Growth Charts

I’ve admitted before that I’m a number person.  I’m also a fairly visual person, so I really like to see the facts to know what they really mean.

A few months ago, I was looking at the Ds growth chart (trying to figure out what size of clothes to be looking at for the next couple seasons), and figured out that, by age 3, Piper’ll be closer to her peers than she is now. 

So I took the CDC growth chart for typical girls and plotted the 5% (because that’s where Piper sits) on the same chart.  (MedCalc has a Ds chart that uses the 5% and 95% instead of he 10% and 90%- I was looking a few months ago and couldn’t find one.  They also will adjust for prematurity at the same time.)   I thought it was kind of interesting, and thought you guys might, too. 

Just that dumb ol’ curiosity…

I love the way that, between 10 and 16 months, Piper was IN the informational box.  Pretty sure that’s not supposed to happen.

Notice that, between about 16-18 months, the discrepancy is the greatest.  She’ll start catching up (if you can call it that) now.

By the way- did you know that they’re in the process of redoing the Ds growth charts?  In a couple of years they should be all ready for mass usage.  I’m really glad that we don’t have them yet- they anticipate the curves to increase considerably (they haven’t been done since the 80’s, I think), which, I have a feeling, will leave Piper in the dust.  Hopefully by that point, she’ll be a little higher on the curve!

Int-Ro-Ducing…

My, officially, NOT toothless child!

That’s right folks, after almost 18 months, my kid, finally, has a tooth.

At least the start of one.  As in, it just cut through and you can feel it more than you can see it.  But still.  It’s there.  The kid has a tooth.

So, in my moment of celebration, I decided (dumbly) to try and get a picture.

 

Oh, the horror…

Happy Halloween!

(This picture is mostly funny because she got a glimpse of the goats again.  Those dang goats.  At least, with a goat, we never have to worry about the “he followed me home from school so I can keep him, right???” conversation that would inevitably ensue…)

Bewitching Bovine

(The concerned face in this picture is due to the added fluff in her tush- she looked like those weighted punching bags trying to sit at first.  It cowed her, that’s for sure…)

(The cutest bov-hind I’ve ever seen.)

Questions

It always interests me to discover the questions people have about us, about Piper, and about Down syndrome in general.  I would much rather people ask questions and get the right answers than sit and wonder, or have incomplete/inaccurate answers.

So, on that note, I’ve had a couple of comments lately that pertain to Piper and her surgeries.  Thought I’d clear the air and answer on here, too.  Chances are someone else has had the same questions!

The one that’s come up a couple times lately is if ALL of Piper’s problems are caused by her having Down syndrome.

The biggest thing Piper has faced was her prematurity.  I’m fairly certain that her being a preemie, not strictly being born with Ds, was the cause of some of her sensory issues (all of which have gone away at this point, but the most obvious was her ability to OVER-stimulate easily), a lot of her difficulty in growing, and her difficulty learning to feed…  However, she was NOT born early because of the Ds.  Fact of the matter is that no one knows WHY she was failing in utero- it was likely just a fluke.  Not all babies born with Ds are premature (although many are born preterm- after 36 weeks- and lots seem to be born by 38 weeks).  Because of her prematurity, we get to adjust her skills by two months to determine any delays, plan goals, and know what to work on.  In other words, instead of looking at her like she’s 17 months, we look at her like she’s 15 months.  In the first two years (at two, the adjustments stop) those two months can make a huge difference!

Next are Piper’s surgeries.  She’s had three major ones:  one at birth to correct the Duodenal Atresia (where the intestine and the stomach are not attached correctly), one at 9 months to have her gallbladder removed, and most recently at 16 months to correct airway issues.

Duodenal Atresia is a marker for Down syndrome.  We do blame that on the Ds.  If she didn’t have Ds, she’d likely not have had DA.

