Aimee's Bowl of Cherries

Potty Q&A

2012-02-01T20:31:00.001-07:00

For the record, I was not anticipating STARTING to potty train Piper until this summer. I was hoping that maybe, by the time preschool started in the fall, she’d be starting to get the hang of it. But, apparently, just like everything Piper does, she’s been watching, analyzing, and figuring it out long before I knew. After a few times of her telling me she wanted to go potty, I decided that I really needed to give it a go. Even if I so did not have it budgeted into my schedule right then…

A couple of answers to questions and a few of the tricks I used:

We went straight to panties and kept her in them whenever she was awake. She still uses a diaper at bedtime and for her naps (although she stays dry about half the time for naps now- hoping that we’ll be able to phase them out soon.) I found that the Hanes brand at Target were the smallest around the waist. I bought a BUNCH of pairs, took them home, and washed them in as hot of water as we could. It shrunk them quite a bit, and although they’re baggy, they at least stay up around her middle. My mom had bought her a lot from Gymboree, that are WAY cute, but they were too nice and just didn’t shrink enough (which is actually a good thing- hoping that she’ll be able to have fancy panties when she goes to preschool.) I looked at Fruit of the Loom, but they looked like they would wash about 2.4 times and then die, and I knew that we’d be washing them a few more times than that…
We used cling stickers to the bathroom mirror as her reward. They were BIG, she got her choice of which one she wanted, and it gave a visual reminder of what she was supposed to be doing. She’d ask several times a day to go look at her “st st st” and we could take her in to see how many times she’d been potty. They were well worth the buck a sheet at the dollar store. They’re still up on our mirror, but getting ready to get taken down. She hasn’t asked to see them in a few days, so I think it’s time they retire.
I will also admit that we used the training potty…. in the living room. It served several purposes- it was always in eyesight, so she was constantly reminded about it, we spent lots of time on it in the early days and I could distract her with the television while we waited, and I could watch Adalynn a lot more easily, too.
There were times when it was a “game” to see how long I could keep her sitting. The biggest issue with that, of course, was her attention span and willingness to sit. We watched this video and this video about 1.3 million times. Both are worth watching, by the way. The dog one, however, has had the unfortunate consequence of being something like Pavlov’s dogs- she watches it, and it invokes her peeing. Almost without fail. Which is great, except when I’m typing this post and she’s sitting on my lap. It’s not watched as much these days…
Once we conquered pottying at home, we had to conquer pottying away from home. There is no way she’d be able to sit on a regular toilet- her little fanny is just too narrow. So, thanks to my mom, we have a potty seat with a nice bag (to camouflage the seat, obviously) to take with us. The fold-up seats aren’t really meant to shrink the seat, so I think that, for the time being, this is our best bet.
We’re working on getting her to VOICE the need to go more efficiently. Her “word” for potty is popping her lips, and because of our voicing issues with her, she sometimes thinks she says it without actually saying it. I can usually catch her with body language as she’s usually really antsy. And often squawking. Seems to be, though, that the more she has to go, the less she’s thinking about voicing. If I look up, she’s often lipping the word with no noise. Frustrating? Yup. But we’re getting there.
She’s still too short to get up to the big potty without any help. Even with a step stool. I really like the idea of these, but not sure I like it $130 worth. Anyone use one?

I think that’s about it. I won’t disillusion you and say that it was easy. Those first few days were… intense… (I was just about ready to give up one morning, and by afternoon, she’d pottied every time ON the potty…) but once she got going, it really wasn’t too bad. I looked at some of the three-day methods, but I just couldn’t quite get on board with some of the parts; I just felt like she was too young to make her sit on the potty first thing in the morning for as long as it took to go potty (“hours, if needed”.) So while that was our goal, it wasn’t really the way I wanted to go. To each his own, right?

Bye-bye Onesies!!!

2012-01-26T08:24:00.001-07:00

Piper decided last week that it was time to start pottying in the potty.

So I went to the store, found the smallest panties I could find, washed them in HOT water so they shrunk, and we started midweek last week.

And guess what? It’s been DAYS since she’s had an accident.

She potties. She poops. She even potties at the store.

Holy moly, I was NOT expecting this!

Eight Months

2012-01-25T20:56:00.001-07:00

Adalynn turned eight months old this weekend.

I think she’s getting cuter every day. She LOVES her big sister and is constantly following her around the house. She’s learned the sound of the bath tub, and the girls have races down the hall to get in. Both squealing in delight along the way, of course.

Her hair has not grown. Pretty sure we’re looking at kindergarten for pigtails on this little twirp.

SHE HAS TEETH! Piper cut her first tooth at 18 months. Addy was just shy of eight. Those little monsters were NOT fun coming in, and they weren’t particularly delightful as she learned to nurse with them (um, didn’t miss that part with Piper…), but I can’t wait for them to be big enough to see when she smiles. You can see them poking up on the bottom here.

And speaking of smiles? She has perfected the cheesy grin. And I can’t help but crack up when she does it. Our photos are now screwed until she gets her fill of it, but that’s okay. I think.

She HATES food. Seriously. With a passion. She will tolerate apples, pears, and yogurt. And by “tolerate,” I mean maybe a tablespoon at a time. She does not like: avocados, sweet potatoes, bananas, carrots, cereal… Get the idea?

She’ll walk across the room with the walker. Well, she’s able to walk across the room so long as Piper doesn’t “help.”

She’s incredibly leery of strangers. Some days are better than others but, man, she can give some serious crusties to someone she doesn’t know. Which is pretty funny in comparison to her sister, Miss Social Queen herself. When she’s in a good mood, though (which I’m pretty sure means that she has a LITTLE bit of sleep), she’s willing to give a wave to someone who looks like a grandma. And yes, my kids pretty much think that Costco is the local version of Disneyland. It’s got to be the most fun place on earth.

And she thinks this is hilarious. So does Piper. We use this method of transportation frequently. It also, by the way, has been a great source of proprioperceptive input that Piper craves. She loves this!

She says mama, dada, Piper, dog, hi, and bye in context. Yup, she’s a talking maniac. And it’s way cute. Like, seriously. She waves hi and bye, and signs dog, too. She’s also said “Hi, dog” to Duncan when he startled her the other day.

Happy two-thirds birthday, Munchkin! Can we celebrate with some sleep???

The Sleep Drama continues

2012-01-24T20:55:00.001-07:00

I’m not sure how Addy could have possibly celebrated her eight month birthday this weekend.

Maybe that’s because time has warped in some horrendous way due to her inability to sleep.

This weekend she went several nights where she was up at least every 45 minutes to an hour. All night long. NO stretches of sleep. And, of course, she doesn’t play nicely in her crib or anything. Actually, she screams as though to say “where the heck am I and I’m sure that the boogie man is going to get me!” Which is doubly fantastic since she shares a wall with her sister. Fantastic.

And it’s not something that I can just put her back to sleep and wander back to bed. No, no- usually these episodes leave her awake for several hours at a time.

She’s on a schedule. She goes to bed early. She sleeps during the day (when she does, of course), but not so much that it should affect her night time slumber.

I’ve spent many nights in tears because I’m so gosh. darn. TIRED.

Anyway, flash forward to last weekend. We met some friends up north and we went to a park to let the kids play (more on this later.) Adalynn and one of her little boyfriends fell asleep in the swings together. Addy was OUT, but her feet kept kicking. We laughed that it looked like she had restless leg syndrome. For kicks, when I got home, I Googled it.

And, wouldn’t you know it, it made sense. I always thought that it was a load of hooey, to be perfectly honest, but I found some studies done through Mayo Clinic, so I trusted what they had to say. They said that one of the precursors to RLS is a low iron level. So, I Googled THAT. And one of the risk factors for low iron is having a low birth weight- specifically, being less than 6 1/2 pounds. Addy, if you remember, was 5 3/4.

So, I emailed her pediatrician and asked if this was something worth looking into. I drove Addy down to Children’s for a blood level the next day. Found out yesterday that she DOES have low iron!!! Go FIGURE!!! Tonight I picked up the 16 ounces of ferrous sulfate (her daily dose is 2ml- should last a while…) and started. Please, oh pleeeeease, let this work. I fully expect to have to break her of a LOT of bad sleeping habits at this point (the kid HAS to be nursed to sleep…) but surely, surely, if we can rule out the medical reasons, we can deal with the behavioral ones.

Because this little girl has GOT to get some sleep.

…and so does this mama!!! Wish us luck!

A week of updates

2012-01-24T20:10:00.001-07:00

It’s been busy here. Really busy. With a few BIG things, which I’ll get to, and a few not-so-big things, too. There are several things that I need help with, so I’ve decided that this will be the week of updates to try and get caught up on our month of staying home, nice weather, meeting friends, and playing, playing, playing!

A break from the winter chill

2012-01-12T20:46:00.001-07:00

Piper’s teaching Addy to dance here. Do you like the flapping arms??

And it started

2012-01-11T16:43:00.001-07:00

It started here…

…which led to this:

…and brought us here. To a full-time stander-upper-on-anything. One-handed, even.

Oh yeah- see the stance in the above picture? It’s because she’s cruising, too. Yup. Our house is about to get a lot more busy.

And a lot more bruised.

Christmas Pictures

2012-01-11T16:16:00.001-07:00

Yup. It’s nearly the middle of January, and I’m just now getting around to Christmas pictures. Yikes.

Anyway, two years ago we found out that Christmas is a whole new monster when a baby is involved. This year, we found out that Christmas is a whole new monster when there are THREE kids involved- Piper, Adalynn, and my nephew, Bridger, sure made the day a whole lot more fun. But a whole lot busier, too!

We got to my parents house first thing Christmas morning. We got to have breakfast together with my parents, my brother and sister-in-law, my grandparents, and my great aunt, who was visiting from Arizona. It was so fun to have everyone under one roof! Breakfast was, of course, amazing (thanks, Mom!) Mom put up a gate into the rest of the house so that Piper couldn’t go and snoop around the tree. Hummm… I wonder why?

I snuck out first before Piper could so I could watch her face…

Not the best picture, but do you like her tilt? She was excited!

She ran into the room and found out WHY! There was a kitchen set (that was mine when I was a little girl), a new table and chair set, a grocery cart, a baby stroller and a new baby bed. The kitchen, stroller, and baby bed were all mine when I was little. My dad and grandad made the kitchen and bed and got tons of use through the years; I’m so excited to share it with my girls!

Also in the room were TWO new cars. I found a Little Tykes pickup truck and a police car at garage sales last summer. Luke spent WEEKS sanding them down and repainting them with special plastic paint to make them cute. My nephew got a brand new, shiny red fire truck and the girls got a girly pink beepbop car. (I’m in the process of getting stickers made for both; I’ll show you the finished product when they’re done. But you get the picture.)

Piper was excited.

Piper wasn’t satisfied with Addy’s present-opening skills, so she thought that some tutoring was in order.

By the time everything was opened, the girls were POOPED. Piper had a blast looking at all her new fun things and teaching Addy and her cousin how to use theirs. But for this mommy, nap time couldn’t come sooner… Piper fell asleep wonderfully (as usual), and Addy finally, finally, fell asleep. Under the tree. With her brand new blanket that Mom made her (with crib sheets to match, by the way.)

What a fun, fun day!

Peppermint, please

2012-01-03T13:14:00.001-07:00

She won’t eat pears. She won’t eat cereal.

But she WILL suck on a candy cane. What the heck???

The cane was wrapped, but it had a little hole in the bottom. She was sucking on it hard enough that she was getting her own peppermint-flavored spit back out. She liked it. A lot. Go figure.

Piper the photographer

2012-01-02T19:53:00.001-07:00

When we took the girls to the doctor a few weeks ago, we had a bit of a wait in the room. Piper wasn’t in the mood to stay still for any period of time, so she went through my “planned” activities quickly.

So we moved on to her ideas. I suppose it was just a matter of time…

I helped her with the first one:

And then she flew solo. I gotta say- she didn’t do half bad!

She got a better picture of my mom than most of mine! Go figure.

Well hello there, 2012

2012-01-01T20:44:00.001-07:00

12 things I’m looking forward to during the next year:

12. Getting down my Christmas decorations <<ahem>>
11. Luke (maybe?) doing some work with a band of former Marine musicians.
10. WaterWorld this summer- Piper will be big enough to go this year, and I want to go!
9. NDSC anyone??? (July. Washington, DC. You’re going, too, right???)
8.More decorating for the holidays and seasons. Thank you, Pinterest- you’re about to cost me a whole lot more time. And money. But it’ll be fun!
7. Our TEN YEAR wedding anniversary in June. Surely it’s an accounting error.
6. Working on starting a Moms group for the local DSA chapter.
5. Doing First Response calls for the DS group.
4. Addy leaving the baby stage and turning into a toddler. I will definitely miss having a baby in the house again, but surely, surely, this will also mean I can get some sleep. Please???
3. Piper talking more and just maybe getting a glimpse of some of the random things that are flying through her little brain.
2. Piper starts preschool this year! Excited? Nervous? Anxious? Yup. Sounds about right.
1. I will get better pictures of the girls together. I WILL. Because, really, these leave a little to be desired.

What are YOUR big plans for the year???

Our Year in Numbers, Vol. 2

2011-12-31T22:03:00.001-07:00

Piper, January 2011

1- New member! Addy Jayne- 5 pounds, 12 ounces of pure cuteness came on May 22. Definitely the highlight of the year!

1- New nephew! How fun to have more babies in the family!

3- Days spent in the glorious Colorado mountains with friends

2- Nights spent in Vail at the Colorado PEP Conference- without the kids!

4- Haircuts Piper has had! Three of which I’ve given her myself. And we both lived!

19- Teeth Piper has (finally) cut- and it may be 20, but she won’t let me see…

5- Times Piper has gone to the doctor (single digits?!?! Is that even possible???)

17- MY doctors appointments with Adalynn (I WIN!)

300- Low-end estimate of new words and signs learned by Piper

2, 6, 3 1/2- Shoe sizes, pounds, and inches gained by Piper

8, 6- Pounds and inches gained by Addy

224- Days since I’ve slept more than 4 hours at a time (yes, I counted)

82- IQ points I’ve lost as a result

It’s been a great year- we are so blessed!

Here’s to more more hugs, more fun and more adventures in 2012!

