Uncommon Misconception

Taming Tiny Twinkle Toes

I took Caroline to her slightly-delayed one year appointment on Friday.  I was quite proud of myself, considering the food poisoning.

All in all, it was a good appointment.  She's doing just great.  But she's tiny.  In fact, she's lost weight since her tubes were put in.  Which raised an eyebrow or two.  Still, she eats well and everyone was pretty well willing to chalk it up to the repeated ear infections and/or genetics.

I guess, when I say small, I should point out that it's only in weight.  She's still tall and nicely-pated.  I've likely mentioned before that I thought it was impossible to be skinnier and taller than Hannah, and yet...

Since I'm still nursing, they recommended I stop with the whole milk, offering food first, then water, just to make sure she's not filling up on liquids and skimping on calories.  Ah, the worries of a one-year-old.

And then there's the toes.  Her sweet, sweet, funny little toes.  It turns out that while I may find her toe-top antics adorable, they are not in fact desirable.  Caroline has been a tippy-toes kind of gal since she very first managed to pull to a stand.  She used to stand on the tops of her toes - as in, where the nails are - even flipping back to that position once corrected.  The doctor was worried that this could lead to a shortened Achilles tendon in pretty short order.  The remedy: shoes.

No problem.  I have shoes out the wazzu.  You know, from back when I was a first time mom and shuddered at the thought of Hannah leaving the house without her feet appropriately attired in matching footware.  (Okay, I wasn't that bad. But I did buy a ton of shoes.  In my defense, Hannah was a winter baby, and then she walked at 10 months, so I had a good excuse.)

So far, Caroline wavers between being enamored of her newest item of apparel, and supremely irritated.  They do do the trick, though.

Caroline's big birthday party is tomorrow.  I realize it's more for us than her, but I'll be poised with my camera nonetheless.

The Unholy Trinity

Puke, shit, and blood.

I have food poisoning.  I've managed to eat two graham crackers and one cup of applesauce over the past 48 hours.  And the word "hemorrhagic" has come up more often that I like - once is plenty.

I think I'm recovering, though.  Just in time for Caroline's re-do party.

Choosy

Help me out.

I finally got up the gumption to promote my photography.  I signed up for Rally Day at my former church.  It's a pretty big function with an audience prime-picked for my photography.  It's not only the church (which is large) but also all their daycare families.

I need to pick six or seven photos to print, matte, and frame for display.  That's where you come in.  If you have a flickr account, go check out my pics and pick a few faves.  I can't be expected to choose on my own.  And you guys are at least quasi-unbiased.  Try and pick a good spectrum.  They don't have to be clients, but they should be photographically strong.  (In other words - not my random unpolished family snapshots from two years ago.)

Kay!  Thanks!

Other Items Olympic

You know what makes Bela Karolyi even less intelligible?  Having your husband point out, via his best impersonation, the remarkable similarities between said coach and the Swedish Chef from the Muppets.  No really.  Try understanding a single thing he says now.  I dare you.
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Is it just me, or have male swimmers made the leap from mostly bird-chested, semi-geeky looking guys to flat out rock-hot over the course of the last one-and-a-half Olympics?
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Does it bug anyone else when a male American Olympian cups his breast rather than puts his hand over his heart during the anthem?  How hard is it to lay your hand flat on your peck, rather than leaving it distinctly concave directly under it?

Can We Talk About the Barrettes?

Gymnasts of the world, please explain this one to me.  Is there something unique about the performance of your sport that instantly gives you more flyaways?  Because, try as I might, I simply cannot understand the persistence of the scrunchie/eight-jillion barrettes hair combo. 

I love gymnastics as much as the next overly-leggy, high-center-of-gravity, red-blooded American gal.  But I can't seem to understand why the barrettes made it past 1983.  Surely there are products that can tame those wispy locks.  Or space-age polymerized headbands that would do the trick and manage to look a bit more trendy.  Or maybe you could get a haircut that does away with bangs or short layers.  Hell, you could even look into that new-fangeld bobbypin.  Whatever.  Just please, for the love of God, do away with the umpteen mismatched sparkly barrettes.

