Yakkity Yak!

Piper, Mom, and I went idea-hunting for Piper’s birthday party today.  We got some good ideas; we’re going to have so much fun.  I can hardly wait!

Piper, who was exhausted, cried the whole way home.

Not really cried, but talked. 

The best part?  She started actually saying consonants.  She’s said a few m’s, and maybe a couple b’s, but I can count those on one hand.

Until today.

In the 1/2 hour drive home, she said m’s, n’s, b’s, l’s, g’s, and y’s. 

I was so happy.  We’ve been anxiously waiting for her to start talking.  And she started with a bang!

She had to show off for her dad tonight, too.  She ate her dinner beautifully (which is also getting remarkably better), and finished right when Luke was getting home from work.  This is the happiness that ensued soon thereafter.  She had to show Daddy all her new tricks!

Piper cried the whole way home.

And I couldn’t be happier!

Creeping Crawler

Piper doesn’t bend so well, remember?

Crawling is progressively getting better, but we still have some work to do.  She’s willing to stand on all fours, and it’s less of a battle to get there these days.  It no longer (not always, anyway) requires using the force of the chest of a full-grown adult to get her to bend in half.  It does help, though, to hold back her hips to keep them from going straight.  Sometimes I hold her back by the shoulders.  And pray that Social Services isn’t looking through the windows.

So I’ve kind of given up getting her bottom half in motion, thinking that if we can get her top half moving (remember this is where her lower tone is), maybe her legs will follow.

So my 11 pound baby loves to wheelbarrow.  My 11 pound baby, who has poor upper body strength, wheelbarrows to get toys.  Or the dogs.  Or her father.  Last time I checked, wheelbarrowing takes a lot of muscles.  At least that’s what I remember from grade school gym. 

(notice the perfectly straight knees…)

So, we’ve learned that Piper may not do things the easiest way.  She’ll do them her way, and that’s fine.

She’s certainly not shy to tell you how proud of herself she is, though!

Light as a feather, STIFF AS A BOARD

Being the parent of a child with special needs, certain phrases and terms draw more attention than they did before.

“Not normal” is a phrase that is not socially acceptable when referring to a child who is differently-abled.

To me, though, it doesn’t always suit.  I have no problem in saying that Piper has an abnormal ability to win over a crowd.  She has an abnormally infectious smile, and her patty caking is abnormally silly.  Abnormally small?  Yup.  Those don’t bother me one bit.

Sometimes kids just don’t fit the “normal” moniker, and it’s not a big deal to me to admit that all kids have areas in which they are not normal.  It’s what makes society interesting, after all.

Kids with Ds tend to have low muscle tone.  Piper’s lowest tone is in her core and her upper arms.  We focus on those areas more often than “typically developing” (notice that it’s not “normal” here) kids have to in order to give her a hand so that she can accomplish her milestones just as her peers would.

Her legs, however, are another story.  She definitely does not have “normal” Ds muscle tone below the waist.  In fact, we have quite the opposite problem.  Becky says it’s because she didn’t spend any time “cooped up” in utero since she was born early.  Her extender muscles work just fine, thank you very much. 

Piper enjoys being straight.  Board straight. 

This is Luke trying to get Piper to transition from laying down to sitting up.  Ideally, he should be able to hold down the top hip and she should push up with her bottom arm.  Can you tell how well it works???  Notice the muscle flex in her legs.  Even her toes are tensed.  Apparently flexing her face helps, too.

This is a little harder to tell, but her feet are on the floor, and her chest is above the ground on my hand.  I can literally pull her to standing straight from this position (hopefully Becky’s not reading that part, lol…)

It makes the weight-bearing part of her job a lot easier, granted.  But crawling?

Last time I checked, crawling required bending.  

Ride ‘em, Ride ‘em, Ride ‘em!

I got to ride a horse today!  Apparently “horse” is just a word for a piece of wood with a saddle over the top.  Mom said something about it looking like a Clydesdale for me.  I’m not sure what she meant by that.

See me, Dad?  See me? 

I’m good.

Yeehaw!

Ice Cream, You Scream!

Piper and I met friends at the mall today.  She had a whole lot of fun with Noah, who’s 3; they kept each other very well entertained!  We were able to find some 3 month, short sleeved, non-onesie shirts, which she has substantial room to grow in.  I was very excited!