Oh, the DRAMA

2011-12-30T22:57:00.001-07:00

So the girls and I were out the other day trying to get some Christmas shopping done. By the time I had run our errands, it was darn close to nap time for Piper, so I had two options- attempt to make it home, Piper falls asleep in the car, and wakes up too soon from her nap because she’s hungry, or take her and I out to lunch, feed her, and then she could fall asleep in the car on the way home. I opted to pick up lunch quick. Adalynn didn’t approve of my decision, and had a meltdown on the three minute drive. After some pretty intense ~~screaming~~ fussing, she fell asleep for a few minutes. All of a sudden, Piper started falling apart in the back seat. Addy, of course, woke up really upset because she was scared, so I looked in the mirror to find this:

Piper got her hat completely turned around on her head- and she couldn’t see a thing. She was completely freaked out because she had no idea why she couldn’t see.

Me, being the incredibly sympathetic mommy I am, could only chuckle ~~and take a picture~~. What else can you do? There was no where to pull over to help her, I couldn’t reach her when we stopped at the lights, and talking and singing didn’t do a thing. Poor munchkin. It was pretty funny, however, when I realized what was going on (despite having two screaming girls in my backseat.)

So we finally get to Chipotle, I clicked Addy’s car seat out and walk around the car to get Piper out. It was right after a pretty decent snow storm, so there were snow banks on the curbs of the parking lot. Piper, of course, fell on the ice-melt and bunged up her little hands. Melt down #2.

Then she realized where we were, and wanted to eat N-O-W. Melt down #3.

So did Addy- Melt down #4.

I finally got our food, Piper settled into her high chair, got me my pop (thank heavens for caffeine, yes?), and got Addy nursing (under her double-layered minkie blanket because I didn’t grab a hooter hider from the car…) It was quiet for a few minutes. Until we were ready to undo it all and head back to the car. A nice guy took my tray for me (which I desperately appreciated) and we high-tailed it outta there. Thankfully it wasn’t our normal store; maybe, just maybe, they won’t recognize us next time…

…but I still think the hat is pretty hysterical.

I’m sure I’m not prepared

2011-12-30T22:20:00.001-07:00

Oh me, oh my. These two are destined for a world of trouble. I can’t wait!

Alleluia Chorus

2011-12-30T22:07:00.001-07:00

Addy auditioned for a solo during the Christmas Eve service at church.

The high notes were, regrettably, out of her reach.

Santa Number 3

2011-12-30T22:05:00.001-07:00

Piper’s really into playing pretend these days. I think I’ll join her and pretend that I’m not nearly as overdue on posting as I am and try like a madwoman to get caught up. Sound good? It is the holidays after all. I have an excuse, right?

A few weeks ago, we were invited to our CCB to visit with Santa (this was time #3 for Piper, in case you’re counting…) To say that Piper had a BALL would be a gross understatement. Santa read her and Addy a story and even got on the floor to play. There were toys to choose from, kids to play with, and adults to run from (all of the service coordinators dared Piper to get past them out the door. Piper won. More than once, lol.) The best part was, obviously, the tray of cookies that were within reach if she stood on the very tip of her tippy toes. She snuck a few <<sigh>>. But that’s what Santa’s for, right???

Addy, really, wanted very little to do with the mysterious man in red.
The glittery present was much more interesting.
And slightly less spooky. And WAY more able to be torn apart.

Piper gave Santa a signing lesson. Literally.
She was “saying” all the names of the animals as he flipped through the book
and kept looking at him as if to say “You’re turn.”

Told you- Addy was way more happy dismantling the shiny red box. She won, by the way.

First Christmas Fun (again)

2011-12-21T21:00:00.001-07:00

LOVE

2011-12-17T09:26:00.000-07:00

Addy’s 6 (and a half!) Months Old!

2011-12-16T21:22:00.001-07:00

I canNOT believe that this little mite is half way to her first birthday. Positively not okay with that, but no one asked me for permission, soooo here we are.

Little Miss weighed 14 pounds today (7%) and they said 24.5” (which I don’t buy- puts her below 3%.)

But what she lacks for in size, she makes up for in everything else. She showed off her ability to pointer-finger (with both hands!) and pincher grasp, her curious nature (as evidenced by her eager attempt at obtaining, observing, and figuring out the lights used to look in eyes, the name badges, the ear scopes, the stethoscope, the paper on the table, and anything else she could look at…), her pretend play with the baby doll, and her ability to get out of a headlock (which was required in an attempt to get a listen at her chest).

And also? Her ability to stay up all hours of the night and be a perfectly (almost) happy little girl. I do NOT understand. Unfortunately (fortunately?) we’re, evidently, not doing anything to facilitate the inhumane treatment of her parents at night time. She can be up all day long (with maybe, maybe two hours in naps) and get five hours of sleep at night, and be ready to play. I’ll go into her room and she just smiles at me. It’s driving me insane.

No, that’s not true- I’m pretty sure I’m already there. The only thing we haven’t tried yet is one of those machines that puts the stars on the ceiling (this is the kind of thing I’m thinking of getting)- Dr. Karen said that some kids just crave that added stimulation when they’re too busy thinking about everything else. And frankly, even if she doesn’t sleep but it keeps her happy for a little while longer, I’m so game.

Something else that she does quite well? When she’s adamant about something, she means it. And I mean she means it. Take, for example, eating solids. I believe her philosophy is “why eat off a spoon when you can nurse”; we’re getting no where quick. My worry has been pushing her to do too much and creating aversions, which I really don’t want to do. Karen didn’t think much about it; she said when she’s ready, she’s ready. Ironic, though, that Piper was “supposed” to be the difficult one and Addy’s the one who ~~not so~~ politely declines… Go figure.

But, my goodness, is it fun watching her learn and grow. She has such a sweet little disposition (even at 3am, I hate to admit) and is one loving baby. She gives kisses like they’re going out of style, crawls into my lap for hugs (or to eat, obviously), LOVES getting nose kisses from Piper (they sit and laugh at each other for ages at a time), and wants to do everything Piper’s doing. She has the sweetest smile and most adorable coo. She’s quiet almost all the time, and is happy so long as she has something (or can find something) to play with. She and Piper are definitely the best of friends- and there’s nothing more fun that watching them together!

Happy Half Birthday, little munch- Just don’t grow up too quickly!

Piper’s Checkup and Thyroid Issues

2011-12-16T20:33:00.001-07:00

Today, we were brave.

I’m not sure who was the most brave, however. Addy, for having to have four shots. Piper, for having to have a blood draw, me for taking both of them, or my poor mom who came along to help toddler-wrangle for the duration.

Yeah, it was a great day.

Adalynn had her 6-month checkup (albeit a tad late) and Piper had “just” a checkup, too. So the logical thing to do is have both appointments together, right???

I’m starting to rethink that philosophy.

Anyway, Piper was 22 pounds even (12-ish%) and was 32 1/2 inches (MORE than the 25% on the Ds chart!!! FIRST TIME EVER!)

We let Piper “go” first with the doctor so that she could get outta there and run around the hospital while we finished up with Adalynn. Turned out to be a good call; she was fed up with the exam room exactly 8.6 seconds after we arrived. And that’s probably a little generous; I don’t think she was in the mood when we left the weigh-in room.

Anyway, Piper’s visit was pretty much just a weight check. But, as usual, I always like to add a little more to the mix. When we were in Vail, we met a guy who has a son with Ds and who also works for Social Security. Piper’s never had a karyotype done after the amnio; we have no post-birth verification that she does, indeed, have Down syndrome. Apparently that’s not so cool (and required for SSA), so we needed to rectify it. AND, apparently, verification from early in life is required, as well, because if you only have verification when they’re an adult, it doesn’t mean that they’ve had it their whole life (yeah- are you rolling your eyes, too???) Anyway, I brought it up with the doctor and she agreed that we really ought to have a postnatal confirmation (as if anyone is questioning it, right?) Timing worked out, though, because we needed to recheck her thyroid today after a few goofy readings at her two-year checkup, so we could do it all in one poke and be done. At least that was the hope… We also got a referral for speech therapy through Children’s (the wait list is several months long to get in; hoping that by getting on the wait list now we can get her in when she ages out of EI in May.)

After her appointment, we wandered down the hallway to the lab. Or, as Piper would call it, The Worst Place on Earth and I HATE You Here. The thyroid screen doesn’t take a whole lot of blood, so they’ve done finger pricks on her before (which are traumatizing, too, because she has to be squeezed the whole time- which she does not like.) But this time, since we were adding the chromosomal study, they had to go in the arm. I was pretty much okay with that (hoping it was better than the squeeze). That is until they couldn’t find a single vein in her little arms. Tried the first arm, went to the second. “Thought” they had a good one. Poked, prodded (Piper screamed. Ranted. Screamed) and dug some more. Finally got the vein, but couldn’t get it to “give” anything. Fantastic. Had to go back to the first arm and try again. You can imagine what Piper thought of that. It was pretty awful. But at least they got it on the first time in the second arm (no digging!) and then she was done quick. Poor kid had red dots all up and down her arms from it. She looked at me with those eyes of “WHY are you letting them do this to me???” I’m pretty sure she was high on adrenaline for a good couple hours after that…

The thyroid tests came back tonight and her TSH is barely elevated, but elevated nonetheless. So I guess we’ll retest again in a few months. And the part that really bugs me is the blood test, not the thyroid. Go figure. Does it always have to be something???

Christmas party!

2011-12-13T21:00:00.001-07:00

Saturday was the Christmas party for Mile High Down Syndrome Association- and we had a blast! There were 360 people there this year, AND we had a bigger venue so there was room to move around. Both major plusses!

Remember this Santa picture from last year?

I was hoping for a repeat of awesome this year, so the girls were dressed in the Christmas fancies for the event.

Teach me to leave Christmas cards until the last minute…

Yup- that’s Piper’s head in the foreground. And yes, that’s as good as it gets. Hoping that the “good” camera they had there will have something more worthy on it, but I’m not holding out hope…

Piper was in such a hurry to get out of there because there was live music this year. She, of course, couldn’t wait to get her groove on and join the small group of dancers center stage. Her “dancing” consisted, primarily, of dancing around in circles until she fell down, and then trying to stand back up again. And with a dress that was a little too long, the standing up, while dizzy, proved to be a little more difficult than she had anticipated.

Other dance steps she auditioned included the river dance:

…ballroom with her baby doll:

…and something that only slightly resembled a chicken pecking corn from the ground:

The two characteristics that I give credit to the extra chromosome are her willingness to dance (pretty sure she’s the first one EVER in 100 generations- at least on MY side of the family…) and her willingness to be in front of people. And I respect that.

Anyway, we had so much fun talking with all the other families, oogling over the new babies, and entertaining some of the bigger kids. Addy even had fun- she was so exhausted by the end that she crashed about 4.2 seconds into the car ride.

…and now all that’s left is getting a suitable Christmas card ready. Dang.

The Littlest Reindeer

2011-12-11T19:25:00.001-07:00

Within the last couple of weeks, Addy has mastered the long-term sit. As in, she can sit for however long she wants, and uses the rotation to the side to lower herself back to the ground when she’s done.

Yup, she’s officially a full-fledged sitter.

She’s so good, in fact, that she can even lean herself backwards as she looks at something on her head and maintain her balance.

How do we know this, you ask?

Is it mean that I kept flopping the reindeer antlers to the front so that she could see them? If she weren’t so cute, she wouldn’t get picked on all the time…

Piper’s Pose

2011-12-11T10:49:00.001-07:00

My new favorite pose Piper strikes when she’s either bored or playing on the floor with Adalynn:

I think I love it so much because it makes her look so big.

Although, I must admit, it’s even funnier when she does it at the dinner table as she ~~not so patiently~~ waits for her plate…

Addy Models

2011-12-09T16:06:00.001-07:00

My mom needed a model for a project she was working on. And since tutus would be significantly less cute on her and her fabric-wielding friends (nothing against them or anything) than on my teeny-weeny daughter, Addy was enlisted.

She minded a whole lot, can’t you tell? She was pretty cute, if I do say so myself.

There is, of course, one being in their house who COULD wear the tutu. She was, however, a much more reluctant participant.

We, on the other hand, got a lot more laughs this way…

Movin’ and Shakin’

2011-12-08T18:02:00.000-07:00

Addy’s, officially, all over my house.

As in, I look away and two seconds later I can’t find her. Because she’s in the other room, down the hallway, under the kitchen table… You get the idea. She’s been on the move forever now, but her distance is improving quickly. As is her speed. And that, my friends, is a dangerous combination.

But if you think that all this action during the day time is making her more likely to sleep at night, you’d think wrong.

Sadly, you’d think wrong.

At least she’s cute doing it.

First Christmas Fun, Part 42

2011-12-07T20:18:00.001-07:00

The Stockings

2011-12-06T20:39:00.001-07:00

This was my first Christmas stocking- my grandma made it for me the year I was born. My brother has a mini-stocking, too, and now they both hang at my parent’s house.

The year after, Grandma made me my real stocking. My brother and cousins all have theirs, too. It always made me feel special to have a stocking that was made JUST for me. Besides, that way Santa couldn’t get mine and my brother’s mixed up. That would, after all, be a catastrophe.

And now, as spouses have joined the family, the collection of stockings has grown. The first year we were married, Grandma gave Luke one, too. She cross stitched the front and my mom sewed it into a stocking.

Then came Piper’s…

And this year, at Thanksgiving, Adalynn got hers, too.

I think it’s so cool that Grandma spends the time to make these. And the awesomeness compounds when Mom has a hand in them, too. I think it’s sort of the reason I love the Christmas season so much- the traditions and the memories. I love having ornaments on my tree from my Great Grandparent’s 50th anniversary, stitched frames from my grandma, and things that my mom made to fill their tree over the years. I love my “hand-me-down” decorations- they make Christmas feel like Christmas!

Piper Helps

2011-12-05T22:20:00.001-07:00

Okay, so I’m a little behind, but, ya know…

Piper is REALLY getting into the “helping” business, and usually insists on helping cook dinner, she helps vacuum (I give her the wands that she gets to “vacuum” with), putting clothes in the washer and folding clothes, emptying the dishwasher, setting her place at the table, feeding the dogs… You get the picture. If she thinks it’ll make her big, she’s ~~insistent~~ ready to get her hands dirty. Or clean. Whichever.