Thank you.

Something to Hang My Hat On (Or, Somthing On Which to Hang My Hat... if you want to be a stickler)

This post has been brewing for months and months.  I'll start it today, but I wouldn't be at all surprised if it takes me a few days to complete. (Ahem... I wrote that sentence one month ago.)

For years now, ever since I spoke openly about Thomas, his arthrogryposis, and our decision to end his suffering, I've felt myself flailing and scrambling to explain that his case was no "ordinary" case - if such a thing even existed.  I have struggled to explain what our doctors were telling us - probably because much of the detail was lost in the flood of grief and shock that comes with such a diagnosis.  I was left with a clear "big picture", but no real way to tell others why we were so certain that Thomas would not have survived.

Every now and then, an adult living with the disease comments and tells me that I made a grave mistake because arthrogryposis is not a death sentence.  Some are gracious and attempt to be civil and understanding.  Others are not.  I can understand the motivation - not wanting others who may find this blog to misunderstand their own case or that of their child's - but nearly all make the mistake of equating their circumstances to ours.

Here's the bottom line: if you are LIVING with arthrogryposis, the severity of your disease is not the same as Thomas's was.

And now, I can explain why.  Scientifically.

A few months back, while following the searches that lead to my blog, I found this study.  My blog and this medical anthology are both listed when one searches "necessary termination for arthrogryposis".  Intrigued, I read the whole entry.  No such information was available online at the time we were making our decision.  And I wish it had been.  Because it would have been easier for my scientifically-inclined side to understand what the doctors were saying within a clinical context. 

But for those of you who have better things to do today than read through dense medical texts to learn about a disease that most likely will never touch you or those around you, here's the main thrust:

The text cites a study* of 15 infants with severe arthrogryposis, who also had markers that indicated they could not breathe on their own (decreased fetal movement, micrognathia, polyhydramnios, and thin ribs). Thomas was suffering from all three of these medical conditions.  In this study, 14 of the 15 were confirmed to have arthrogryposis (one case was a misdiagnosis, and ended up being a different kind of severe muscle disorder), and of those 14 every single baby died when life support was stopped at anywhere from a few hours after birth to a couple of months.

Every. single. baby.

That is what the doctors were telling us, and that is what I tried to convey in all of my other posts before this.  Thomas would not have been able to breathe on his own.  And our decision to end his life peacefully, without the bone-breaking** pain and suffering of a delivery; without the risk to my own body from carrying a baby that would never live and all of the medical complications that come with that; without the myriad of emotional damage that would have come from the congratulations of strangers at the sight of my belly; all that Todd and I went through was to save Thomas from that indignity.  And I will forever know in my heart and soul that we did the right thing.

And now I hope that those of you who come here in defense of those living with arthrogryposis will understand that your circumstances were not ours, and that our choice does not diminish your life in any way.

*Between the time I began this post and now, the PDF has been redacted.  The pages that cite the study are no longer available.  So these statistics are now from memory.  But the conditions that indicate an inability to breathe without support are still available.

**Thomas's body was too frail to withstand delivery.  His bone density was so low that birth would have very literally broken him.

Didja Miss Me?

Wow.  I haven't slacked off that badly in a while.  I think.  Okay, maybe I have.  But this time it was mostly intentional.  I had to focus my efforts on my family's recovery from All That Sucks.

By way of an update without boring you to tears:

