Tuesday, August 28, 2012

Monkey

Addy climbs on everything.  I routinely catch her on our countertop-height kitchen table, standing in the center.  She dances on the kid-sized tables.  Climbing, jumping, running- some of her favorite things.

But for all the time that she spends moving “up” in the world, she occasionally catches me off guard.

Like when I went in her room to put away laundry and found this:

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Apparently she wanted to find out how big she was.  By climbing on the rocking chair, standing on the arm (I assume) and climbing onto her dresser.

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How can you not laugh???

One more incident that didn’t result in an ER visit.  Life is good!

15!

Fifteen months.  Sounds so big, doesn’t it?

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Addy had her quarter birthday last week and celebrated by staying home with a grumpy-as-all-get-out sister who was recovering from having her tonsils out.  She’s a lucky, lucky girl, that one.

She had her check-up at the doctor last week, too.  While Piper got to wander the hospital corridors, participate in the craft activities that some airmen from the local Air Force base were putting on, and looking at the fishes, Addy got two shots and a blood draw.  I’m sure that in the midst of screams, she yelled something along the lines of “how the heck is THIS fair???”  The blood test was the most fun- just a finger prick.  That wouldn’t stop bleeding.  The phlebotomist said that Addy was “the best bleeder she’d ever seen…” and sent us on our way with four extra band aides and a handful of gauze.  We didn’t go far- I was NOT leaving the grounds until she stopped bleeding, but all’s well that ends well, right?

17 pounds.  29 (and a little bit) inches.  Definitely still a mini munchkin.

What else is she up to?

  • I made a list of the words she uses on her own for the doctor.  Well over 100.  …No one warned poor Luke of the complications of having girls- he may never get to speak again…
  • She climbs on everything.
  • She LOVES to play dress up.
  • She can spot a dog from a mile away.  And if she can’t see one, she asks to see one.  Which is oh so convenient when you’re at the grocery store…
  • Can throw a tantrum like none other.  It’s really rather ridiculous.  Still not sure what to do with those.
  • Can undress herself in 3 seconds flat.  And has much practice in the feat.
  • Seatbelts on high chairs, shopping carts, and strollers are no match for her.  No matter how tight.  If it’s too tight, have no fear- she’ll just stand up and leave her pants around her ankles.  Classy.
  • Enjoys coloring.  Especially the cabinet doors, table tops, hardwood floors…
  • She. is. ornery (but I bet you could have guessed that part?)
  • Has the cutest smile in the entire world.  Especially when she crinkles her nose.
  • My favorite phrases are “alright”, “I did!”, and, obviously “mama”
  • She is Obsessed (with a capital “O”) with babies.  We were at the store the other day and she kept trying to walk over to a lady pushing a stroller.  I finally gave up and picked her up, at which point she glared at me and said, as clear as a bell, “I want that baby!”  Hilarious.
  • She still doesn’t sleep.  If you saw us in person, it’d be no surprise.  I’m sure I look like a zombie 24/7. 
  • She is hilarious.  Between her and her sister, we rarely stop laughing around here.

As difficult as she can be, she really is the sweetest, cutest little munchkin.  The random leg hugs as she runs through the kitchen get me every time.  I’m excited to get to spend some time with just her and me four days a week now that Piper’s in school.  I cannot believe how fast she’s growing!

Water World!

We have a huge (“America’s Largest!”) waterpark here in town.  We had season passes there as a kid, so we spent many, many hours going down slides, on rafts, and in wave pools during the summer.

And this summer, we decided that Piper would actually be big enough to enjoy the rides.

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So, to celebrate the end of summer, Luke and I left Adalynn at my mom’s for the day (thanks, mom!) and had a Piper date at Water World.

P1170494Running to the wave tech pool- she had no idea what it was, but it HAD to be good!

P1170497Yup, it was good.  But she had a death grip on my hand.

She did SO good!  She even liked the big, scary, dark Dinosaur ride.  She’s, obviously, not big enough to ride the individual rides, but there are so many family raft rides that we easily filled our day.  She even walked most of the time, which is a lot (you have to carry the tubes to the top of the hills so that you can ride the ride down to the bottom…  a lot of steep, long hills!) P1170510

It was the perfect end and send-off of our little twerp to preschool.  Big girls get big treats, right?