Anyway, when it came to Thanksgiving, Piper was absolutely willing to help. She, of course, didn’t really have an idea about what was going on. Only that things were different, and busy, and BIG, and that meant she had a job to do. I started running out of ways to keep her occupied without being under someone else’s feet. This expands my job, too. And my creativity levels. Which is a dangerous combination when you’re sleep deprived. But, again, I digress.

Piper helped make some of the finger foods we took to Luke’s parents for Thanksgiving. We made this cheesecake/caramel/toffee apple dip (YUM, btw)- Piper’s job was to help pour each layer together. And taste-test the apples, of course. And she helped arrange crackers on the platter (again, taste-testing was required). But she had the MOST fun doing this (just please ignore the chaos that is our kitchen; apparently a day of cooking took its toll…):

We always dip pretzels in almond bark- I still love them, but they are TIME CONSUMING. So, when I saw this on Pinterest, I had to try them. Pretzels topped with Hershey’s Hugs, melted in the oven, and sandwiched with another pretzel. Not sure I like them quite as much, but the ease factor was well worth it! Even if it wasn’t as fast as it could have been had my two-year-old not been in the driver’s seat. But ya know. Piper diligently, and enthusiastically, took each Hug and found an empty pretzel to put it on.

And we only had a few candies, ahem, accidentally fall INTO Piper’s mouth. She’s an expert taste-tester, if you haven’t gathered…

But, no no, the helping didn’t end there. After Thanksgiving dinner, I was washing dishes and Luke was helping dry. Addy was being held by her aunt, and I think Piper felt a little lost. So she insisted on helping. We found a little stepstool and she helped dry dishes. And she actually did a good job! She rubbed everything she could to make them dry, was very gentle with everything, and followed directions. She had a blast helping; and as odd as it may sound, I was really proud of her for WANTING to help, and actually helping, to boot.

It’s so much fun having a little helper by my side. I’ll admit that occasionally I have to remind myself that, while it’d probably be easier/faster/cleaner to do some things without her, doing them WITH her is more important. And ultimately more fun. I like to think that I’m getting to create my very own mini-me. Watch out, Luke… Watch. Out.

Santa??? AT Nana’s???

2011-12-04T18:00:00.001-07:00

Guess who showed up at Nana’s house this week? Thank goodness we happened to be having dinner there that night <<wink, wink>> so we didn’t miss Santa’s visit!

And, obviously, Santa can’t ask the reindeer to fly TOO often before The Big Day, so he gets some help getting around from the local fire department.

And he rides in style, folks… In style.

Piper met Santa out on the porch and kindly invited him (and his firefighter helpers- not elves, because they’re busy at the North Pole) into Nana and Grandpa’s house.

She, surprisingly, sat on his lap and had a nice little conversation with the Man in Red.

About a minute into the conversation, though, Piper looked at us, pointed at Santa, and asked “Who’s this???”

Next it was Addy’s turn on Santa’s lap. She liked his beard, but thought she could help… um… groom him a little and take care of the unkempt hair on his face.

Santa did not appreciate the fashion tip and after a few fast swipes, Addy’s turn came to a close. After all, Santa needed to go visit some other kids around town, too.

I’m not sure, but I think that both girls verified their position on the “nice” list (although, if I had anything to say about it, sleep habits would be an aspect, a LARGE aspect, of that list, and a certain tiny munchkin would find herself a little sad on Christmas morning, but I digress…) and they’re anxiously awaiting his next visit to the house in a few weeks.

Thanks Santa (and the fire department!) for visiting our girls! We had a blast!

Mommy’s Littlest Elf

2011-11-29T19:32:00.000-07:00

Christmas Tree Uncertainty

2011-11-29T15:33:00.000-07:00

A little concerned about the big box in the living room

She really wanted IN the box, but it didn’t make her feel much better about it all…

And after some soul-searching, she did finally get brave enough to touch it.

She got so comfortable touching it that she wouldn’t get out of the way so that we could finish putting it up. Back in the box they both went… (But, for the record, Piper did ask first so it wasn’t for the sole purpose of toddler wrangling…)

As unsure as Piper was, Addy had her beat. She was p-r-e-t-t-y nervous. I’m not sure she even blinked. It was darn funny…

Once she got a chance to explore, she was okay with the tree in her house. Not so sure about why there’s a tree in her house, but okay with it anyway.

The next morning, I was changing Addy’s diaper on the floor while Piper sat at the table eating breakfast. I couldn’t change Addy fast enough- she kept rolling over and crawling to the tree. So I said “Are you excited to see the tree this morning?” to which Piper replied “I ‘cited, too!”

I may have to keep the tree up long-term if it provokes sentences from my kid. We could have a Valentine’s tree, Easter tree, summer tree… Wonder if the hubby (and DOGS, haha) would approve…

A Swimming We Will Go!

2011-11-28T22:46:00.001-07:00

I always get jealous when I read people’s blogs about their swimming adventures with their kids. You know, oceans, lakes… Even pools when they’re in anticipation of those oceans and lakes…

But when you live in landlocked CO, swimming in the pool is pretty much as far as it goes. It’s as good as it gets. Which is fine, and lovely, but maybe it explains why, over Luke’s long weekend away from work, we decided to take the girls swimming at the rec center.

For the first time.

It took Piper a little bit of time to figure out how to walk in the water when it got up past her waist; she wasn’t so sure about it all, and stayed really extra close while she was figuring it out.

This pool has a lazy river, a tube slide, a regular big slide, and a teeny little slide for toddlers. It had a spray area with all kinds of sprayers and buckets that dropped water, too. Piper had a BALL. She even did the little slide all by herself (with us at the bottom because I was sure she’d go straight under…) She wasn’t always too sure of herself, but she actually pushed herself through it instead of clamming up like she usually would.

She even went with us down the B-I-G slide- and liked it! Well, she liked it once Dad figured out he needed to keep one hand on the wall of the slide to keep from tipping over in the curves (yeah, it was FAST). I mean, it was a BIG slide…

Addy was mostly along for the ride. She likes the water and didn’t mind bouncing in it at all. Just so long as she stayed wet and didn’t get chilly, she was happy as a lark. She wanted to eat half way through (as if that’s any big surprise) so we went to the locker room so that she could eat. I was certain that Piper would be ready to go when I got back. Much to my surprise, she was still going strong. She ended up wanting to stay for an hour and a half, and played HARD the whole time. I think she would have played more, really, but by that time, Addy was exhausted (and cold!) and we just needed to head home. And once I told her that lunch was waiting for her in the car, she was ready, too!

But best of all? They both took LONG naps when we got home.

SCORE!

When you’re a little sister…

2011-11-23T17:15:00.001-07:00

…you learn all kinds of things WAY before you’re supposed to.

Because you have a big sister who likes to teach you things.

About six weeks ago, during speech therapy, Addy (who was four months, mind you) was laying on the floor playing nicely. Piper got fed up with working and earned herself a break. She asked for a glass of water (a very common occurrence in our house) so I got a glass for her. She took a drink, laid the glass on the floor, and was off doing something else. Addy was reaching for the glass, so I let her have it, thinking she’d “explore” it a little and be done.

Nope. Not my kid. She promptly took the glass and took a couple swigs. Just like she’d done it a hundred times before.

Jennifer (the ST) and I cracked up and moved on.

About a week later, I caught Piper feeding Addy the cup. So that’s where she learned it. My two little twirps were conniving behind my back. And I had no. idea (probably earns me the Mom of the Year award, donchya think?)

Piper ALWAYS has a glass of water around the house. Often more than one if I can’t find it at the end of the day. I’ve always been thankful that she’s such a good water drinker.

Until now.

Because now I have a munchkin who goes on a hunt for the water cups so that she can help herself to a little somethin’ somethin’.

Case in point:

And yes, she sucked and swallowed. A lot.

I guess we’ll stop leaving handled cups around, huh?

Dental Drama

2011-11-22T21:54:00.001-07:00

Piper went to her FIRST dentist appointment last week. I was “supposed” to take her this summer (told her ped I would), but, frankly, I haven’t been in the mood. And since her 30-month check-up is coming soon, I figured I needed to get in before then.

The drama started when I was able to get an appointment with a dentist who does loads of work with the Ds population here in town. Problem is that he’s located on the other side of the world. As in, almost to Arizona (or at least it felt like it.) But, I figured that, since you don’t go to the dentist all that often, I was willing to travel for someone who came so highly recommended.

So, I called and got an appointment in less than a week. I was surprised it was so fast, but it gave me less time to worry about it (I’m so not a fan of dentists…), so I was game. The appointment was on Monday; Friday night, the receptionist called and said that she was unable to verify our dental insurance. And so that we didn’t get stuck with a huge bill, she suggested we reschedule until we could figure out why she couldn’t find us in the insurance system (despite having all the information AND a copy of my insurance card.) BUT, I did think it was a good idea to hold out until we got everything squared away. So, we cancelled our appointment and FINALLY got the insurance card figured out (she had Luke’s birthday wrong.) We rescheduled to last week.

So we travelled to The Other Side of the World and had our appointment. I dragged my mom with us so that she could sit with Adalynn (and we partook in a little retail therapy afterword- which cost me less than $3.) The appointment took all of 15 minutes, tops. The dentist and his hygenist, though, were super nice. They came out and sat with Piper on the floor and talked for a few minutes before they took her back. Piper was NOT in the mood to have her mouth looked at, but they were able to get everything done that they would have. Her teeth are healthy (wahoo!) but there is a little crowding on the top; hoping that, as she gets bigger, it won’t be an issue any more.

And, of course, we checked out and got the bill. After the whole insurance debacle from before, I didn’t figure it was going to be an issue; I KNOW that we get free checkups/cleanings twice a year. So when I got a bill for $57.50, I double-took. She said that insurance took it from $75 to that. So, essentially, it paid for 16%??? I still don’t understand. She said that if it was an error, we’d get a refund (uh, thanks).

For some reason, dental insurance is such a PAIN. It isn’t as spelled-out as medical insurance is, and it’s almost impossible, at least for us, to figure out if a provider is “in-network” or not. And I THOUGHT that was why the receptionist was insisting on verifying our coverage before seeing us- to make sure that we were covered there! To say that I’m a little peeved is a little of an understatement… So, I’m hoping that it’s a glitch. We’re waiting for the statement of benefits to look at it, and then call the insurance company to make sure that everything was billed correctly. But, looks like we may be in the market for a new dentist. JOY.

And since Piper was having NONE of the actual dentist office, the only pictures I got were of her playing in the waiting room. Let’s just say that it was a good thing she had time to play; after the hour-long drive down there, she was itchin’ to move!

Winnie the Pooh was playing; she’s never seen Pooh before, but DID like Tigger. Once Tigger had bounced off the screen, though, she wasn’t very interested, and did her very own bouncing… Off the walls…

She made her baby play dentist, too. It wasn’t nearly as funny, though, as the tantrum she threw when I told her that ADDY had to sit in the car seat, and not her baby doll. Oh, the drama!

Isn’t it time to go yet???

Thanksgiving, The First

2011-11-21T22:53:00.001-07:00

My side of the family traditionally has Thanksgiving dinner on the Sunday before the holiday. It works out well because Luke and I (and my brother and sister-in-law) don’t have to run between houses all day. We can all relax and enjoy our time together, and enjoy we do! Lots of laughter, lots of stories, and lots of food- all ingredients for a fun afternoon!

My grandma even brought blueberries for dinner- which Piper reminds me every single stinkin’ time we go to Costco that we’re out. Unfortunately, she eats SO many of them that I can’t afford the out-of-season fruit any longer. Needless to say, Piper was VERY excited. I’m pretty sure she almost exclusively ate blueberries and rolls for dinner. Whatever. That’s what holidays are for, right???

And while we were having pie, Piper talked Nana out of the whipped cream spoon. She thought she was totally getting away with something. And made a mess while she was at it! And since she was such a mess, we changed into Christmas pajamas for the ride home (“we” meaning the girls; Luke and I did not drive across town in matching pajamas, I assure you…) I figured that since it’s officially Christmas season after Thanksgiving, it was safe to break out the Christmas attire, yes???

And because Nana’s such a funny lady, she also gave the girls the idea to play “wagon” in her living room. Addy, surprisingly, had a ball. She liked it much more than sitting in the old-fashioned high chair- that she wasn’t so sure of…

The girls played SO hard yesterday that they were EXHAUSTED today. Piper got woken up after her THREE hour nap (which I, of course, paid for the rest of the day…)

Let the holidays begin!

Piper the Pianist

2011-11-17T21:14:00.001-07:00

One of the most fun parts of going to Nana and Grandpa’s house (besides the dogs, all-you-can-eat goodies, the toys, and, oh, yeah, Nana and Grandpa…) is the piano.

Almost every time we walk into their house, Piper asks to play (her sign is reminiscent of a concert pianist playing Flight of the Bumblebees). She’s enthralled with the ability to play high notes and low notes, playing a single key over and over to a very regular beat (better than I could, I think), playing keys right next to each other… There’s seldom any banging- it’s a lot more organized and planned than that.

It’s so much fun to watch her. Especially when she finishes with her song and looks to us as she awaits her much deserved (so she thinks) applause.

And also? She’s dang cute sitting on top of that big ol’ bench.

Preschool Previews

2011-11-16T21:23:00.001-07:00

Oh, lordy.

Today we had Piper’s transition IFSP review. That transition, of course, being the transition from the Early Intervention program to the school district for preschool.

PRESCHOOL. Can you please explain to me HOW we can be talking about preschool??? REALLY???

Our coordinator met us when Piper was still in the NICU. We always talk about how teeny she was back then and how different she is each time she sees her. This time, the BIG difference was how much more vocal Piper was- she’d never heard much noise come out of her (and believe you me, there is NOISE now!)

Today we talked about what we wanted to make for our last set of goals in EI. Everything, ultimately, boiled down to how we can make the preschool transition easier on Piper. Our new expectations are things like she’ll sit at the table and complete preschool activities {read: she won’t use her “charms” to get out of activities that she doesn’t particularly like} and use her verbal expressive vocabulary more frequently and with longer phrases.