• Ear tubes, thou art more lovely than a summer's day.  Caroline got her tubes on Friday.  Well, barely Friday, if you ask me.  We had to be at the hospital, which is downtown, at 5:00 am.  Given our new far-flung address, that meant waking at 3:45.  And, given Caroline's routine of waking and screaming every hour, which led to my sleeping with her on my chest in the recliner, meant practically no sleep for me.  Caroline did great.  She didn't even cry when they took her out of my arms.  She was confused and fitful afterward, but ate a big breakfast when we got home (at 8:20, folks), and by that evening she was calling me Mama and babbling up a storm.  Saturday found her saying "kitty" and "Hannah" and "night-night".  Unreal.  Her sleep still isn't great, but we'll be working on that over the next few nights because...
• Hannah is on her first parent-free vacation.  Nana took her back to her house for a trip of undetermined length.  We were all thrilled with how well she took the whole idea.  There were a few protestations about "can't you come with me?", but nothing like we expected.  I know she'll have a blast.  And Todd and I can spend some time mending and sleeping.  It also means we can finally let Caroline figure out how to sleep again. 
• Just to keep us on our toes, the woman we had secured to take over Hannah's daycare at the end of this month backed out.  She didn't get enough enrollment and is headed back in to the "real" world for employment.  I was pretty shocked.  And then pissed.  And finally, disgruntled by the astoundingly poor choices I've found thus far.  I should talk more about this in my next post.  Unless it makes me cry.  Which it might.
• Hosted a party for a friend who just became a rep for a home-based food company.  That necessitated the completion of my cabinet-painting project.  I'm pleased to report they look lovely.  And the party was fun, even though not too many people could make it.
• Speaking of parties, we rescheduled Caroline's so I don't feel too bad about depriving her of a blissfully unaware, never-to-be-remembered party.

And now... I shall watch the Olympics and SLEEP! (knock on wood)

Happy Birthday. Baby

I know you don't feel well, and this wasn't the celebration we'd planned, but cupcakes and noisemakers with a family of four ain't too bad either.  And I already know that you're the kind of girl who is happy to make the most of the least.

I cannot believe my sweet Caroline is one year old.  It would be impossible to sum it up here.  You are the light and smiles for our whole family.  We cannot wait to celebrate decades and decades more.

Kisses and snuggles to my mischief-making wonder girl,

Love, Mom

"Suckfest", I Believe, Is the Most Applicable Term

I need to be on Twitter so the laundry list of things that have happened to this family would seem slightly less ridiculous, posting them as they happen.  But I'm not, so you'll have to take my word for it.

Caroline: Tuesday she came down with some horrible virus that caused high fevers, lethargy, no appetite, and general crying and pain.  This was on top of her double ear infection, oral antibiotic, and hail-Mary antibiotic shot. 

Hannah: Recovered from her pink eye and adenovirus in time to spend a day at Mrs. Barbara's on Tuesday. 

Me: Began antibiotics to fight off heinous sinus infection (see aforementioned family-style adenovirus).  Still felt like hell, but couldn't do anything about it (see aforementioned sick children).

Todd: Felt blah on Monday, but seemed to pull out of it unscathed.

Caroline: Had a horrific night, up every hour needing ear drops, Tylenol, Ibuprofen, nursing, saline drops, or some combination thereof.  Spiking temperatures of 103.7 while on both Tylenol and Ibuprofen.  Wednesday, her Ear-Nose-Throat appointment was scheduled for 10:40.  Todd took Hannah to Mrs. Barbara's again.

Hannah:  Wednesday morning, she woke up early, but in a good mood.  Todd got dressed and got her ready to go to Mrs. Barbara's.  Just before they left, she threw up.  It was mostly water, though, and because she said she felt fine, we figured she had triggered her gag reflex with all her residual congestion. Given our crazy schedules for the day, we decided she could go ahead on.  But once they drove all the way across town, Todd called to say she'd begun puking again.  He had her in the car, holding a tupperware bucket, on the way to a closing that he could not miss for a client... who happens to be his cousin.  Fortunately, she understood and Todd was able to skip out as soon as he got her settled at the title company.  He abandoned the rest of his appointments and headed home with a puking Hannah.

Me: Punch drunk from sleep deprivation the likes of which I have not seen since either child's infancy, I was impressed that I was able to stand and function well enough to care for Caroline.  I showered and got out the door with her, passing Todd and Hannah along the way to our ENT appointment.

Todd: Annoyed, sleep-deprived, not sick.