And speaking of treats, she had to have an ice cream cone, obviously.  But first was a nice little catnap to re-energize.  P1170514

To wake her up, I got a cone.  Too bad it melted before we got back to our chairs…P1170520

And as good as the ice cream was, she thought she still needed a cookie.P1170522

She won.P1170525

She enjoyed it so much that I think we’re going to get season passes next year.  I’m sure that Addy will get a kick out of it, too, and it’d be fun to be able to go for a few hours here and there.  As hard as it is to see them growing up, it sure is fun to experience big kid things, too!

Anything you can do…

Adalynn is enamored by her big sister.

I’m fairly sure that most of that adoration is bred by Addy’s amazement of all the cool things that her sister can do.

So what’s a little sis to do?

Do it too, of course.

And that, my friends, is what brings wails from the other room caused by this:

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Or how this:DSC_1651

…quickly turns to this:DSC_1676

And this…DSC_1797 (2)

…to this…DSC_1798 (2)

…and ultimately, this.DSC_1803 (2)

Because, obviously, if Piper does it…DSC_1671

…it has to be fun.DSC_1660

I don’t think she understands that she’s six inches shorter than Piper.  Or that she’s, you know, two years younger.  She has no concept of what she should and shouldn’t be able to do. 

If I’ve said it once, I’ve said it a thousand times:  If we can make it to Kindergarten with no broken bones or stitches, I’ll find myself very lucky.  Some days, I feel like I’ll be lucky to make it through the weekend…

Monday, August 27, 2012

Piper’s First Day of SCHOOL!

Today I dropped Piper off for her first day of preschool.

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She turned three right before the end of the school year last year, so we chose to just let her start this fall with her classmates.  I think it was good- we had the whole summer to NOT do therapy (we, literally, have not had a session of therapy since May), both girls got the freedom of a perfectly clear schedule, and we just got to enjoy.  I was super nervous in May about the transition, but the summer let me look forward to her new adventure.

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Don’t get me wrong- it sure felt weird walking her to school, taking her in, and just, you know, leaving her.  How can she be that big?  She even walked up to the door with her backpack on, all by herself.

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But I feel like she’s ready.  I feel like she needs more.  And I know that she’s going to love having her own friends, singing songs, and learning new things.  I think she needs the independence.  I can’t wait to watch her grow. 

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But the first thing she’s gonna have to learn is how to not be completely exhausted at the end of her three hour class.  I’m sure that the fact that she hasn’t eaten much in the last week and a half after her tonsillectomy, the way she ran all the way up the block with her backpack on before school, and the mediocre night of sleep had nothing to do with it…

Saturday, August 4, 2012

Piper’s Summer “Fun”

Since Addy has stolen the show this summer, I need to go back and fill in all of Piper’s fun from the summer.

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At Piper’s 3 year checkup, I asked her doctor if there was a reason to wait until next summer to do a sleep study, or if we could do it now and get it out of the way (kids with Ds are supposed to get a sleep study by their fourth birthday; Piper’s never shown any concerns in that area, so we’ve never had one done.)  Piper has really large tonsils, and I’ve been a little concerned that maybe they were causing some issues.  She sleeps fine, and doesn’t snore at all, but if there was no reason to wait to do the study, why not?

I didn’t call immediately to get an appointment- the wait to get a study, especially a routine study when nothing is overtly “wrong,” can be long- but called after the first of June.  I was really just hoping to get it done this summer, before school started.  I talked with the scheduler and she asked if we’d like to be put on a waitlist.  Get in sooner?  Sure.

She puts me on hold, comes back, and says they HAVE a cancellation, and that we could get in in a week and a half.

Well, that’ll do.  Cripes.  I had NO intention on getting in that fast.  Not that I complained, mind you, but holy moly!

Unfortunately for Luke, since Addy doesn’t do well at night with anyone but me, Luke got volun-told to do the study with Piper.  Lucky guy.IMG_20120612_053342[1]

Look happy?  Not so much.  But they both survived and were no worse for the wear the next day.  We went on with our business until the ENT clinic called because the Sleep clinic requested that we be seen by them.  I knew at this point that something was up, but I was confident that it was her tonsils.  And it couldn’t be too bad because she’s never had trouble with sleep.