I’ll admit that I’m a little apprehensive about sending her to school next year. I keep reminding myself that, because of where her birthday lands, she won’t be starting until next September. And that’s a long way away (don’t judge- the lie makes me feel better. So sue me…) I don’t know really what bothers me about it; her skills are age-appropriate, so I’m not so concerned about what services she’ll need and get- all I really care about is speech, and that shouldn’t be an issue. And she’s got such a great personality that I’m sure she’ll be accepted by her staff and peers (it was brought up today that she’s gonna love preschool!) and I can’t wait to see how she blossoms once she gets there.

I asked about our preschool itself. We can see it from my back window, which has obvious benefits. Apparently, our service coordinator knows of lots of families who are trying to choice-in to that school- it’s supposed to be REALLY good (WAHOO!), so that makes me feel better. They’re opening another elementary school (which also has the preschool in it) just a couple miles away (really super close) which could be an option, too, but it’s not open until next fall, which means there’s nothing there to observe. So, I guess I’ll make a trip up the street one of these days and take a peek at the classroom and make sure I like the teacher well enough.

ChildFind is supposed to contact us in February or March to do a pre-assessment (to make sure she actually qualifies, apparently? I dunno- seems silly when my kid has Down syndrome, but whatever… I guess they also determine who, as far as therapists, need to be at the actual assessment) and then the assessment and IEP meeting are scheduled together a few weeks later. I like the idea of the assessment AND the IEP being done in the same sitting.

Everything sounds like it should be fairly straight forward and mostly easy. I guess one of my concerns is that I’m afraid Piper will pull her “shy” act and not, for lack of a better term, perform to what she’s capable of. Our therapists will write reports and submit them, too, which, I’m telling myself, will cover those holes, if need be.

My big “ugh” moment, though, is that preschool is FOUR DAYS A WEEK. And I’m not so sure what I think about four days a week. It’s three hours a day, which sounds okay, but FOUR DAYS? Honestly, I think it’s one of those harder-on-me-than-her kind of things, but yikes.

Preschool, huh? How can a person be so excited and so anxious, all at the same time???

All Addy

2011-11-13T20:02:00.001-07:00

This is the face Addy flashes when Piper does her “incoming” siren. Addy’s usually happy about it, but man, oh man, does her alert system go off! And, as evidenced by the numerous scratching casualties on her face, the alert system is probably appropriate, although not efficient.

She really wanted to see what the deal was with this puzzle Piper was playing with. She is quite good at getting the pieces off, but she couldn’t figure out WHY.

…so, when she got frustrated with WHAT to do with it, eating it was the obvious second choice…

Saturday Night Jollies

2011-11-12T20:51:00.001-07:00

I’m a little disappointed

2011-11-11T21:58:00.001-07:00

There are things that have happened to Piper, either health issues, developmental issues, or physical issues, that I have always blamed on Down syndrome. And I’ve wondered what she would be like had that extra 21st chromosome NOT have affected that particular piece. Like, if she hadn’t have had duodenal atresia, would it have been easier for her to learn to eat in the beginning? Or if she didn’t have Ds, would the airway issues we had last year NOT have been an issue?

I’ve always KNOWN that Piper’s follicle impairment was obviously due to the fact that thin hair is common in individuals with Down syndrome.

Enter Addy Jayne.

To my horror, I’m afraid I must admit that she has LESS hair than her big sister.

Piper
October, 2009
5 months (7 1/2 pounds, just for comparison)

Adalynn
October, 2011
5 months (12 1/2 pounds)

Hellooooo headbands.

Happy Birthday, Noah!

2011-11-10T22:21:00.001-07:00

Piper got invited to a friend’s birthday party last weekend. He’s an older man; I keep telling her that I’m not sure I approve of a crush on someone twice her age, but I digress.

It was super hero themed; since our house is, surprise surprise, super hero-less in the toy/costume department, the girls went with “twin tornado” as their super power in matching outfits (stretching it, I know, but gimme a break- what do you expect with a house full of girls???)

Piper’s favorite part was decorating cookies. Noah’s parents loaded the kids up with food, then sugar cookies (with frosting, candies, and sprinkles, of course) BEFORE they even had cake. Surprisingly, a group slumber part was NOT on the invite.

Piper testing it before she decorated it. And Addy wonder what she did to draw the short end of the stick and NOT get a cookie of her own… She is SO ready for real food, but that’s another story.

At the Halloween party we went to at the high school, they decorated cookies, too, but she threw a FIT when she got frosting on her cookie. I wasn’t so sure how this was going to turn out, but she didn’t care at all this time. Whatever.

I haven’t been able to convince Piper that food isn’t just a vehicle for the condiment. She’s not really into “dipping” her food- she’ll dip it, and then suck off whatever she dipped it IN. It’s really quite disgusting. So, in this case, it was more fun to lick off the frosting than eat the cookie WITH the frosting. sigh…

mmmmm

After they decorated cookies (with frosting, candy, and sprinkles), they had cake. And ice cream. And THEN they had a pinata. Pretty sure you could have eaten your weight in calories that day.

Anyway, Piper was right up there with all the kids trying to catch the candy. Luke was trying to prevent her from taking ALL of it; sweet little Noah kept giving his to her because she asked (okay, so it was a little cute.) Pretty sure she now thinks that candy should occasionally, randomly, fall from the sky. But I fall victim to that same delusion, so I can’t fault her there…

Happy 5th Birthday, Noah! Thanks for having us!

Can you explain to me…

2011-11-09T19:44:00.001-07:00

We’ve discussed before the level of my husband’s geekiness, right? He’s a software engineer by day and Maker under the cover of darkness (and if you have to ask what “maker” is, run, hide, and don’t tell your husbands. It’s a dangerously time consuming and otherwise costly hobby, I tell ya…)

Anyway, as part of our “geek-ified” house, he built a computer that does all of our DVR-ing and houses all of our movies (so we can just click to watch a movie instead of having to put in the DVD- I admit, I like it.) Because it’s a full-blown computer, our remote is a keyboard.

It’s become a game for Piper to try and figure out how to a) find the keyboard and b) how many keys she has to push to find Sesame Street.

And, much to my chagrin, she’s darn good at finding Elmo. I have no idea how.

The innate Sweet Tooth

2011-11-07T21:39:00.001-07:00

Addy helped me cook the other night. Chopping veggies was not what she was interested in, however.

Note to self: when an infant is already displaying signs of the “ornery grin,” prepare for… umm, I dunno what, but something, I’m sure.

What? I’ve got the milk- why not cookies to go with it???
(For the record- YES, she did get them by herself. NO, she didn’t eat any. YES, I did let her play with them. Hey, they were keeping her occupied; what was it hurting, right?)

So when I heard the big crash, I jumped, only to find… well… this mess:

Halloween candy. Everywhere. Everywhere. Apparently the bling-y, shiny wrappers were just more than her little fingers could ignore.

Who… Wha? ME? It wasn’t me, Mom, I promise. They jumped. All by themselves!

SUCCESS! Sweet, sweet success!
<<enter evil laugh here>>

Promised Pictures

2011-11-04T18:45:00.001-06:00

The pro pictures from the Light the Night celebration at church

Like this one…

This isn’t fantastic of either girl- but I think it’s hilarious because Addy’s about .24 seconds away from screaming. A true look of horror, that one…

Swingin’

2011-11-03T21:58:00.001-06:00

Look who’s swinging on the big kid swing?

NOT so sure…

…maybe?

Wahoo!

FUN!

And as for Adalynn? She’s was impressed- can’t you tell?

Addy’s little… mishap

2011-11-01T17:19:00.000-06:00

Remember these pictures? Well, this is what she looked like the day before:

Yyyyeah… The little twirp decided to take a ~~nose~~ cheek dive on the carpet. Turns out, holding your chest up off the floor is an integral first step to crawling. Rear propulsion, face, and carpet are a bad combination. Go figure.

Day two, the red spot lessened, but she had a big raspberry in it’s place. Problem was that tears STUNG like the dickens; every time she cried, it’d touch that and she’d just start crying harder.

My sentiments exactly, Addy Jayne. My sentiments exactly.

And then it scabbed. The whole darn thing. It’s like her face was tattling on me- I wanted her to wear a sign that said “I did this to myself”.

Thankfully, the day after this Luke and I left for the mountains. By the time we got back, it was mostly gone. At least not noticable in the “I wonder what that woman DID to that poor child” kind of way.

I really hope that Addy doesn’t make up for all the bumps and bruises that Piper DIDN’T get. ‘Cause it could be a looooong, painful road to mobility for this munchkin.

Request #2

2011-10-31T21:29:00.001-06:00

You may be asking yourself WHY we feel the need to post every day for a month about Down syndrome. It may seem a little over-kill or over-the-top.

It’s not just because I’m bragging about my kid (although, I will admit, it’s a good byproduct.)

It’s because we want people to realize that our kids, and all individuals with disabilities, are just like you and your kids. They have likes, dislikes, hopes, and dreams. They have things they want to be when they grow up; they’re smart, capable, and lead purposeful, well intended, and meaningful lives.

You see, Piper’s unique.

Piper’s in the 10%.

Piper was diagnosed with Down syndrome prenatally.

And she wasn’t aborted.

Did you know that 90% (or more) of babies that are prenatally diagnosed are terminated?

Right here, in the US.

Why? Lack of information. Fear. Negative stereotypes. And because people think “that’s what we do.”

Down syndrome is the most commonly occurring congenital anomaly. Chances are, you will know (or already DO know) someone who has been touched by Down syndrome. And I hope, I really hope, that because you know Piper, you can tell them that it’ll be okay.

Because life IS okay.

It’s better than okay.

Piper is everything we didn’t know we needed. She’s our sunshine, our little munchkin, and our pride and joy. She’s taught us more than we have her, she’s shown us the family we were supposed to be, and she’s proven to us what’s really important.

We are so, so lucky that we were chosen to be her parents. I had no idea how much we needed her.

We needed her.

happy Halloween BOO!

2011-10-31T21:27:00.001-06:00

We took the girls to the Light Night carnival at our church tonight. And it was a BLAST! There were TONS of games and TONS of people. We took the wagon, in which the Bumbo fits surprisingly well, so both girls got to ride and be “big”.

And with the wooden sides, it had a farm-y feel. They were mighty cute, if I do say so myself.

They even had a black light puppet show- Piper LOVED it. Addy was enthralled. And the lead puppet singer was in a wheelchair; love that our church is really working on building disabilities into their services.

They had a professional photographer there, and we should get pictures in a couple days so I’ll show you then. But, in the meantime…

…Happy Halloween! Hope you’re night wasn’t too scary!

Request #1 (of 2)

2011-10-30T20:04:00.001-06:00

Now that Down Syndrome Awareness month is coming to an end, there are two things I want EVERYONE who knows Piper (or someone else with disabilities) to know. They both break my heart a little (okay, a lot) and I don’t like to talk about it. But, because this is what the month is all about, here I am.

The first task I have for you is about the word “retarded.” And because I can’t say it better myself, I’ll take it from the Spread the Word to End the Word campaign…

“When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.”

The fact of the matter is that we, as a society, have ended the use of other derogatory terms that were used in negative ways against groups of people. But somehow, somehow, “retarded” remains as one of the last “acceptable” adjectives in our vocabulary. I’m sure you’ve seen just how easily it rolls of the tongue of someone else. Frankly, it’s hate speech.

We protect people against racial slurs. It’s not acceptable to refer to others in jest based on their socio-economic standing. Lawsuits have been filed because of negative jokes referring to a woman.

But, apparently, when it comes to cognitive abilities, it’s still fair game.

And it sucks.

Not only does it propagate negative stereotypes about people with disabilities, but it takes away a piece of their person.

So, please don’t use the word. Governments, school districts, and private organizations have all pledged to not use the word (even in appropriate ways); we shouldn’t ever hear it, particularly in the “lame, stupid, annoying” sense.

Because when you say it in a negative manner, you’re referring to her:

…and she’s anything but lame, stupid, or annoying.

PEP Conference

2011-10-29T22:03:00.001-06:00

Well, we’re HOME. We left on Thursday afternoon to drop the girls off at my parents house (and all the junk that two girls require for a two-and-a-half-day-stay… good grief…) and head up to Vail for the PEP Conference. Yes, you read that right- without the kids. It was a first for Addy. Yikes.

The timing was pretty perfect, though- we had a pretty decent snow storm on Wednesday. So by Thursday, the highway up was mostly clear, but it was GORGEOUS!

Views from our hotel room- not too shabby, eh?

On the walk to the car ~~and the bar where we had dinner and a rather educational experience with a bunch of drunk Halloweeners…~~

And, oh my word, did we have FUN!

The PEP (Parents Encouraging Parents) conference has been happening in Colorado for about 30 years now. And, funny thing- my parents went for me when I was a baby.

What is it you ask? It’s a three day conference to connect parents of kids with disabilities with each other AND to the school systems. It’s for the whole state, and it’s free. Yes, FREE. Two nights in a NICE hotel and all your meals (except one) are paid for. It’s put on through the Department of Education and includes educational professionals, law professionals, and leaders in the community that have knowledge in Medicaid, insurance, and outreach sponsors.

And it was AWESOME. There were about 120 people from all over the state, with all different ages of kids and different disabilities. We took classes on transitional IEPs into preschool, how to navigate the private insurance world, Luke went to a Dad’s only group, a talk put on by a lawyer who’s won all kinds of awards for his help in the disability world… We had small groups that we go to know really well, met people who live near us, and others who have kids like ours. I met several professionals in our area (teachers, Special Education Directors, and therapists), and I think I found some new opportunities for both Piper and me.

There are a few things we had discussed that I thought were really neat and I’ll share them when I have a few more minutes. But it’s late. And Addy’s overly clingy (she keeps grabbing my face with both hands and kissing- over and over and over) so I’m nearly certain it’s going to be a long night.

But gosh darn- it was SO worth it!

I am so excited about so many things tonight!

Really, if you live in Colorado- you HAVE to go. I promise, you’ll love it. There’ll be two more conferences before the end of the year- you can learn more here. If you’re interested in going, register soon; spots usually fill up quickly.

Big major, huge, ginormous thanks to my parents for taking the girls for the weekend- even IF Addy didn’t sleep… Love you!