We ended our day with Dairy Queen.  Oh, how I love Dairy Queen. 

Apparently Piper does, too.  All it took was one bite for her to be hooked.

Notice her licking her lips in anticipation.

And wondering WHY I had withheld the delightfully sweet and melty goodness from her for TEN whole months.

 Not so politely telling me to give her asking for more.

And gingerly removing the morsels of yumminess from her messy face.  And then proceeding to eat the napkin.

I’m starting to think that our ice cream budget is about to increase.  Oh. Darn.

Snow Baby

So you remember what our Sunday looked like.

Yesterday Piper and I got some errands ran.  We left the house and the sky was blue.  Not horribly warm, but warm enough.  We got to Target, and by the time we were leaving, it was sleeting.  About a mile down the street, the weather was nice again.  We went to Babies R Us (which was an abysmal disappointment, once again) and left to pouring rain.  I had to get to Costco (to get the stuff I completely forgot on SUNDAY), so I had no choice but to brave the insane wetness with Piper.  I was hoping that it wouldn’t be as bad by the time we were done there.  It is Colorado, after all, and persistent rain storms are relatively rare. 

Ha.  Nice thought.

We finally got home, after feeling like I was hydroplaning the whole way (another sensation we don’t get a lot of here).  By the time I let the dogs outside, they were white with snow. 

Within about 3 hours, we had at least 9 inches or so.  Seriously.  A lot of snow.  And it was horribly wet.  Luke had to go out and shake off our little stick-of-a-tree in the front yard to keep the branches from breaking. 

It calmed down late last night, and was just lightly falling through this morning.  All the schools were cancelled today, so snowmen abound in the neighborhood. 

It’s wonderfully brilliant now.  Not a cloud in the sky, and really warm.  So we decided to take a trip outside and let Piper really play in the snow, for the first time.

She analyzed the melty characteristics of the snow very closely.  That only lasted about 2.4 seconds, however, until her hands got a little cold.  Then she was ticked off. 

 

I wanted to let her actually sit in the snow without the Bumbo for just a few minutes (I didn’t want it to soak through her little not-water-proof snowsuit).  She did not.

After this, she proceeded to tell me off for a good 15 minutes as she not so politely explained to me why babies aren’t supposed to be put into the snow. 

Teaching her young…

Our house has been inundated.

Taken over.

Filled.

With computers.  Especially when you consider the onslaught of pieces that reside in our basement.  Luke promises me that they’re all supposed to be put up on Ebay (apparently there’s an emotional attachment, or something), but there they lay.  But that’s another story.

I guess that’s what you get when you have a computer engineer for a husband.

You also get computer “games” for babies.  He installed this on our desktop this morning, and I had to put it on my laptop so that Piper could play it more easily. 

It’s called Babysmash (if you’re interested, you can download it free at www.babysmash.com).  It disables the function of your keyboard so that babies can smack and pound to their heart’s content.  And they’re rewarded with babies laughing and bright shapes and letters on the screen. 

So after a particularly arduous therapy session this morning, Piper decided she needed some “desk” time.  Excuse the myriad of boxes in the background; I was attempting to find an appropriately tall “desk” for her…

She was very excited to get started.  She knew exactly what she was supposed to do!

Sometimes she was very astute and deliberate with her pounding.

Other times, she full-0n smashed. 

However she did it, though, it sure was fun!

She’s got the beat

Ever since Piper was tiny (as in not-able-to-hold-her-head-up kind of small), she’s been able to pulse her hands to the beat, usually at church (I always kind of figured that the live version was much more obvious).  I always wondered if it was coincidence, but she just kept getting better at it. 

And now that she’s learned to clap…  well…  Let’s just say that she tends to be the entertainment for the folks sitting around us on Sunday mornings.  I don’t put her in the nursery yet so she gets to practice those rhythm skills frequently.  She loves music time!

 

This weekend, I let her stand up on the chairs in front of us.  She kind of leaned against the backs; I just kept my hands at her sides to keep her from falling. 

She danced.

And clapped.

And danced some more.

I can’t believe that she has rhythm, because heaven knows, I sure don’t, and I don’t know what it’s like to have it.  Certainly a trait she got from her dad (did you know he played clarinet in the Marines???  That must mean something…). 

She’s definitely a music-bug.  She loves anything that makes music when you bang it (including celery sticks hitting her tray) and listening to the Veggie-Tale/Disney/miscellaneous-not-so-annoying-kids’-songs channel on Pandora.