So, back at the first of July (yeah, right in the middle of all of Addy’s drama,) we had an appointment with the same ENT that did her major surgery back almost two years ago.  I liked him a lot better this time, and he really seemed to remember a lot about Piper and her case.  Always reassuring.  He said that she showed very minimal signs of sleep apnea (she had 2.5 episodes per hour; they start getting a little concerned at 5, but it’s not terribly uncommon, especially in the Ds population, to have numbers in the double-digits.)  He then looked in her mouth, saw the tonsils, and recommended just getting them outta there.  She’s going to end up with them out, anyway, and it may help keep her healthier this winter.  He was a little concerned that the obstruction could being caused by the airway issues of two years ago.  He said it was highly unlikely, but that he’d like to do some scopes, just to be sure.  That was exactly what I wanted to hear.  Always nice when you don’t have to ask! 

We left ENT clinic and took Piper to get her C-Spine xrays.  They used to be standard for all three-year-olds with Ds, but the new care regulations state that they’re needed only if symptoms are present.  It hasn’t really set well with me, so I was glad when her pediatrician recommended getting them done, just because she’s SO active.  She said that she’d probably end up in athletics of one kind or another, and this way it’s already done.  My BFF is a Child Life Specialist at Children’s, and she helped get the films.  While it wasn’t a particularly fun experience (they have to get films of her lying flat, lying with her head tilted as far back as possible, and as far forward as possible- not an easy task for a toddler…), Piper did really well.  Those came back CLEAR, so we don’t have to worry- whoopee!

After a few more days, the ENT scheduler called to set a date for the tonsil and adenoidectomy.  August 15.  Exactly 8 days before school starts.  This could be interesting… 

It also means that next weekend is her last REAL weekend of summer vacation.  We have some fun things planned between here and then, but I feel like our time is ticking.  All of Addy’s junk has kept me pretty distracted, which I guess is a good thing, but now I’m starting to get a little nervous.  She does get to stay the night at the hospital, which is a big relief to me, and I’m hoping that school will act as a nice distraction, but I’m starting to very much not look forward to this.  <<Sigh>>  I can’t complain- I’m the one that asked for it, right???

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Adalynn, the (hopeful) Finale

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Luke and I took Addy to her neurology appointment on Friday.  It took a month to get the appointment, which at the time, felt like an eternity.  But, really, I guess you can’t scoff too much.

Funny thing is that, with everything going on, I haven’t really had time to get nervous about it.  But as we were sitting there checking in with the nursing staff, it hit me that this was a big deal.  They asked which pharmacy they should send prescriptions to, and it occurred to me that this meeting could have a completely different outcome than I had assumed it would.  I’ve gotten pretty used to foreseeing what we’re facing with each appointment we go to with Piper; this bit with Addy has me thrown into a world where I know nothing, and I think that’s part of what makes me so nervous.  At least with Piper, I had done enough research before she was born to have a fairly good foothold on most of our possibilities; I haven’t had that “luxury” (yes, I use that term loosely) with Addy.

The neurologist we saw was incredibly nice.  I seriously liked him, and that put me at ease.  He played with Addy the whole time, sometimes for a purpose, and other times just because he thought it was funny.  He looked her up one side and down the other.  He looked at her eyes closely.  He looked at her skin under a black light looking for any hard-to-see birth marks.  He did a full neurological exam, watched her move, and watched her play.