Just 'Cause

2011-10-27T22:25:00.001-06:00

So Luke and I are in Vail- without the kids- for a conference about IEPs and such, sooo... No great post tonight. Except to say that, well, I may actually get to sleep tonight.

...and to say "good luck" to my folks who have my non-sleeping child until Saturday. We need to enjoy these two nights because, after this, we may not get to again soon... (just kidding. I hope.)

Love Break

2011-10-26T19:27:00.001-06:00

So I was working today trying to make up for the past month of being locked out of the state’s system and being unable to work, when I suddenly had two munchkins sharing my lap space. I had just finished nursing Addy and Piper decided she needed to join in the fun, too. So the big one crawled over the top of me and landed herself on my lap, too.

Good gyad golly do I love these two… Perfect way to spend a break!

Addy looks terrified here, but I assure you…

…but she wasn’t.

Piper even shared her pretend snack with Addy.

…and that sore on Addy’s cheek? That’s a story for another day…

Talking Tot

2011-10-25T21:18:00.001-06:00

Just found out today that our insurance is going to cover speech therapy next year. WaHOO! It doesn’t this year, at least I don’t think it did (maybe it was last year?) when I looked, so I was starting to get a little nervous now that we’re looking at aging out of EI. There isn’t even a maximum number of visits that they’ll cover! Praise God for group health insurance!!! I think that speech is definitely the place Piper’s going to need some extra help, at least for a while, and I’m going to go out on a limb and assume that the speech provided in preschool isn’t going to be enough for her.

Anyway, Piper’s had a few very funny VOCAL sentences lately. She’s been talking in paragraphs a lot- adding words to her signs or adding signs to her words, depending on her mood. It’s SO STINKING AWESOME how much she’s started talking lately! I can’t even begin to describe the level of excitement when something new pops out of those little lips.

So, just for fun, the vocal stylings of my two year old:

I be back (apparently we have a Schwarzenegger prodigy- lovely…)
Ow-sie (outside)
I so pretty!
I’m so big!
Piper: Where’s Addy? (me: She’s already IN her car seat- see?) Piper: She’s being quiet- she sleeping? (me: No, she’s not sleeping- she’s just being good.) Piper: …laughing hysterically… <<Does this tell you how often Addy’s actually GOOD in the car???>>
Tall Nana? (“call” Nana)
Little xyz (little any-noun-she-feels-like)
Biiiiii xyz (big any-noun-she-feels-like)
Wid xyz (with any-noun-she-feels-like)
Wassa (What’s that?)
Das a (that’s a…)
Dis uh (this one)
Osh osh osh (wash wash wash)
Mom (yup, I’m MOM, not mama, or mommy- Mom. It’s really quite cute)
Mean mom
I mad
Bat (bath)
Nana’s biii daw… (Nana’s big dog)
booburies Psss? (“Blueberries PLEASE???” She’s very upset that blueberry season is over and she doesn’t quite catch the concept of WAY TOO EXPENSIVE…)

Things I never expected…

2011-10-24T21:06:00.001-06:00

…from my two-and-a-half year old…

Before Piper was born, I read and read and read all the information that’s out there about Down syndrome. Lots of it was scary, some of it was useful, and the rest of it I read, dismissed, and thought I gleaned what I needed.

Most of what “stuck” has been a non-issue and caused me to worry about stuff that I really didn’t need to.

There are, however, significant pieces of information that I really should have listened to a little better.

Like the fact that kids with Ds are small. I figured that I was small (like, really really- 40 pounds in third grade?), so Piper would, undoubtedly, be small, too. “Small” I’ve learned, though, is a relative term; it didn’t really sink in how small we were talking.

So, I pulled out some 12-18 month pants yesterday in an attempt to expand the kid’s fall wardrobe and I was reminded, once again, what small really looks like. It’s a sad day in paradise when you’re 30-month old child can’t keep up “baby” pants. But I digress.

Another thing I never expected from my two-and-a-half year old?

Her being able to use the bathroom sink as a drinking fountain. What you don’t see here, though, is her sitting IN the sink in an attempt to bath herself in the miniscule vessel. Have I mentioned the kid loves herself a bath???

And also? Thanks, Nana- thanks a whole lot for teaching her to drink from the drinking fountain. It’s been a valuable life skill. Or something.

Oh, the Irony

2011-10-23T20:12:00.001-06:00

The background: Piper came home from the hospital when she was seven weeks old. She weighed just over five pounds at the time, and was consuming a crazy number of calories each day. Because of her over-active metabolism, she was required to eat around the clock. She woke up on her own every few hours to eat overnight, but as she got a little older, she wanted to sleep for longer periods at night (go figure…) So, for about two months, I was “required”, per the doctors, to keep waking her up. I eventually figured out that she was MY kid, and I knew that, by waking her up at night, she wasn’t wanting to work as hard during the day AND she was eating less during the day, sooo… I stopped.

Fast-forward to NOW: I have a child who COULD sleep through the night and is nowhere. even. CLOSE. As in I’m wondering if by the time Luke retires, maybe I could possibly get a few minutes of sleep. And I’m starting to wonder at what point you just stop moving from exhaustion. Because it’d be good to know to make sure I’m not driving…

It’s a darn good thing she’s cute. Even at 2am. And 5am. And 11pm…

But have no fear- it doesn’t slow her down during the day. No, siree- this child- this one right here?

She decided to get up on hands and knees today. By herself. All 12 pounds of her. In pursuit of the most favorite-est toy (the half-full bag of baby wipes…) Holy smokes, I’m not ready for this…

Halloween- The Practice Run

2011-10-22T21:14:00.001-06:00

There’s a high school here in town that hosts a Halloween party and an Easter party each year for our Ds association. It’s, unfortunately, on the other side of the world from here, so we headed down nice and early this morning. Luke wanted to go to an open house for his favorite geek store on the other side of town instead, and because our littlest twirp has been known to be a very unpleasant travel companion in the car from time to time, I wrangled my poor mom into going with us to help.

Piper’s obsessed with cows at the moment; like, seriously really obsessed. So when I found a cow costume, I knew it was meant to be. She did need a bow, though, to make sure that she was recognized as a GIRL cow. She also wanted to take her baby cow with her, sooooo…

…and yes, she pulled it (almost) the whole time. Funny? Uh, yes.

When we walked into the school, Piper was in heaven. Not because of the costumes, or the people, or the goodies. No, it was because she could run. And run. And RUN.

And once she started, she. didn’t. stop.

Lemme tell you, Mom and I are EXHAUSTED tonight.

But, anyway, the party this morning was a lot of fun. There were probably 20 classrooms with a few high schoolers in each that were “running” themed games for that room. And they had LOTS of candy.

She got to play horsie:

…and kick balloons:

…and talk to Burt (which she, by the way, totally figured out that there was a person inside- she was trying to reach through the eye holes to the poor girl inside…):

Piper was, eventually, so exhausted she couldn’t breath, so we left and headed to lunch. After refueling at Chipotle, we went to a few stores not too far, including having ice cream at Costco.

But was it time to go home? Nope.

Next on the docket was Halloween Party #2. This time, though, Addy got to dress up, too.

And I think she’s probably the cutest ducky I’ve ever, ever seen.

I think the day properly prepared Piper for real Halloween next week. Practice makes perfect, after all.

A Day in the Life

2011-10-21T20:32:00.001-06:00

We met friends at the shopping center this morning to play. Piper decided to get brave and run on the raised garden beds. With her baby. And then proceeded to make her baby crawl on the flagstone. She’s a slave driver, that one. Addy was, therefore, relieved that she got to enjoy the sunshine from the comfort and safety of her car seat.

I have to admit- I laughed out loud at this one…

This picture cracks me up because she was telling the guy walking by- the complete stranger walking by- to please be quiet because her sister was asleep in the stroller. Bossy? Umm, yeah.

Eye Problems and Ophthalmology Appointment

2011-10-20T20:15:00.001-06:00

A few days ago, the girls and I were walking around the store and Piper spotted a balloon. On the ceiling. On the ceiling of a big-box store. And THEN she noticed that the balloon had dogs on it. The child can spot a dog from a mile away, I swear.

Kids with Ds have a higher incidence of eye problems than the typical population. They are the same types of troubles that all kids have, they’re just more frequent. The estimates vary, but I’ve seen numbers as high as 70% of individuals will need glasses for refractive error (where the eyes just don’t see as well as they should.) Other, less common, issues are strabismus (which is when the eyes don’t align correctly), nystagmus (when the eyes shake as they’re trying to focus), amblyopia (“lazy eye”), and cataracts. Some of these are blamed on that low muscle tone that I’ve talked about before.

Because of the higher risk of having problems, kids with Ds see the ophthalmologist routinely instead of waiting for problems to manifest.

We first took Piper when she was nine months old; she was very borderline for needing glasses, and just barely made the cutoff that our doctor considers glasses. Her doctor said that her eyes weren’t quite bad enough to make her want to keep the glasses on, so we’d wait a few months and see what things looked like then. We went back in October last year, and her eyes got remarkably better. Like, way better than anyone had anticipated. Not normal, but good enough for a one-year-old to not worry about glasses just yet. The doctor theorized that, because she was a preemie, her eyes were needing just a little more time to “shape up” than they should have.

Yesterday was our next follow-up. I can’t say that I really look forward to these appointments because it requires them to dilate her eyes (which she HATES). It’s not the dilation part itself, it’s the time it takes to get in-and-out of there that kind of stinks. We didn’t do too bad yesterday- just under two hours…

Anyway, we went in and sat with a nurse first who took a peek at her history and made sure that nothing had really changed. They dilated her little eyeballs, she cried, we walked around the hospital, and then came back and watched a movie in the waiting room (on a side note- have you ever noticed that the level of difficulty to entertain your child is inversely proportional to the need of you being there???) Anyway, they finally came and took us back and the tech looked at her, sent in the fellow (who’s really nice and supposed to start next year full-time; they’re going from two doctors to FOUR, for anyone who’s fed up with the wait to get into the clinic…), and then the doctor came in.

Holy smokes- the kid’s eyes are NORMAL. She had a +1.0 on both sides, which isn’t enough for glasses on a toddler. He said that she’s the picture for why he waits to put glasses on kids if they don’t REALLY need them. Hot dog!

It’s not to say that she won’t end up with glasses at some point. He said that now his biggest concern is to make sure that she can see really well when she goes to school. So, we’ll keep plugging along and keep going back every year, just to be sure.

And now that Piper’s in bed, a day and a half after her appointment, her eyes are finally starting to not be dilated. They say the lighter the eye, the easier they dilate and the longer they’ll remain, but good grief. And because she was dilated, the few pictures I was able to take from my phone all made her look like a creepy bunny a la Monty Python or something. So I’ll just leave you with this one because it’s cute and I haven’t posted it yet. She’s panting because she was HIKING, but more on that later…

NDSC 2012

2011-10-19T19:58:00.001-06:00

Next year’s Down Syndrome Congress is in Washington, DC- how fun is that???

It’s also the 40th anniversary of the conference, so it promises to be a big one.

Piper and I will be there, and we think we’re bringing Daddy, too. I’d love to know who else is planning on going! I think it’d be a kick in the pants to have a bunch of the bloggers there!

Are YOU going???

A Favorite piper-ism

2011-10-18T20:49:00.001-06:00

Piper’s an overly cautious child. As a result, she gets very few bumps and bruises. As in, I can count the number of skinned knees on one hand. And have fingers left over.

So man, oh man, when she does get an owie, we know about it. And long after that owie has healed, she still points it out to us to make sure we haven’t forgotten.

I haven’t decided for sure if her preoccupation with the healed owie site is because she’s flabbergasted by her body’s ability to heal itself or if she hopes that it’ll reappear so that she can get some more sympathy from it.

The funniest thing, though, is when she tries to kiss her skinned knee. That takes talent, my friends, real, true talent.

Piper- where’s your owie?

It still hurts her feelings- can’t you tell?

Now it’s to the point that, if you ask, she’ll go looking all over her legs for something to point out to you. Good thing the kid doesn’t have freckles like I do; she’d think they were all worth a few sympathy points…

Effects on Siblings

2011-10-17T22:17:00.001-06:00

When Piper was first diagnosed, I was sad. I was confused. And, frankly, I was mad. Mad that, I thought, it meant we weren’t going to be “able” to have more kids. I didn’t think that we’d take “the risk” of having another child with Down syndrome.

As time wore on, we (obviously) figured out that it was hogwash. I remember the night that little light switched in my brain; we were picking out furniture for Piper’s nursery and decided that we should spend a little more and get something nice so that it would last for the other kids. Of course we could have more kids; having Piper first in no way precluded us from expanding our family. Why should it? And if, by some luck of the draw, we did have another child with Ds, we were okay with that.

There are some on the outside who insist that “making” a sibling “cope” with their brother or sister who has Ds is a negative thing. That they will grow to resent them. That it takes too much of the parents’ time away from the “well” sibling.

There’s a wonderful doctor in Boston who specializes in Down syndrome. Dr. Skotko is one of the leading individuals who fight for appropriate representation of individuals with Down syndrome. His work is focused on forming the best medical practices for our kids and helping medical professionals understand more completely what the diagnosis means. He understands the ins-and-outs the way that few people do. But what makes Dr. Skotko so unique? His sister has Ds.

He and some colleagues have recently completed a series of studies that focus on family perceptions of Down syndrome and their feelings toward a family member with Ds. The first was the parents’ perspective, the second was the sibling perspective, and the third was from the perspective of individuals with Ds.

The sibling study was aimed at kids 9-12 years old and 12 years and older. They asked both “on a scale of one to x, how would you rate…” and open-ended questions. In both age groups, the “approval rating” across the board was, well, high. Quoting from the article itself (which is worth the read, if you haven’t):

The vast majority of brothers and sisters love their siblings with DS and are proud of them.
The vast majority of brothers and sisters feel that their relationship with their sibling with DS is a good one.
The vast majority of brothers and sisters would not trade their sibling with DS for another sibling who did not have DS.
A minority of brothers and sisters feel sorry for their sibling with DS and are embarrassed when among friends or in the public.
The majority of brothers and sisters are comfortable assuming increased responsibilities, and a vast majority plan to remain involved in their sibling's life as they both age.
In general, the vast majority of brothers and sisters feel that they are better people because of their sibling with DS.