Caroline: She felt moderately well on the way to the appointment and even played in my lap for a bit while we waited for the doctor.  But during the examination, she became very lethargic and sleepy, laid her head on my shoulder and wilted.  The doctor and I agreed that tubes are the best option at this point.  We are at the end of our rope, antibiotically-speaking, and the likelihood of her having more ear infections is high enough to count as a certainty in my book.  Tubes, at this point, sound like a big sigh of relief because frankly, I want my super-happy, mischeivious baby back.

Hannah: Stops puking by the time they get home, but still doesn't feel well and takes up residence on the couch.

Me: Have a very frank discussion with the ENT doctor (who I like a lot, by the way) about our finances and the fact that we have a super-high deductible for our insurance, which means we'll be paying entirely out of pocket for this.  Not to mention our $500 PER PERSON prescription dedectible (the source of a public and embarassing break-down in CVS, which I hope to blog about in the near future).  He says he will have his assistant find the most affordable surgical center and that both he and the anesthesiologist can work out payment plans.  Still sounding like the Marlboro Man after a bender in Mexico, I take my snot-filled body and Caroline's furnace-like body back home.

Todd: Does a great job of taking care of Hannah.

Caroline:  Spends the rest of the day with fevers above 103, sleeping only in my arms, which preents me from doing, well, anything, really.

Hannah: Takes a nap.  A 4.5 hour nap.  This must be a record for her.  I don't think she ever slept that long even as a newborn.  Seriously.

Me: Thankful that Hannah is asleep because there's no way I can keep the two of them happy and away from one another simultaneously.

Todd: Leaves to go pick up his check and deposit it at the bank (so we don't bounce anything, see aforementioned doctors' appointments, prescriptions, and OTC medications).  On his way back he calls to tell me that he'll be longer than expected - he has a flat tire.  A few hours later, still with an oven-like Caroline asleep in my lap, I call to see if he's okay.  The shop found nails in his remaining three tires.  No, really.  Fortunately they were able to plug them.  I didn't even ask what any of that cost.  Todd makes it home round 6:30 pm.

Caroline: Has a really rough night, waking literally every hour.  But by 4:30, her fever finally seems to break.

Hannah: Feels well enough after her uber-nap to eat solids and has a great evening coloring and playing and singing "Who Let the Dogs Out".  She sleeps well and feels good enough to go to Mrs. Barbara's in the morning.

Me: Because of Caroline's frequent wakings, I have a bit of a backslide, feeling more snotty and congested than I had the day before.  But still, not entirely awful.

Todd: Gets up early to get himself and Hannah ready for Mrs. Barbara's.  This time, they make it without a hitch.

Caroline: This morning, her fever was gone and she even played for a while.  She did tire quickly, though, so I gave her some more Ibuprofen, nursed her, and put her down for a nap.

Hannah: God willing, is playing happily.

Me: With Caroline down, I managed to take a shower, wash the dishes, talk with a client, get some work done, and write this post.  It's just now dawning on me that perhaps a nap would have been smarter.  I'll stay here at home today, making sure both Caroline and I take it easy until we're completeley out of the woods.

Overall: We canceled Caroline's party.  I a bit bummed, but also relieved.  We'll find a time to re-do.  I'm praying that the rest of today is easier.  We need health and rest for all.

Phew!

The View from my Nightstand

I think Tertia once said something about your nightstand saying a lot about who you are.  If so, mine says, "Lassie!  Get help quick!"

Hannah was well enough to go to Mrs. Barbara's today.  Praise GOD!

Caroline decided to get another virus of some sort and had soaring fevers (103.7 even on BOTH Tylenol and Ibuprofen) as well as general miserableness.  Which is really unbearable coming from the world's happiest child.  I've never seen her like that and I wouldn't mind never seeing it again.  Tomorrow we go to see the Ear-Nose-Throat doctor to find out how to fix her persistent (c'mon - let's call a spade a spade - Tenatious Son's of Bitches) ear infections.

I'm feeling moderately better than I did yesterday and fighting off my own pink eye.  I swear, I cannot wait to get my head above water for even just one day.  We're this close to canceling Caroline's birthday party on Saturday.  If she isn't feeling well and the rest of us are still staggering, there's really no point.  Except that it's my baby's first birthday.

Bleeeehhh.