And while it wasn’t exactly what I thought he’d say, it wasn’t terrible, either.  He’s as certain as he can be with the limited information we have that it was a series of seizures.  The diagnosis that’s been in her files so far has been something in the Syncope scope, but he changed it to Convulsions-NOS.  It’s been mentioned several times that maybe it was just a breath holding spell, which I have never really bought.  He didn’t either, at all.  So, not that I’m glad, but I am happy that we’re on the same page.  And given that, he said that she has a one in three chance of having another episode.  Not great, but it’s certainly not a given.  If she were to have another, it’s most likely to happen within six months.  It’s rare to happen after 12 months, and by 24 months, you’re out of the woods.  He said to keep a very close eye on her until that six month mark.  We’re not supposed to allow her to have a fever (give Tylenol prophylactically after immunizations and quickly if she gets a fever from being sick), not let her sit in the bath by herself (uh huh- go fig, huh??) and try to limit activities where, if she were to have a seizure, she’d get hurt.  We’re to call 911 as soon as she starts seizing, just in case she has a hard time recovering, and he gave us a list of instructions to use if she seizes again.  If she behaves herself, we go back in 4-6 months.  If she has another seizure, then we’ll go back sooner and start medications. 

Phew.  It was a lot of information, but I feel better with at least a little bit of closure to the whole thing.  Looks like we’ve come to a conclusion about what it was (which has been more of a relief than I thought it would), and we have a plan as to where to go from here.  And I feel like we can make it another five months; by Christmas time, I can start to relax a bit more. 

Can you please tell me how 16 1/2 pounds can cause so much trouble??? 

I think my mantra will always be “at least she’s cute.”

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Wednesday, August 1, 2012

Pizza?

Piper has had pizza exactly twice in her time here on earth.

So why she told me she was making pizza with rocks, a cardboard circle (from I don’t know what) and the sand table, I have no idea.

She was pretty cute, though, and darn proud of herself.

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Adalynn Update

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This is our goofy kid, Addy, who, if you remember, topped the naughty record previously held by Piper. 

Since a lot has happened since June 25, I thought I’d give a quick update.

Addy had an EKG on July 6 which she hated.  You’d think that it burned or poked or drew blood or something.  “Overdramatic”, I’m afraid, may be one of her key descriptors… 

While we waited for the results of that, she had an EEG on July 9. This. was. terrible. She screamed the entire time. The tech that was doing it joked that “she’s seen it all” as far as fits, but even admitted at the end that she was “thoroughly impressed.” Major kudos to those mamas who have to do these routinely. Good grief, I could go a lifetime without another one, thankyouverymuch.  It took a few days to get those results back, but it was clean as well. Phew! I was super glad to get that over with… We see Neurology on Friday this week (August 3) and fully expect to hear “until it happens again, we’ll just wait and see…”

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Later in the week after the EEG, we got the results that the EKG looked normal on the first read, but on a second read done by the head of the department, they thought they saw something that could be a BIG deal (as in something that causes the high school basketball player to have a heart attack during a game and pass away…)  We elected to go in for another EKG and an echo, just to rule it out.

The best part about this whole ordeal was that the amazing Heart Institute at Children’s got us in in two days.  And that included an appointment with the cardiologist- not just the tests.  That meant that we could have it done, and know what it meant, before we took off on a plane to the other side of the country.  Of course it meant that the day before we left I spent the day at the hospital (July 16), but I won’t complain.  Can you say “meant to be?”

She did much better this day, and so long as I kept her mouth full of yogurt puffs, we did okay.  Her heart is structurally perfect.  The cardiologist did say that her event could have been caused by some systems that regulate blood pressure, but that until she has another episode, the testing was more rigorous than the situation warranted.  So, unless something else happens, we’re cleared from that clinic.

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So, in short, we don’t have a clue what happened.  Reassuring, huh?

It’s been a rough month since it happened.  I’m totally ticked off that, after everything we’ve gone through with Piper, I’m back in this scared-out-of-my-wits place again.  How is it fair???  Haven’t we paid our dues?  I know that, when you have a baby, you have no guarantee about what your future holds.  I guess I was just na├»ve in “knowing” that everything would be easy this time around.  I know that this is really not a big deal in comparison to so many.  I know that.  But it doesn’t make it any more fun.  There’s something so unnerving about not knowing what it was.  All anyone can say is that it was a very concerning, very significant event.  And not that I want anything to be wrong- we didn’t want them to find anything- but it’s kind of hard to sit back and pray that it never happens again.

So, in the meantime, we’re enjoying her spunk and her zest for life (life must be a blast, because she enjoys her days so much she extends them late into the nights…)  The child is a dare devil, ornerier than sin, and cute as can be.  I’m afraid this little munchkin may give us a real run for our money…

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