It should be noted that “vast majority” was 90%+ for almost all areas. We’re talking vast majority here, folks. The typical siblings often have very tight bonds with their brother or sister with Ds (there are some really great blogs that center around that dynamic; this is one of my favs.) Some other studies have shown that, when there’s an individual with Ds in the family, the other siblings are often more compassionate, caring, and have a broader world view. And isn’t that stuff that we all want our kids to be?

And as for our girls? We, obviously, have no idea what the future holds. I don’t know what Adalynn will think of Piper in 5, 10, or 20 years. We hope, though, that they’ll be more in the norm than not. For now, Addy offers Piper nothing but looks of adoration. Piper does the same for Addy, and is already showing signs of being her protector. Piper tells me to be quiet if Addy’s sleeping, to feed her if she’s crying, and always makes sure I remember to get her out of bed in the morning (like that’s ever happened… I’ve decided to tell myself that she’s just eager to see her sister, and not that she’s questioning my parenting skills…)

We’ll do everything in our power to make sure that both girls are loved the way they need to be loved. That they are pushed to the extent they need to be, and have expectations that are appropriate for them. That they both get to do things they want to, but that they also understand what it is to be in a family, and that sometimes that means sacrificing for someone else.

It’s no different than how we were raised. It’s no different than I ever expected to raise our kids- diagnoses or not.

Teaching love and acceptance- isn’t that what parenting is all about?

A Day in the Life

2011-10-16T20:43:00.001-06:00

Yesterday we got to go to a wedding for one of Luke’s friends. It was up in Boulder, so we spent the day messing around up on that part of town. We even met up with my roommate from college- it was really a fun day!

The wedding was on a farm on the outskirts of town. The weather was perfect. Piper got to run to her little heart’s content (which was good after a day of being in the car, eating lunch, shopping, going back in the car…)

The leaves are just starting to change here- with the sun starting to peek over mountains at sunset, it really made the trees glow. Piper was only moderately cooperative, which kind of bums me out, because it was so pretty. She was much less enthused about posing for a picture than she was trying to figure out how to get into the little pond. Or, as she called it, “the bath.”

You can sense her enthusiasm, can’t you? I think she may be saying “get that gosh darn camera out of my face and let me have a bath.”

But the absolutely best part of all (other than, you know, the wedding)? They had chickens. Bunches and bunches and bunches of chickens. And a half dozen turkeys. And a pygmy goat, who I’m convinced was possessed.

We walked over to the chicken coupe once and then went to explore some more; Piper kept finding her way back to the chickens. At least she wasn’t trying to take a dip anymore…

I love this picture because she’s saying “bawk bawk bawk”- you know, like a chicken talks. (So, evidently, I’m really bad at typing in onomatopoeia…)

And then the little goat finally came out to see us. We had to convince Piper that it was not a cow. I think she only partially believed me.

See? I told you he looked possessed…

We all sat on hay bales in the middle of the field for the ceremony. It was completely not traditional, and one of the sweetest ceremonies I’ve seen. The girls even behaved themselves (okay, so I bought Piper off with a fruit snack- teeny piece by teeny piece.) We sat at a table and could watch them finish up with photographs. And while Piper ran around some more……I got to nurse Addy with this in the backdrop:

Such a sweet night! Congratulations, Jon and Sarah!

Happiness is…

2011-10-15T20:56:00.001-06:00

Celebrating the small things, like learning to blow bubbles.

Solo.

Worries, fears, and hesitations (oh my!)

2011-10-14T18:08:00.001-06:00

There is an underlying fear that’s involved when you find out your child is “different.”

You worry about the potential medical problems. You fuss over making sure you do everything “correctly.” You read, and read, and read.

I know that I always worried, in the beginning, that we were doing “enough,” or making sure that we weren’t missing something. Looking back, I think we (okay, I- I’m the resident worrier in the family…) did a lot more worrying than the situation warranted. I learned about more topics, in more depth, than I’ll ever need.

But of everything that took up my brain power in those early days, the biggest waste of time was worrying about Piper as an adult. That’s right- she weighed a whopping five ounces when she was diagnosed, and I was worried about what life would be like in 30 or 40 years. I’m sure I’m not the only one that jumped a few decades at that initial diagnosis. I think it’s our brain’s way of trying to take something in that you have no idea how to even begin to comprehend. The details are too overwhelming, so we try to generalize, which just leads to thinking about the “end result” instead of what happens up until then.

And while, logically, I know why it happens, it seems so bizarre that we, as humans, who are smart enough to know better, are labeling, assuming, and determining the potential for someone long before we even know who they are, what they’ll like, or what they’re capable of.

Parents of typical kids look to the future and hope that they’re kids will be “good.” Maybe that they’ll be smart, a computer nerd (ahem- Luke, lol), a football player… But there’s no real stress behind it. Sure, when I look at Addy, I like to think that she’ll like the same things as Luke and I (math, science, and computers- surely it’s in the genes, right???), and sure, I like to think that she’ll go to college, get married, and have babies. But I have never once wondered if she’ll grow up in special education, if she’ll live with us as an adult, or if she’ll be accepted by her peers.

Someone asked me what my biggest fear is for Piper’s future. If you had asked me two years ago, it would have been all that. Ultimately, really, I think it would have been the fear of the unknown. Wondering what we were going to be facing, wondering “how severely” she’d be affected. Wondering what “our” (meaning Luke and my) life would turn out to be like.

But now? Now none of that is a fear. I’ve learned that Piper’s going to have talents. She’s going to have things that she likes to do. And I’ve learned that Piper is smart, and that her diagnosis does not define what she’s capable of accomplishing. And just like a typical kid, we have no idea what she’ll want to do when she’s older. And, boy, is that awesome!

I used to have fears. Now I have hopes. I hope that she’ll be “good.” Maybe that she’ll be smart, a computer nerd, or athletic. I hope that she likes the same things Luke and I do. I like to think that she’ll go to college, get married, and have babies.

Because, really, what’s preventing all that from happening?

A Day in the Life

2011-10-13T20:34:00.001-06:00

Have you ever had one of those days where you’re positive that that one ounce of mental acuity that’s hanging on for dear life is just about to evaporate? Yeah, that was my day.

Piper’s teething. Addy’s back to not sleeping, which means that Piper doesn’t sleep great because their rooms share a wall. Which, obviously, means that we don’t sleep, either.

So, by 3:00 this afternoon, I was ready for Luke to be home from work. Which was another two-and-a-half hours away (at least!) With that realization, I decided to take the girls for a walk to the park. The wind finally died down, and it was relatively nice outside… It felt so good to get in the sunshine!

I made Piper sit on the picnic table to re-strap her shoes. I thought it made for a cute picture, but all she’d do is sign “help” to get down. Turkey.

She RAN to the playground part and played and played and played. I think being outside felt good to her, too.

She’s doing her best Michael Phelps impression here, I think. Although I nearly had a heart attack as I had visions of her blasting off with her feet and flying down the slide head-first. But that wasn’t nearly as bad as my near freak-out when I realized that there’s a reeeeally big drop there behind her bottom. On the other side of the playground from where I was standing. Yikes.

She’s willing to look straight down, head first, but has gotten into the habit of wanting to flip over, mid-slide, so that she can land on her feet at the bottom. Now she’s getting lazy and just starts on her tummy. Wouldn’t you think the plastic road-rash would burn???

The funniest part of the whole time, though, was when I was a little distracted with Adalynn- Piper was walking toward the center of the park, so I knew she was safe. I looked up, and found her INSIDE the cargo compartment of the stroller. Why? I have no. idea.

At 2 1/2, shouldn’t you have outgrown the basket???

The Blasted Absolute

2011-10-12T20:20:00.001-06:00

No one in their right mind would say that “all kids hate peas” right? Because all kids are different. No two kids like the same foods, play in the same ways, learn in the same styles. If everyone was the same, that instruction booklet for raising a kid would be possible.

But, for some reason, when you have a child with special needs, your kid is put into a box. A box that identifies them, limits what they’re able to do, how they learn, and what medical problems they’ll have.

That box is a generalization. And by definition, when that box is meant to define your child, it’s likely that your kid will fit those descriptors. But why do we expect them TO fit every one of those holes?

Of everything I hear or read, I hate anything that starts with “All individuals with Down syndrome…” The only thing that applies to EVERY individual with Down syndrome is that they have a triplication of the genetic material found on the 21st chromosome in some cells. Some individuals with Ds don’t even have 47 chromosomes!

I read something online today that was referencing “all of the health problems that ALL kids have”, “all of the feeding issues that ALL kids have”, and few other “all”-type statements (including one ON the NDSS website that said that ALL individuals with Ds have some form of cognitive delay! It’s simply not true!) And it drives me NUTS. Because there isn’t a single thing that Down syndrome guarantees. Period.

So, I guess what I’m really trying to say, for anyone on the “outside”, is please beware of anything that says “all”, “everyone”, “always”… you get the picture. Yes, they’re generalizations. And yes, they do apply to, say, a larger proportion of “our” kids than typical kids. But for every single one of those stereotypes, I’m sure I can point you toward many others who don’t fit it.

Having a kid is a guarantee of nothing. You can’t guarantee that your child will accomplish everything you want. And you can’t guarantee that your child WON’T achieve everything you think they CAN’T. Special needs or not.

…and I’m off my soapbox.

I’m cheating

2011-10-11T20:15:00.001-06:00

I’m pooped.

It’s been a long day with a teething, exhausted toddler and a moderately grumpy baby.

Our family is, after all, more a like than different- and I still get to have my days…

So, tonight, I’m pulling my wildcard and stealing a post.

So sue me.

My aunt and uncle are in town visiting from Australia- how cool is that?

Me and the girls went over to my grandma’s on Monday to see Lisa. Mom went with us and was able to get some pretty cute pictures of the girls.

I’m stealing them. Mom recently started a blog of her own to show off her very deserving quilts, and she put up the rest of the pictures there. Go check them out!

Piper the Therapist

2011-10-10T21:14:00.001-06:00

Piper has decided that it’s not really fair that she had so much therapy when she was a baby and Addy hasn’t gotten any. So, she’s taken on the role of lead therapist to ensure that she’s doing things correctly.

Of course, by “correctly,” I mean “Piper-style.”

Last night, as we were watching Addy in four-point stance…

…when Piper decided to take it a step further and make her crawl.

I can’t say I’m really into this idea, because I’m certain that I’m not ready for my (four-and-a-half-month-old) to be honest-to-goodness crawling.

Piper obviously canNOT wait to have a partner in crime.

Yikes.

A day in the life

2011-10-09T20:02:00.001-06:00

Man, oh man, do these girls love each other!

(Please pardon the Christmas pajamas. It actually got cold here this weekend, and these happened to be clean. Besides- Addy’s will undoubtedly not fit at Christmas time, so we might as well get some use out of them, right???)

What does Down syndrome look like?

2011-10-08T22:18:00.001-06:00

I think that most people can pick out an individual with Down syndrome- but what is it that makes their appearance so identifiable? Here’s a short list of some of the characteristics that individuals with Ds can exhibit. No one has all of them. What’s important to remember is that the number of characteristics that a person DOES have has no bearing on their level of cognitive, physical, or social ability (in other words, just because someone is “more obvious” doesn’t mean that they’re more severely delayed!)

Muscles: I think that one of the most noticeable, easily recognized, and first identified characteristics is low muscle tone. Low tone doesn’t mean that the muscles are weak- it happens when the brain doesn’t receive signals as well as it should (this is overly simplified, of course). Babies with Ds are described as being “floppy” babies. If a newborn is unusually floppy, doctors start looking for more markers. The low tone affects every muscle in the body- most people think of only large muscle groups, like arms and legs, but if you think about it, it affects tongues, intestinal tracks and eyes as well. It’s the muscle tone issue that, when not helped by physical therapy, cause that stereotypical gait when individuals walk.

Piper has been described as having normal, albeit low normal, muscle tone. Her tone is a little sporadic, though- her arms are more affected than her legs, for example.

Head: Heads of kids with Ds have a few commonalities. They tend to be slightly smaller and be characterized as brachycephalic (which means that the back is flat).

This is one place that Piper doesn’t really follow the norm. Her head circumference is the only thing that’s even remotely CLOSE to the typical growth chart (she’s actually ON it!) and she doesn’t have a brachycephalic back.

Nose: Kids with Ds have a flattened nasal bridge (and are sometimes even missing the nasal bone itself)- it gives them the appearance of having that cute little button nose. (Side note: this is one of those really “unfortunate” outcomes of Ds, donchya think? My black-side joke is that it took Ds to take away the giant shnozz that I gifted to our gene pool…)

Although not perfectly flat, Piper does have a cute little nose.

Mouth: Probably the most stereotypical Ds feature is a protruding tongue. It used to be thought that the tongue was larger than it should be. But now they know that the mouth cavity (along with sinuses) are smaller than they should be. The roof of the mouth is also higher and more narrow, giving the tongue less space to be. The tongue protrusion is also blamed on that low muscle tone.

We do see Piper’s tongue on occasion, but she’s usually really good at keeping it “in.” When she was teeny, she’d go through phases where we wouldn’t see it at all, and then phases when we’d see it a bit more often. Nowadays, we don’t so much see her tongue as we see an “open mouth posture” when she’s “at rest.”
We still sometimes see it when she’s smiling enthusiastically. Although I’m 95% certain that’s because she thinks it’s funny…

Neck: One of the “soft” markers they look for on ultrasound to screen for Down syndrome is a thick nuchal fold. The nuchal fold is just the fat pad and skin found at the back of the neck. It’s one of the standard measurements at the 20 week ultrasound that most pregnant women get. If you remember, we had a Nuchal Translucency Screening done with Addy a year ago- that test focuses on this measurement.

This is one of the things that used to be more noticeable than it is now; you can see it on this picture of Piper when she was about a month old and still in the NICU.

And this is one from this summer- you can see when she moves just right.

Eyes: Eyes are often almond-shaped and upward-slanted. And kids with Ds can have the most beautiful eyes because of something Brushfield spots. Brushfield spots are raised, white dots on the outside of the iris that reflect the light. The really cool thing about them is that they make the eyes sparkle- how cool is that? They also often have epicanthal folds. This is where there’s a wrinkle of skin that covers part of the inside corner of the eye. None of these features hurt or damage the eyesight.

