reach.  So, if the door happens to be open (ie not completely and securely latched shut), she’s routinely pulling out every sack, every tupperware bowl, every anything she can get her hands on…  Her favorite happens to be the half-full bag of paper napkins- you can imagine how much fun it is to pick up that.

Anyway, Piper was busy “exploring” the other day.  She’s starting to develop an ornery laugh- you know, the one where you go “huh- maybe I should make sure that the house is still intact” kind of thing.

I found Piper, and I was instantly grateful that she has yet to develop some very specific fine motor skills.

Such as opening a cup of pudding.  Chocolate pudding.  Can you imagine the mess???

Hmmm…  I know you have to go like this, but why isn’t it working???

Oh no!  You were NOT supposed to see me.

But you can’t get mad at me.  In fact, if I smile just right, maybe I could have it anyway? 

(It didn’t work, by the way…)

Pleeeeeease???

6 months later…

There are two phone numbers that come across the caller ID that I always answer: Children’s (which, no matter who’s calling you, from what location, is always the same number) and my OB’s office.  Usually they’re just appointment reminders, but you never know.

A few weeks ago, Children’s called during speech therapy.  Piper was being mostly self-sufficient (ie not running away), so I went ahead and answered it- I had just scheduled a follow-up with audiology, and I figured they were going to change something, and it’s so much easier to NOT have to call someone back…

To my surprise, it was the Cardiology clinic following up with Piper, six months after surgery.  I was totally surprised since we were discharged from their service all of five days after we we went home from the hospital after surgery.

The nice lady on the phone just wanted to make sure that everything was back to normal; we were talking for a few minutes and it occurred to me that I DID have some questions regarding some of Piper’s habits, and wondering if they were related to surgery or not.

On the sleeping front, I’ve wondered in the back of my head if she wasn’t hurting some still in her chest/shoulder muscles.  She’s ALWAYS guarded herself after surgery- I’d have to really work to get her little shoulder muscles to relax at the end of the day, they were so tight.  And while it’s not as bad as it was by any means, she still gets sore and tight in there. 

The real question I had, though, was her tendency to keep her little “wings” up when she walks.  Her hands aren’t always “up” as far as they are here- usually more elbow-height, but you get the idea.  She has wonderful balance, and she doesn’t seem to need them up (if she’s sufficiently distracted, her hands are DOWN, and she’s up to about half down now, anyway).  It could be a security blanket for my kid who doesn’t have tons of self-confidence.  But as I was talking to the Cardiology team, they thought that Piper should be seen by the rehab PT department, just to sure.

So today we had our appointment- and we had FUN!  We walked into the big play room, and Piper squealed with excitement.  She immediately scoped out all of the toys, trying to decide what to do first.  It was pretty funny.

Anyway, long story short, Piper is holding her shoulders too far forward.  The therapist showed me the position of her shoulder blades, and where they should actually be when she’s at rest.  And since she’s holding them too far forward, her pectoral muscles have to compensate in the other direction.  Which totally explains her flap-like-a-bird stance.  She was totally impressed, though, with the rest of Piper’s posture- she said her feet look great, her ankles were perfect, and she was just a “good little walker”.  Actually, her phrase was “runner” as Piper sprinted from our side of the room to the other to say “hi” to the cute little boy who had just gotten there. 

So we’re supposed to try and come up with some exercises where she has to push and pull to strengthen those muscles.  Problem is that most of the exercises for those are for older kids; I’m pretty sure that getting her to pull a sling-shot may be a little advanced…  I think we’re going to build her a little scooter board where she can lay on her tummy and propel herself around with her arms.  She’s also going to have to climb the stairs more often and crawl when we can get her to (through tunnels, obstacle courses, etc). 

I was half anticipating (okay, maybe more than that) them telling me that I was full of bologna; it’s so nice to be right, lol. 

The campus we went to is about 30 feet away from a really cool sensory park.  Piper was getting tired, but I wanted to see what she’d do, anyway.  They have a wavy sidewalk that I wanted to see how Piper reacted to (she was more apprehensive about going up, but ran going down, lol).  They also had toddler swings, and I wanted to get her back on one to see if it was just her mood earlier this week.

Yup.  Definitely just her mood…

Waiting for Daddy…

I’m honestly not sure what she thinks as she sits and waits (sometimes not so patiently) for her daddy to come home.  I chalk up some of her enthusiasm to the realization that daddy home=dinner.  But I know that’s not all it.  When I’m really lucky, I get a few minutes of uninterrupted cooking time while Piper sits at the door, with the dogs, anticipating the arrival of Daddy. 

She knows it’s getting close.  She’s even signing “daddy”.  Love that little girl.