More than anything, though, she L-O-V-E-S playing on our piano.  Especially now that she can sit there by herself.  It’s a little hard for her to get the right angle to push the keys all the way to get noise, so we use the Bumbo as a booster seat.

I’m sure that Luke can’t wait until she’s old enough to get music lessons.  Although I do believe that would require her being taller than the instrument, which would be easier if she takes up the clarinet as opposed to the saxophone. 

I think that we’re going to try and get into a Kindermusik kind of class here in the near future, because I really think she’d have a kick.  And now that flu/RSV season is coming to a close, I can turn off some of my paranoia. 

However, if the current size of her fingers are any indication, it may be a long time before she’s able to pick up an instrument.  Finger extenders, anyone???

Celebratory Swing

Guess what we found today?

That’s right!  After much heartache, we have finally found a local park with BABY SWINGS!  So, Piper celebrated her very first World Down Syndrome Day (3/21—so punny!) with church (where she was, pound-for-pound, the most enthusiastic singer, dancer, and clapper of everyone there), a trip to Costco (don’t scoff), and some quality time at the park under the crystal clear skies, warm weather, and melting snow.

  

It was a little breezy, which she hates, but was willing to put up with it for the swings.  I think she really liked that part!  She did the slide with Dad, too.  She tasted the grass, which she learned she did not like, and watched some bid kids on the swings.  All that work really tuckered her out, and she fell promptly asleep in her car seat on the way home. 

…and much to my delight, she’s still sleeping.

A P-A-R-T-Y for Piper!

Petechiae have no idea…

…what the spots are, or why she has them.  And neither do the doctors.  I realized that I never posted anything more on them, so here goes.  We went back to Children’s on Thursday; they are still there, but they are starting to fade.  She definitely has actual petechiae in a few spots on her arms and legs (although I think they’re just about completely gone), but they’re less concerned with those than they are with the big bruise-ish spots on the bottom of one of her feet.  Our discharge notes officially stated that “other indications such as leukemia seem unlikely”, so we’ll take it.

Her CBC on Monday showed that she may be fighting a little virus or something, so hopefully it’s just a side effect of that.  And on that note, if this is my child fighting an infection, I think we’ll live.  She has yet to actually get sick (if we chalk her stomach junk up to the gallbladder), not even so much as a cold (a few slightly stuffy noses…), which, I guess, is relatively uncommon amongst kids with Ds.  And maybe that’s why- maybe she has gotten a couple bugs, but she’s been able to fight it without us ever having known about it. 

This is what Piper felt about her trips to the doctor this week. 

Although, I still think she did it on purpose because she was having withdrawal. 

Spring has UNsprung…

We had a simply MARVELOUS day yesterday.  Temperatures actually hit 70°.  We were in HEAVEN.  Crocuses and daffodils have finally reared their pretty little heads.  It was so nice.

 

Today, however, is another story.

It keeps snowing.  Hard.  This was first thing this morning.  Some reports say that it’ll snow through tomorrow, others saying that it’ll end tonight.  It certainly hasn’t let up yet.  I put Piper outside for all of about 15.5 seconds, came in, and we were both soaked (me more than her, of course) because of all the really wet snow coming down.  It was so nice yesterday that nothing’s sticking to the streets; hopefully it’ll stay that way. 

Piper?  Oh, Piper’s enjoying the day today.  Pajama day for her, and not doing anything for the first time in weeks. 

Even babies need a snow day here and there.  

Fashion FAIL

I’m a bargain hunter.  Truly.  I’m cheap.  I admit it.  The clearance rack at Gymboree is my current favorite (for those of you who haven’t looked- O.M.G).  So, last year at the end of season, I did my shopping for this summer. 

I, admittedly, got a lot of “those looks” while I purchased my 3-6 month wardrobe for my child who was already four months old.  I’m sure all the clerks thought I was crazy, and had the “oh that dumb first time mom- does she not realize that babies GROW???” chant going through their minds. 

Little did they know. 

I almost gave in several times, seriously contemplating going up a size.  For some reason, though, I knew I didn’t want to go any larger.  And it was a good thing.

The weather’s been  nice here.  Short-sleeved nice.  I don’t have but a couple short-sleeved, non-undershirt 3 month shirts, and all that I do have she already wore this week (and were, for the record, bought for her to wear last summer). 