Piper’s eyes do slant up a tad, but they’re not almond shaped. She also has epicanthal folds, but, alas, no Brushfield spots. Bummer.

Hands and Feet: Individuals with Ds often have small hands with short, almost stubby, little fingers. And the same goes for feet. Because of the low muscle tone, hands tend to be “splayed” in a starfish shape. They can also have little curved pinkie fingers. One of the most notable features, though, is a single palmar crease across the palm of the hand (most people have two lines across their palms that don’t intersect.) They also have a large gap between their first and second toes, called a sandal gap.

Piper definitely has short fingers and toes, and pretty dinky little hands. And she’s currently (almost) two and a half and wears a size 4 shoe with plenty of space. I can’t say much, though, because I also have short, stubby fingers and toes. And I wore a size 1 shoe on my first birthday and a size two on my second birthday… After she was born, I had no idea why they identified her “spade-shaped hands,” but now I know that it was a “well, she doesn’t have that” statement. She DOES have the palmar crease (and so does her uncle, at least on one hand!) but no sandal gap. This picture isn’t great, but you can see her palmar crease. She was sleeping before I thought about grabbing a picture… Poor kid was manhandled for this, lol.

Limbs: One of the markers that can be noted on ultrasound are short long bones in the arms and legs. A little bit of a side note: one reason, they say, that kids with Ds are late sitters is that, because their arms are shorter, it’s difficult, and not really helpful, to learn to tripod sit with the help of their arms. Piper NEVER used her arms to prop with.

Piper’s arms are, and always have been, shorter, comparatively, than her leg bones. In utero, her arms always measured about 2-3 weeks behind the rest of her. Her legs always measured 1-2 weeks behind the rest of her. Now that she’s big, I don’t really notice her legs being short. Her arms, however, are a bit more obvious.

Ears: Ears tend to be smaller, lower set, and can be “folded”. The canal itself is substantially smaller than similarly sized, typical peers. The small and lower-set ear canal is part of what makes ear infections more prominent in kiddos with Ds.

Piper’s ears are positioned and shaped correctly, but she definitely has small canals. And, oddly enough, one is smaller than the other. Bizarre???

Short stature: Kids with Ds have their own growth chart because their height tends to be very different than their typical peers. (Another funny fact: European boys with Ds are taller than their American counterparts, but girls are similar- how weird is that?) Last year, I was curious what the Ds chart looked like ON the typical chart- you can find that here.

This is, I think, Piper’s most obvious trait. The kid is a shrimp. She’s about 31 inches tall and weighs 20 1/2 pounds. She’s small even by Ds standards, holding up between the fifth and tenth percentiles (although height may be a little higher now.) This is a picture of Piper and her buddy who’s a week older than she is…

People with Ds have a bunch of characteristics that make them look like each other. These are a few of them. But they’re all individuals- and they all look like their families first! Sure, they may have 47 chromosomes, but they STILL get all 47 chromosomes from their parents!

Always happy, eh?

2011-10-07T22:39:00.001-06:00

You’ve probably heard the phrase “Aw, kids with Down syndrome are always SO happy!”

Believe me, I’ve heard it. Loads. Because Piper usually is in a good mood. She has a zeal for life- and I think that we could all take a little lesson from her in that department.

But always happy?

Ha- anyone who spends a little time with her knows that’s not the case. She wants her way, she doesn’t always want to be patient or cooperative, and she doesn’t always like having to follow the rules.

She is a toddler, after all…

Therapy, I mean, “Play dates”

2011-10-06T22:05:00.001-06:00

Do you know that any child, up to age three, who shows a delay in their development is eligible for therapy through the government?

Piper’s generation is at the forefront of a “new” law that guarantees them access to developmental therapies (physical therapy, occupational therapy, speech therapy, and developmental therapy, to name a few). The law (Part C of IDEA- Individuals with Disabilities Education Act), signed by President Bush in 2004, requires states to provide services to individuals if they have certain diagnoses (Down syndrome being one of those) or if they show significant enough delays in one or more areas. The theory, and power, behind Early Intervention is that, by the time these kids go to school, they require less help. It’s actually cheaper for the government to offer this help early on than it is to try and catch the kids up when they’re a little bigger. Brilliant, yes?

Piper is lucky to get lots of help to make sure that she’s developing alongside her typical peers. About a week-and-a-half after she came home from the hospital, we met with Becky, her new OT. She’s been coming to our home for an hour every week since then. Piper loves her, of course, and thinks that she’s coming for a play date each week. A big question I often got, when Piper weighed about 5 1/2 pounds, is what she could be working on in therapy.

In the beginning, we worked on some oral motor skills to help her eat better. Finishing her bottles was the big hurdle (alongside growing) that kept us in the NICU for seven weeks, and while she was able to eat when she went home, it was a work in progress. By the time she was about three months old, we had surpassed the bottle and moved on to nursing.

Occupational therapy is anything that’s needed for every day life- which means that, for an infant and toddler, pretty much anything. Our OT sessions have been a mix of oral motor, speech, fine motor, and physical therapy skills. We worked on crossing midline with her hands, bending (her prematurity gave her some muscle funkiness), sitting, crawling, feeding, pincer grasps, walking, spoon feeding, cup drinking…

Nowadays, we’re working on mostly fine motor activities to get her ready for preschool. She’s getting pretty good at stringing beads, she can complete five and six piece puzzles (when you have to rotate the pieces, it’s a big deal!), drawing shapes, walking up stairs without holding on to anything, tactile discrimination, and more, I’m sure.

We see the OT and speech therapists for an hour each week (you can read more about our speech adventure on yesterday’s post). They are our only “regular” visits.

We also sporadically meet with THE physical therapist at The Children’s Hospital here in Denver. These visits are not through Early Intervention, though. Pat Winders wrote the book, literally, on gross motor skills and kids with Down syndrome. And she is, quite possibly, the world’s sweetest lady. We always enjoy our visits with her, and we leave with a few more skills than when we came. We use Pat to make sure that Piper’s moving appropriately and that she’s using her muscles in the correct way. Because of the low muscle tone, our kids can develop movements that are easier, but can be harmful to their joints in the long run. One of the advantages of physical therapy is to prevent that damage before it happens.

Different states offer different services; some kids with Ds get considerably more than this, and some get less. The IDEA law has minimum requirements that the states must provide, but the specifics can vary considerably from state-to-state.

Starting on the therapy wagon is a difficult pill to swallow. It’s the first adventure highlighting that your kid is different. That they need more help. And, really, it stinks. That is until you start seeing the benefits, acknowledging the advances, and have someone who makes sure that YOU see all the wonderful things your child is accomplishing. Everyone is on the same team- they all want to make sure that your child is reaching the very highest potential they’re capable of. It’s really amazing to see all the little, tiny steps that go into something we usually take for granted. And when someone is there, alongside you, celebrating in each and every one of those little, tiny skills… Well, it’s a great feeling to see someone else proud of your kid, too, because darn do they have to work hard to get there!

Why do we sign?

2011-10-05T20:35:00.001-06:00

Piper has been slow to vocally speak. Kids with Down syndrome tend to have some degree of speech delay (but that doesn’t mean that they ALL will!) Add to that Piper’s airway was severely constricted until a year ago, and we have some catch-up to play.

Piper really began making “speech” type sounds late this past winter (March-ish, probably- it took more than six months for the cartilage in her trachea to fully heal), and she’s REALLY taken off since then. She seems to still be learning how to make her voice do what she wants it to, but as our speech therapist said, she’s only had a few months of practice. She’s really a lot like a six-month old, I think, in verbalizing.

It does NOT mean, though, that she has a language delay.

Piper’s receptive language (what she understands someone else saying) is completely age-appropriate. She understands everything, can follow complex, multi-step directions, and often surprises us when we don’t know she’s listening. And I’m pretty sure she can spell things like “lunch,” or “cookie,” or “bath.”

So how do you bridge that gap between what a kid understands and what they’re able to say?

I was always going to use sign language with my kids. I signed as a baby, and my parents have always touted the benefits. There are some theories about negative effects of signing (primarily that it will prevent or delay a child from speaking), but all the studies, surveys, and data show the opposite. When a child signs, they have a better grasp on language, sentence structure, and vocabulary. Their IQ is also increased. And they’re more able to sign at a significantly younger age than say words. So why not sign? When we were preparing for Piper’s arrival, we knew that signing to her was going to be even more integral to her development.

We started signing to Piper almost as soon as she came home from the hospital. Just Mom and Dad to start. Every time we said “MOM”, we’d sign it at the same time. I honestly didn’t expect to see a sign for a long time. Just before she turned six months old, she signed “Mom” for the first time. It was shortly followed by “Dad” and “Dog.” When she used them, she wasn’t mimicking us- she was asking for us. She did them without us showing it first.

When she turned a year old, she had almost 30 signs. And she was putting two or three together. At two, she was doing full sentences, and had almost 250 signs in her repertoire. She even cracks jokes.

Because she signs, we have alleviated loads of frustration (for both her and us!), we have a wonderful glimpse at the things she’s interested in, and we have a great idea of what she’s capable of doing.

Piper has made some huge speech gains since we started with a new therapist in July. She’s using PROMPT therapy, and it seems to be working (Piper even prompts herself.) She’s vocalizing sentences (although the words are, admittedly, approximations, but they’re close enough to understand!), trying more types of sounds, and getting over her extreme over-conscientiousness that has precluded her from showing us what she’s capable of. We have to remind her to “use her voice” frequently, otherwise she’ll just mouth the word correctly. Piper works so hard to talk; it’s so heartbreaking to watch her get so frustrated when she can’t do something as well as she wants. But bygolly if she doesn’t keep going, week after week. I can only imagine that the frustration level would be multiplied if she didn’t have another way to communicate, too!

I get asked a lot about how we learn our signs. The most popular route seems to be the “Signing Time” series on DVD. We have a few of those, and they ARE fun to watch, but Piper’s not really allowed to watch television, so we don’t use those much. Books work fine, but I have a hard time figuring out the motion of signs sometimes.

So, when we started, I paid attention to the words we said most frequently in our day. I looked them up on aslpro.com, where you can look up the word and get a video of a real person doing the sign, and then we showed them to Piper. Once she got the idea of signing down, we’d start looking up signs for things we were going to do (like play with bubbles at the Children’s Museum, for example). I started with nouns, and then threw in a few adjectives along the way. She then quickly picked up verbs because you need verbs to make sentences make sense. Now we’re starting to run out of things to learn, and we’re pushing the word itself instead of the sign.

So yes- we sign with Piper. And yes- we expect that she will talk. No, she does not have hearing problems. But by signing, we felt like we were giving Piper a way to cope with some of the challenges that come with Down syndrome and allowing her to be a part of the world around her. Of course we often have to “interpret” for people who don’t know what she’s saying. But our friends and family have been so great with learning along with her, and if they don’t know what something means, they always ask. It’s really awesome to see so many people learning for her, too!

I think that signing with Piper has been the single best thing we have done. It seems that most families with young kiddos with Ds have signed with their kids, and I’m sure they’d agree. We’re starting with Addy now, too, and I’m not sure that she’s said “mommy” a time or two. Anyone can benefit- not just kids with special needs!

Although- there is a slight setback. Piper back-talks her therapists. She scolded our OT the other day for being “too noisy” when Addy was trying to sleep. Piper was, of course, just trying to get out of work. She is two, after all.

“Truck”
(one of her new favorites- it’s accompanied by a “t t t t t”- and we hear it about 480,000 times whenever we go in the car)

“Shoes”

“Listen”
(this is one that she gets told more often than she says, but we won’t go there…)

Will she ever walk?

2011-10-04T21:42:00.001-06:00

As a parent of a child with special needs, there are some questions that you get routinely enough that you are tempted to tattoo your child on the forehead with the answer.

(And I’ll take this second to reiterate that I’d ALWAYS rather someone ASK a question than assume and have the wrong information! Please always feel free to ask!!!)

One of those questions I get is “Will she ever walk?”

My response has always the same: OF COURSE! And since she started walking, I’ll casually put Piper down or take her out of the stroller so that they can see for themselves (under the auspices of an antsy toddler, of course…) I think it bugs me mostly because it’s so obviously a (completely misguided) stereotype.

Kids with Down syndrome have a tendency toward low muscle tone. They aren’t as strong and they have a harder time with muscle coordination than their typical peers. This makes motor functions (gross motor like sitting, walking, running, and fine motor like pincer grasps, coloring, and writing) significantly more difficult.

It does not, however, mean that our kids are incapable of accomplishing these milestones. Sure, they may come a bit later, and sure, they require more work to get there, but they DO get there.

Just like their typical peers, no two kiddos with Ds are the same. They all do things on their own time, and often times, in their own order (Piper, for example, was pulling to stand and cruising before she could get herself INTO a sitting position on her own). But it doesn’t mean that they all learn to walk when they’re, say, eight years old. Piper:

Sat well enough not to worry that she’d tip at 9 months (7 months adjusted for her prematurity)
Army crawled at 11 months (9 adjusted) and quadraped (hands-and-knees) crawled at 14 months (12 adjusted)
Cruised at 12 months (10 adjusted)
Walked 15 feet independently at 19 months (17 adjusted)

Not that different, is it? Just because a kid has Ds doesn’t mean that they’ll be significantly delayed in all (or any!) area. “We” (ie Piper) worked really hard and had many therapy sessions to help her reach these milestones, but the point is that she DID meet them. Piper does fairly well when it comes to gross motor skills, but there are other areas that are more difficult for her (like speech- more on that later, though). All kids have their own areas of expertise and areas that don’t come as easily. That little extra genetic material doesn’t change that!

Random Fact, part 1

2011-10-03T19:51:00.001-06:00

Did you know that 80% of babies with Down syndrome are born to women UNDER the age of 35?

While it’s true that as a mom gets older, her risk for having a child with Ds increases, but because of the number of babies born to younger women, MOST moms are younger than 35. In fact, more babies with Ds are born to moms 26 years old than any other age (which was how old I was with Piper!)

There’s a lot of women out there who think that, since they’re NOT “of advanced maternal age,” they have NO risk for Down syndrome. My OB talked to us about Down syndrome, just like he does ALL of his patients, the first time we saw him at 8 weeks. We “knew” we had a risk. We didn’t, however, know that it was going to be our reality. That conversation will always be emblazoned in my memory because, I think, it was meant to gently start preparing us.