The gallbladder was a side-effect of being a preemie and her DA.  While the DA site was healing, she wasn’t allowed any oral feeds.  And because was so teeny, and a preemie, they took a long time to get up to full oral feeds.  So for a period of weeks, she was fed purely by IV nutrition.  In some kids, the TPN (Total Parenatal Nutrition) causes gallstones.  And that’s what happened with Piper.  They started causing problems when she was about 3 1/2 months old, and by Christmas, I was convinced that we needed to have it removed.  Turns out to be a wonderful decision- she’s done a lot better, in lots of areas, since then.

Finally, the airway issues.  This, again, was not caused by Ds.  Kids with Ds are more prone to have vascular issues of one kind or another, and that’s what they thought was going on at first.  But when they looked at her heart, and all the arteries and veins involved, they could find NO structural abnormalities.  Essentially, it was her TRACHEA that’s misplaced slightly further to the right than it should be.  And EXACTLY what Piper has is VERY rare, for any person.  Certainly not something that’s associated with Ds.  Not that it made it ANY more fun to deal with…

I really hope that any other questions people have they feel free to ask.  Sometimes I feel like people are afraid that they’ll offend us if they bring something up.  Certainly not the case!  Please feel free to ask away!

I think that Ds can appear a lot more scary than it really is, and than it should be.  I don’t want Piper’s experiences to scare people off.  Truth be told, outside of (despite?) these admittedly big things, Piper does very well for herself.  Ds is big, yes.  But scary?  Something you can’t deal with?  Absolutely not.  Besides, who wouldn’t want something this cute???

Pumpkin Patch, cont.

The BEST part of the pumpkin patch was getting to see all the farm animals.  They don’t have an actual petting zoo, but they do have quite a few beasts that you can get really close to.  And I think that was just fine for Piper.

First she saw the giant Clydesdale horses.  I wasn’t too sure what she’d think about them, being so big and all (the first time our dogs saw horses, I could hear them saying “Oh my gosh- those are the biggest dogs I’ve ever seen…”  I’m pretty sure Piper shared that sentiment), so we watched from a distance for a second first.

Then she started pointing and leading me up to them.

She showed me their noses, their eyes (which I’m sure they really appreciated), and reached up toward their ears.  She pet so nicely; the rancher was enamored by her.

The absolutely, hands-down, unequivocal best part, though, was the goats.

That’s right folks- the goats.  The kid’s got <ahem> taste.  She talked, squawked, and squealed at them.  Even when we had finished and were a good 40 feet away. 

She’s hoping that these pictures will encourage her grandparents, who live on a farm, to buy her one (to keep there, of course.  Oh, please, to keep there).  Christmas is coming, after all.

One month later (a week late)

I can’t believe that it’s been 5 weeks since Piper’s surgery.  Man, oh man, has time flown! 

Piper celebrated her 5 week anniversary by sleeping through the night for the first time since going into the hospital (actually, that’s a lie- she slept the first night, and then decided it was overrated.  I, however, have not shared that perspective…).  Guess that means she’s on the mend!

She celebrated her four week anniversary with a big-girl bath!  Complete with lots of bubble blowing, chest-soaking, splish-splashing FUN!

The incision itself is looking pretty good.  We’re hopeful that it’ll get less and less noticeable as time goes on.  I think it’s still a little tender (although, admittedly, her pain threshold is a little tender, too, lol) because she doesn’t really like me touching it.  At all.  She’s really defensive about her chest still (and the muscles in her shoulders, too), and doesn’t even like some of her shirts that rub her funny.  I have to keep her from scratching  a lot; it looks so painful when she’s pulling on it.  I do think, though, that it’s getting better, so that’s what matters.

Her sticky-outty sternum is still there, although I do think it looks a little bit better every day.  I’m pretty sure that she’s probably inhaling in this picture, which makes it stick out more, but it definitely didn’t do it before.  Kinda breaks my heart a little, but again, hoping that it settles down as she gains a little weight and the bones heal more.  Better to have a sticky-outty than having no idea what’ll happen if she got a cold, right?

Lifting the lifting-restrictions comes next- and I couldn’t be more excited.  Since she seems to be a little tender, I’m not sure that we shouldn’t hold off until closer to the 8 week mark for doing lots of under-arm holding, but it’ll still be nice to do little bits here and there.  Woohoo.  Can’t believe it’s almost over!!!