So, while trying to get her ready this morning, I, like the mother of any growing baby, looked in the closet to see about breaking out some of her oh-so-cute summer clothes that I can’t wait for her to wear.

<<wah wah waaaah>> 

This is a 3-6 month dress and an attempt at Easter pictures…  Looks like an ill-fitting hospital gown, if you ask me…

Shirts look like dresses, and the necks are almost as wide as her shoulders.

So, it’s mid-March.  We have about a month and a half before short-sleeved shirts will become a daily necessity. 

Surely, surely, by then her shorts will stay up on her tush, and her shirts will look less dress-like. 

Believe me.  I’m almost tempted to invest in washable diapers for the sole purpose of the added padding in the rear.  Doesn’t do much, though, for superfluous length.

I’m now on the lookout for (cheap, of course) 3 month, non-onesie (she’s going to be too long for them soon) short sleeved shirts.

I did not see that one coming.  If I had, I could have bought them on clearance.  Darn.

Lessons from Nana, by Piper

Today, my Nana took me to the mall while Mom finished her stuff at work.

Nana likes to teach me new things.  Today, she gave me my very first driving lesson.  I’m not sure why Mom has never let me ride like this-  this is how a girl should travel!

Nana said it worked out really well, because she could just push me and she didn’t have to hold on to the stroller. 

I agreed.  Plus, I was very impressed with my driving skills.  Maybe next Nana’ll let me have a go with her minivan?  I know Mom and Dad won’t let me, but Nana might. 

Maybe if I ask really nicely and do a pattycake for her?  I do have her wrapped around my little finger, donchya know.  It would only get better if I could figure out how to blow kisses.  Maybe that’s how I’ll get the car keys…  Watch out, Grandpa!

Park-n-Ride

Saturday, it was 60 degrees, sunny, and gorgeous.

Piper asked very nicely if she could go for a ride in her wagon. 

We decided it was high time we take her to the preschool playground up the street.  I was hoping that they had toddler swings there.  I was pretty bummed that they didn’t; we’ll have to go on a hunt around the area to find some.  There’s probably a dozen or more parks within walking distance from our house (one of the only benefits of living in an HOA community), so surely there are some somewhere.

But, since there were no swings, we decided to try out the slides.

They had the little jungle-gym-cube-slide-thingies at the playground; it was just right for Piper to give it a whirl.  She was not too sure about it, but still sat nicely on top for the photo opp.  Unfortunately, it was so bright out that my camera had a hard time…

She was very proud of herself for her bravery on top of the big, scary thing. 

I’m so sad that the pictures didn’t turn out as well as I had hoped; we’ll definitely need a repeat session soon. 

Not today.

It was bright and sunny and warm on Saturday.

Sunday and Monday it snowed.

Good ol’ Colorado…

Shameless plug for our doctors

I don’t know if I’ve ever talked about Piper’s doctors.  Not really, anyway.

We see the Special Care Clinic at The Children’s Hospital here in Denver.  We L-O-V-E them.  Seriously, absolutely, completely and totally love them.  They’re similar to the Down syndrome clinics that other cities have, only they see all medically “difficult” kids.

It is absolutely the best place for Piper to be.  We have a couple doctors that we always see, if they’re in clinic that day (all of our scheduled appointments are with them, of course).  If they’re not, like today, we get squeezed into someone else’s schedule, with no issues. 

The best part is that it’s a one-stop shopping experience.  I called at 8 this morning, 15 minutes later had an appointment for 10:40.  We checked in, and before I had even paid the receptionist, the check-in nurse was calling us.  She walked us to our room, and we saw a doctor by 11.  They (the doctor and two residents) sent us down a different hallway for a blood draw (which took less than 3 minutes total from the time we signed in there) and headed back to clinic.  During that time, the doctor and his residents went upstairs to chat with the Chief of Dermatology.  While we waited for the test results, the dermatologist came in and checked out Piper.  By the time he was done, the clinic doc did a thorough exam of Piper, and then blood tests were back.  We have instructions to go back on Thursday morning (to see the doctor that we saw today, so we don’t have to start at square one explaining again, which I’m a fan of), and if the spots are still there, the dermatologist is going to come back down to our clinic to have another look. 

We got there at 10:30; we were out, with everything, including the blood results back and follow-up appointment, before 12.  The doctor spent a good hour with us, in our room, not including the time he was upstairs talking with dermatology. 