Unfortunately, even though we knew the statistics, we didn’t know any other young families. And it was horribly isolating. I felt like we were the only ones “like us”. And, to a large degree, we were. We were the first of our friends to have a child with a disability. And that is probably the single largest reason I got into blogging- to find other people like us!

One of the hardest assumptions to hear someone say is that, since we were young, it means there’s something “wrong” with us. Down syndrome is a random, naturally-caused (ie there’s nothing, like lack of vitamins, lifestyle, alcohol, drugs, etc) error that can occur in any pregnancy to any couple. And who’s to say that “error” is a bad thing???

What Down syndrome IS

2011-10-02T20:12:00.001-06:00

What Down syndrome is:

occurs when, during cell division at conception, an error creates three copies of the 21st chromosome instead of the normal two. Because of the triplication, it’s also known as Trisomy 21, or T21 for short. Any chromosome, or part of a chromosome, can be triplicated. Most of these, however, do not allow a baby to make it to birth. T21, then, is the most common genetic abnormality in live births.
an alteration that can make it harder for individuals to learn. However, it does NOT make them incapable of learning. New theories are unfolding that are teaching US how better to teach these kiddos. While it’s true that it generally comes with some degree of cognitive disability, that degree is widely variable. In fact, new research is showing that there’s a tighter correspondence between the IQ of a child and their parents than the child and their peers with Ds.
a list of common physical features. Kids with Down syndrome look similar. However, they first and foremost look like their families!
a syndrome that raises the cute quotient by approximately 10 fold. Don’t believe me? Take a gander at the munchkins on the list to the left. Just be prepared for your teeth to ache from the sweetness.

Down syndrome is NOT:

a death sentence for the child or a burden on their family (OR SOCIETY!)

a guaranteed “limiter” of success- there are plenty of adults who function independently, happily, and contribute to their community! As we learn more about the disorder and how to better cater toward their learning needs, the educational potential keeps expanding. It appears as though there’s no ceiling to their talents!

a dark, dreary place. Just spend five minutes with one of our kids, and you’ll quickly see otherwise! Of course, Down syndrome is not happiness bottled up, either; spend five minutes with one of our kids on a BAD day, and you’ll quickly see that, too.

WHO a person is- it’s part of what makes them who they are. They are loved, valued, and doted on. They are blessings just like their typical peers. They are not more or less special, more or less deserving, or more or less loved.

Piper is Piper, and we couldn’t possibly be more in love. We love her for all of her- 47 chromosomes and all!

We Stepped Up!

2011-10-01T22:31:00.001-06:00

Last weekend, Denver had their annual Step Up for Down Syndrome Walk.

We organized a group of about 60 walkers- our community group walked together; it was really fun to celebrate all the little munchkins who we love so much!

Before the walk started, they took a big picture of all the kiddos together. Chaos? Um, yes. Piper was a little late getting up there; they were practicing getting everyone to wave at the camera, so when Piper walked up, she thought- no, she knew- that they were all waving at her. Goof ball. She made friends with a nice lady and sat in her lap for the picture. How cute are they???

Once that was done, the walk started so we headed to the start line. It’s a two-mile loop around Central Park here in town. The weather was gorgeous (I was ROASTING in the long sleeved shirt I thought I’d need at 8am) and it was a perfect day for a lot of fun!

She’s READY!

Piper and her best buddy, Cadence- how awesome that even at two years old, you get support like this from friends???

A two-mile walk requires multiple means of transport. Despite her early wake-up call, she did a decent job walking on her own.

Dad’s shoulders were mode number two…

And a (padded) wagon was number three. The girl knows how to ride in style.

It was a great day to, literally, stop and smell the flowers!

The poor little munchkin was ready to fall asleep by the end of the walk, but I really wanted her to cross the finish line by herself this year. So we really upped her when we were getting close. There was a young man, in his twenties, that joined our “upping” and got so excited that the walk was almost over. I’m not sure, though, if he was excited that it was almost done so he could stop walking, or if he was excited to celebrate with the end. Whatever it was, his enthusiasm was excellent, and it was a real kick getting to share high fives at the end.

We got back to the tent and enjoyed a barbeque lunch with the family and a concert in the park. Piper also enjoyed changing out of her pants and into shorts. I, on the other hand, was still in long blue jeans and a long sleeved shirt. I’m still not sure who’s dumb idea that was.

Piper RAN. All afternoon. She even had her great grandma chasing her. She, of course, thought everyone she saw was there to see her, and we ALL got our exercise. After lunch, we got cleaned up and packed away and headed back to the cars. Poor, poor Piper.

Going…

…Going…

GONE.

Big, HUGE THANKS to all the families that were able to join us! And MEGA thanks to my mom and dad for helping with tents for shade and barbecue and… well… EVERYTHING!!!

What a great way to gear up for October!!!

Happy October!

2011-10-01T22:26:00.001-06:00

Do you ever feel like everything has a day? Seriously- April 30 is National Honesty Day. June 17 is Eat Your Vegetables Day. Heck- even watermelon has it’s own day (August 30, in case you were wondering…)

But months, months are more prestigious. You have to be more than cotton candy to get a whole month (December 7- FYI).

October is Down Syndrome Awareness Month. And along with gillions of other Ds bloggers, we’re celebrating with daily posts (big breath here- surely I can manage 31 days, right???) showing the true side of Down syndrome. The side that medical professionals don’t see and don’t advertise. The side that’s inadvertently and unfairly hidden in the shadows of society.

Anything YOU’D like to know? I think that a lot of times questions go unanswered and assumptions are made because no one knows if it’s okay to ask. Please feel free to ask away!

Are you excited? We are!!!

I’m thinkin’…

2011-09-27T19:54:00.001-06:00

…that maybe, just maybe, we need to start checking the zucchini plants a little bit better.

Luke told me that he thinks Addy will now be permanently scarred by ginormous vegetables. And that he’s blaming me for her not wanting to watch Veggie Tales when she’s older.

Apparently the lack of bush supervision had nothing to do with him…

Forbidden Love

2011-09-27T07:44:00.000-06:00

Piper is in love with my mom’s Boston terrier, Stitch.

In fact, “Stitch” was on the of the first words Piper said. It comes out like a “schjxz” kind of sound, but it works. And we know what it means. Of course, it’s the same sound for sandwiCH, lunCH, CHicken, CHinchilla, CHeese… you get the picture.

Anyway, any time Piper sees a Boston (they all look so much alike), she gets uber excited and starts calling Stitch’s name. And any time she gets close to a Boston, she starts giggling and asking for kisses (much to my mom’s chagrin.)

We went to my grandparent’s house the other day; their dogs Sassy and Starr, also Bostons, were sent outside while Addy was on the floor. Piper felt bad for them and talked to them through the screen door forever. They’d come up to the screen and she’d crack. up. She had so much fun with those silly dogs; and we couldn’t stop laughing, either!

I can’t imagine that it’d feel very good to lick the screen, but the sweetness of a cute little girl on the other side was worth it, apparently.

Yup.

2011-09-26T21:05:00.001-06:00

…‘cept when she’s not.

Oh Good Gravy

2011-09-26T20:58:00.001-06:00

I’m going to blame it on the fact that my computer somehow reconfigured itself to disallow any attempt at a stable internet connection for about two weeks. Fan-freakin’-tastic. Especially since if I lose my internet connection while I’m working, I get kicked off until it sits overnight. So not only have I been neglecting the blog, but I’ve been neglecting my work duties, too. Wonderful.

It’s been a busy few weeks with LOTS going on, including a trip to the mountains, our Step Up Walk, Addy’s four-month birthday… So hang with me while I make some kind of attempt to get caught up.

…and unless a certain little twerp decides to start SLEEPING sometime soon, it may take longer than anticipated…

What do you think?

2011-09-14T20:06:00.001-06:00

With this pose, I wonder if she has a career as host of the Late Show in her future.

In the not so distant future, I see her getting away with murder.

Man, I love that grin.

Playing Dress-Up

2011-09-14T19:55:00.001-06:00

The joys of having a big sister…

Getting it juuuuuust right…

What do YOU think, Addy?

I’m not sure WHAT Addy thought- she was dead set on attacking Piper after the fashion show…

Nothing I love more than taking a break from work to peek around my computer screen and seeing these interactions. They SO love each other. And it’s way too sweet.

We’ll just ignore the fact that Addy’s no long on the playmat, okay?

One Step Forward

2011-09-12T12:59:00.001-06:00

28 months.

(Reliably) 20 pounds.

Forward facing.

It’s a big day.

Remembering

2011-09-11T21:36:00.001-06:00

Church today started out with snippets from the news casts of the 9/11 attacks. I don’t think I’ve seen large blocks of the footage since 2001.

That was the day that Luke, my then fiance, was “at war.” It was the day that we started talking about deployment, war exercises, increased security on base (to the point that he couldn’t get on OR off); we had no idea what was happening, where things were going, or how quickly they were coming.

I had been in college for about a week-and-a-half. San Diego was considered a higher threat because of the ports, the military bases around, and because of the proximity to LAX. For the weeks after that, Luke got drafted from his unit to do base security; he worked horrible, relentless hours and wasn’t allowed to do his normal job.

He didn’t end up deploying until February, 2003. We were still able to get married the summer before he left. I felt like we lived a life in limbo- he was imminently deploying for months before they got the final orders. I decided to move back home and take the semester off from school. There were wills to complete, powers of attorneys to fill out, and documents that questioned who I wanted to be with me if they had to tell me something had happened to Luke. It was a lot to cope with being a 19-year-old newly wed.

But he came home. And now our life is normal. He wasn’t left with any scars that carry over into our lives. We have our little girls, and life is good.

To all those who never made it home, to the families who were left behind, to those whose lives will never be the same, we remember.

How lucky is she?

2011-08-31T16:05:00.001-06:00

Oh, to have your very own, live baby doll.

Review, Please!

2011-08-28T20:02:00.001-06:00

I’m thinking a little refresher course in appropriate peekaboo play may be in order.

Peek-a…

BOO!

In her three short months on earth, Adalynn has mastered the “holy moly, I’m so scared” look. Poor thing.

…but she didn’t seem to mind too much.

Complete and utter chaos

2011-08-27T18:49:00.001-06:00

I found out a few weeks ago that one of the city pools was going to the dogs.

Literally.

They were devoting the last few hours that the pool was open for the summer to all the canine friends. Lots of pools do this here- they figure that since they’re draining the pool anyway, why not, right?

And given Piper’s obsession with the four-legged companions, I thought she’d get a real charge out of watching them in the pool. We have labs, who also love to swim, so this had to be done, right?

Good heavens. I’m not sure who’s more exhausted- me, the girls, or the dogs.

As we were walking toward the pool, Piper decided to have a fit and cry the whole way. I kept promising that she’d have fun (“Just wait until you see what we’re doing!!!”), but it wasn’t going well. AND Addy had decided that surely it was time to eat (‘cause it’s always time to eat, right???) I had Addy in the pack and Piper had to walk. Luke had the dogs. I was just about ready to turn around, lol. Maybe this wasn’t as good an idea as I had thought.

We paid to get in, and then there were two gates to go through (to prevent any escapees). We got through the first gate, and Piper’s unhappiness turned to ecstatic glee as she saw all the dogs- phew. And the dogs? The dogs went SPASTIC. So now we had a crying infant, a screaming toddler, and two hopping, galloping, crazy dogs. I was sure that we were labeled as “that” family. Until I looked up, and saw the chaos that was EVERYWHERE.

There was a guy on the intercom that kept saying “Please try to keep you dogs with you at all times”, which was one of those “you’ve GOT to be freakin’ kidding me” kind of comments. I’m sure it was for liability issues; there’s no way you could. At all. It was absolutely hilarious to see bulldogs in the water, Chihuahuas being held with their owners in the water, poodles falling in, labs swimming; long-haired, huge dogs, little tiny dogs… They all had one thing in common- staying near their owners was not their priority.

And it was absolutely hilarious. I HAD to nurse Adalynn, so I attempted to find a spot in the shade on the ground to do so. Luke took Piper to go and find the dogs. My attempt to get pictures was futile; I had big hopes of funny pictures, but that quickly turned to hopes of maintaining the security and safety of my little munchkins. And maintaining dry munchkins (which did NOT happen.)

Luke and I switched kids for a few minutes; I wanted to try and get Piper’s picture in the water. It’s lovely when your kid RUNS into the water and goes deeper than you had anticipated. When I grabbed her hand, she sat. Sooo, this is the only picture I have of that.

Maggie swimming- and loving it.

Maggie going down the slide (yes, my husband threw the ball down the slide and made the dog chase it. Dog abuse???)

Where was Duncan? I have no idea.

We eventually had enough fun (the dogs, I’m sure, felt otherwise), and decided it was time to go. But before we went, I wanted to try one more time to get a picture of Piper.

The half second I managed:

…and then she was off running (did I mention we were exhausted???)

…at least Addy stayed put, but she made her dislike of her hat plainly known.

I think she forgave me, though.

FAILING. I’m SO Failing.

2011-08-25T20:18:00.001-06:00

Addy’s three months old.

That’s 92 days.

Surely, you’d THINK, that during that period, I’d have been able to capture at least ONE decent picture of both girls together.

But you’d think WRONG.

Without further ado, a catalog of my most recent attempt...

Not terrible, but Addy’s thrilled, can’t you tell???

I get the feeling here that Addy can sense Piper’s about-to-be orneriness. Maybe it’s a special skill that second kids innately get- you know, to protect them from the whirlwind that is their older sibling. Call it self preservation?

Piper loves the idea that Addy is scared pants-less??? Maybe.

An unapproving look from Adalynn.

Fish-hooking is a good skill to learn young, right? I’m sure it’s acceptable in a preschool environment.

This one cracks me up. Apparently I was holding their attention quite well. And for the record, Addy is NOT that close to Piper’s size. I think that’s part of what makes it look so funny!

Piper’s tired of Adalynn getting some attention and not playing along with her as she’d like. So she pulls her away to, um, enforce submission.

Have no fear; I think that Nana is going to help as photographic reinforcement soon; maybe with two of us, we can get something that’s worthy of the real cuteness we get to experience at our house!