A place to keep our baby toys...

Little bear, it's happened.  We've run out of places to keep your toys.  Mommy and Daddy have decided to start looking for more space for you and all of your belongings.  We hope that you give us some closet space too.

Step 1 - Bare my soul to the mortgage broker - done.  We totally sound less poor than we are.  Score?

Step 2 - We are browsing some local listings and narrowing down our realtor search.  We're going to take you with us this weekend to meet one.  We think you're a pretty great judge of character, Aiders.  Make sure we pick a good one!

(Food) Trials and Tribulations

Last Wednesday, Aidan played hooky and we spent the morning with his wonderful Early Intervention Service Coordinator, Tam.  Tam loves Aidan and was super excited to see all of his progress.  I had a good feeling about that day - we talked about what services he needs and what would be best for him over the next half year - and I really felt like we had a solid plan in place.

Later that day, instead of making a triumphant return to school so mommy could get reasonable amounts of work done, we once again made the trek out to CHOP.  It was our first meeting with our nutritionist, and I'll be honest, I was nervous.  We haven't had the best luck finding care for Aidan since The Diagnosis.  (I think if it's bold, it's a little more ominous looking.  Think so?)  His doctors are medically stupendous but their bedside manner is nonexistent.

Anyway, we had nothing to lose, so off we went.  I wasn't disappointed.

Mimi is friendly and sweet and genuinely cares about Aidan and his quality of life - not just his disorder.  We discussed starting a food trial, and I requested rice.  Rice is pretty basic, gentle on the tummy, and was something that he used to love.  Also, it will help with his fine motor and feeding skills, and it will allow him to participate (slowly) in mealtime at school.

We also discussed formula changes - moving up to toddler formula in a 30 cal/oz concentration, adjusting his target to an attainable 30oz (instead of 55oz), and trying out some flavors.  Formula now comes in vanilla, chocolate, and tropical.  Sounds infinitely better than the current "rotting corpse" flavor.  We'd also like to try the EO28 splash juiceboxes, because, fun!

So the current plan -->
1. Rice Trial - 3 months, then a scope.  Wish us luck!
2. Back to the nutritionist in 1 month.
3. Back to the GI in 2 months to schedule the scope


FINGERS CROSSED!

WELCOME TO HOLLAND

I read this story several months ago.  Long before I knew that things with Aidan were anything other than they should be.  I distinctly remember reading it and thinking that it was touching, and how awful it must be to have something like this apply to your life.

As it turns out, we would learn.

This was written to help others understand what it's like to raise a special needs child.  Although my son isn't physically or mentally disabled, we are all too familiar with "special needs."  I call them "different needs," but it's all the same.  We find ourselves mourning the loss of our "Italian vacation", especially as we meet more and more Italy-goers.  But you know what?  Holland's pretty great too.  Holland is where we are, and we're learning the language and the customs as we go.  Sometimes we feel like we haven't brought the right clothes, and we don't understand the food, and dear god what's with those wooden shoes? - but Holland is where our little love is, and I wouldn't have him any other way.

 

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A tale of two (zillion) sippies

If you're anything like me, you have faced or soon will face something I like to call "Project You-Will-Drink-Out-Of-One-Of-These-Cups-So-Help-Me-God."  I don't know how it's going for you, but we suck at it.  Really, we do.

See, the problem is, bottles are awesome.  Aidan loves his bottles.  They are nice and round and comforting to hold.  Best ever, really

Attempt 1: Sippy Cups.  We have hard spout, soft spout, and weird rubbery spout. 

So, Aidan, what do you think??

Attempt 2: This one is different! People say it's great!  Give it a try!!!

And???

Sigh.  Attempt #3. It's a straw.  Aren't straws the best?

 OMG he drank a sip of water from it.  Want to try formula in the straw cup, buddy!?

Well, he drank a sip of water.  That's almost like success.  Time to beef up the fleet...

Isn't this exciting?  They're green! Who doesn't love green!?!?!?

Okay, so maybe it's not the greatest straw cup ever.  But there are others!!  Let's try others!!!!!

Verdict?

I give up.  You win.  Take the bottle to college.

Oh what a year...

One year ago, I was blissfully snoozing the night away on morphine and an epidural.  I had *no idea* what was in store for me over the next 365 days.  People love to ask if parenthood is what you expected - it's everything I expected  and so much more, and at the same time, it's like nothing I'd ever imagined.

It certainly hasn't been the year we planned. 

We started off with this thing.  And those fools at Lankenau let us take it home.

It got bigger, and louder, and (yikes) smarter.  Six months later, we found ourselves with one of these, and still, nobody took it away.

Six more months went by.  And it got hard.  I won't sugar coat it.  It got insanely, discouragingly, terrifyingly hard.  Sick baby, new job, sicker baby, new friends, baby still sick, new vocabulary (half of my emails on any given day are tagged "eosinophilogastro"), a whole new normal.  We can't actually even fathom what we did with our time minus Mr. Baby.  Now, when he's not around, we shop for him, talk about him, clean up after him, and debate the finer points of sleep - who needs it more, who deserves it more, and why nobody's getting any.

I said I wouldn't sugar coat it, so I won't lie - this year has been tough.  We have a failure to thrive baby, which means that at any given moment, either of us can tell you exactly how many ounces our child has ingested for the day (20.5) and how far from target he is (34.5.  No, I'm not joking.).  Most of our waking time is spent begging him to eat, tricking him into eating, wondering if he'll eat, and doing quick ounces-to-calories conversions to classify the day's failure (epic failure? major failure? kinda-sorta failure?  Today would be the major failure kind of day, but really, who's counting? Ha. Silly rhetorical question. Obviously, we are.)

This year, and more specifically the past six months, have seen us seeking out every doctor in our pediatrician's practice, an allergist, a GI specialist, and a chiropractor.  We've also been to three labs for bloodwork, had two ER visits (seizure, bronchiolitis), and one hospital admission (aforementioned bronchiolitis).  Plus, of course, two occupational therapists, two audiologists, and countless run-ins with urgent care and pharmacists.

The past two weeks have brought us to a saner (if not actually "better") place.  We have the right doctors, they've done the right tests, and we finally know what is "wrong."  So begins the process of making life normal again (with a quick detour to merriam-webster, where we will clearly need to redefine "normal" as it pertains to the Shields household). 

The upshot to all of this is that we've made amazing friends who understand us when they can and love us even when they can't.  We've found childcare providers that take our son's safety and happiness to heart and would do anything for him.  I have a new job with employers and colleagues who are more understanding and supportive than I have any right to hope for.  Our little family is making it because of all the friends, family members, and total strangers who care enough to help.

And that's all the small stuff.  The big stuff - the really, really big stuff - is that we have THIS GUY.  He walks, he talks, and he laughs like he doesn't have a care in the world.  He's our screecher creature, our buggybear, and our silly little monkey. 

I put my infant to bed tonight for the last time.  Tomorrow, I'll wake up to a toddler.  I hope he still laughs when I fake-sneeze...

Words not required.