And, to make things even better, we love the doctors!  The dermatologist had a Mickey Mouse tie on, and red Converse tennies. 

So, those funny red dots on Piper’s toes are what precipitated all this today.  I called the nurse line this morning, really looking for justification and a “it’s probably nothing” response.  She said it was definitely not “normal”, and that she wanted to get us in to see a doctor, not the NP, today.  Not what I particularly wanted to hear, but I also felt a little better that I was justified in my moderate freak-out yesterday.

She has some petechiae on her arms and legs, but the things they are most concerned about are these hard-ish, bruise-like dots on her feet.  They appeared, out of the blue, yesterday.  They’re starting to dissipate, and they’re not as dark as they were, but they’re definitely still there.  To rule out Leukemia, they did a CBC today.  Her platelets are fine, although her white blood count is low and her lymphocytes are high, which probably just means she has a little viral infection.  It’s odd, though, because she has no other symptoms- she’s happy happy, no fever, eating fine…  It’d be nice if that’s all they are!  The dermatologist said that he doesn’t particularly want to biopsy them, mostly because they’re on the soles of her feet and will be very difficult to heal (ha…  didn’t see that pun coming…), but if they don’t go away, he does want to make sure they’re benign and nothing to worry about. 

I think that Piper decided she didn’t want to go a full three months without seeing her favorite medical professionals.  The clinic is really good about giving kids positive visits on occasion, even if that means putting off vaccinations, for example, for a few weeks.  It’s nice that they try really hard so that these kids, who are bound to be there more often than typical kids, aren’t horrified of all their visits. 

However.  They may be doing too good of a job. 

Surely there’s some middle ground between hating the visits and creating odd things to buy your way to see them. 

Tiny Toes

Piper sometimes surprises us with her tininess.  I often wonder if I’m exaggerating how small she actually is.  Recently, I’ve been wondering if she’s close to outgrowing her size 0 tennies.

Size zeroes are for feet a little over 4” long.  Here’s Piper.

That’s right, folks- a whopping 3.25”.  When she’s standing.  That explains why the adorable size ones we have look gargantuan on the bottom of her scrawny little legs.  In fact, we have  a pair of Mary Janes- her toes go to the opening; no further. 

I wore size ones at 1, twos at 2, and so forth for many  years.  I remember crying over the fact that, in second grade, my shoes still had square toes (yup- toddler shoes), while all the other girls had pointy toes.

Looks like Piper’s well on her way to the same dactyl deficit. 

**on another note- these adorable little toes have some funny red spots on them today…  Hopefully it’s nothing, but it can be a sign of some pretty nasty things.  We’ll call the doctor tomorrow (I knew our three month hiatus was too good to be true)- pray  it’s nothing!**

Going GREEN!

Every year, our family gets together for Saint Patty’s dinner.  We claim to be part Irish (although that’s not saying much—we claim to be part everything). These dinners are about as authentically Irish as we are.  Really what it is is an excuse to eat anything and everything green.

In order for it to be at the table, it has to be a part of the color theme.  The corned beef is allowed to be red (alleluia), but green milk, green beer, and green jello salads have all been regular attenders at our annual festivities.

Justin and Rachel bought Piper this cute little dress last year.  I promised Piper that I would let it slip that it’s a newborn sized onesie…  Oops.  It sure was cute, though!

Piper got to chew on a green bell pepper to get her eating game face on.  She actually liked it!

Rachel and Piper, apparently, coordinated with each other- who’d have thunk that pink and green would be so cute together?  And they happen to be the only blond-haired, blue-eyed folks in the group!

Justin and Piper told jokes to each other.  I heard whispers of Justin stealing our baby food maker to make sardines for Piper (insert gagging GAGGING face here).  That resulted in a swift smack to the head (if only figuratively).  And we’ll be watching the Beaba very carefully when Justin comes to visit.  Much to my dismay, Piper thought it was funny.

I think I’ve said before that I blame Piper’s dislike for peas and beans (some of the only green veggies she’s gotten in baby food form) on my father’s disdain for anything green.  Needless to say, our all-green themed dinner…  well, Dad focuses on the corned beef and potatoes, I do believe.

He showed his overwhelming support for the holiday by following the strict dress code.  

He was the only one not wearing a green shirt. 

Way to be original, Dad.