You are THREE!

My Sweet Little Boy is THREE!

I'm almost certain it was only a few days ago that he was born.  I just found this comparison shot of Aidan on the day I brought him home from the hospital, and then 11 weeks later.  How did either one of those Baby Bears turn into the little meatball rolling around my living room today?

A visit to Nutrition yesterday told us that he is up to 27lb 5oz (8th Percentile!) and 34 1/4 inches (1.5 Percentile).  He is still completely tube fed, "eating" 1215ml of Elecare Jr every day.  We feed at 65ml/hr and I still feel wholeheartedly that Tube Feeding is the greatest thing we have going.

Aidan started Preschool in December in Miss Kristy's class and he's doing AMAZING.  He does a great job with his alphabet and is working hard on his numbers.  He loves his new teacher and is learning to share and play with his new classmates.

He's transitioned out of Early Intervention and we've had to say some difficult goodbyes to Miss Amy, Miss Kati, and Miss Noreen.  While we wait for our new IU team to fall into place, we have added another wing of support from Wraparound.  Miss Heather and Miss Jamie have joined us every week, and Miss Taylor will be starting next week.

Aidan adores his best friend Teddy - Teddy helps him to be brave and try new things.  Teddy is like a brother to him, and I can't wait to see what Aidan thinks of Teddy's new baby brother in a couple of weeks.  We never would have gotten Aidan into a Halloween Costume this year without Teddy!

Aidan still LOOOOOOVES Blue's Clues, but has expanded his little world this year to include The Bubble Guppies.  This Christmas, he asked for Pink Guppies Jammies....

He especially likes Molly

I mean Gil.  Yeah... Gil...

The past year has been a medical and emotional rollercoaster - three CHOP admissions.  Even more ER visits.  Allergy Testing.  A Scope.  Several visits to his new Developmental Pediatrician, leading up to a diagnosis of Autism Spectrum Disorder. New therapies.  New therapists.  New friends.  So many appointments.

But I wouldn't change a moment of it - I truly believe that it's all leading us to better times.  Here's to hoping that 3 is the year of those better times.  We love you, Little Bear.  Have the Happiest of Birthdays.

A New Year's Promise to A Really Good Mom

In honor of the New Year, I have a secret to tell you.  Actually, it's a secret that I'd really like to tell me. 

I'm a good mom.

There, I said it.  It's amazing how hard that is to say - and not just for me.  The number of really good moms who can't find it in their souls to believe they're working tiny (and not so tiny) miracles for their kids every day is really heartbreaking.

But I'm a good mom.  I can't make this stuff up, either.  I have evidence.

Exhibit A - My own mom.  She's the best mom in the world.  She taught me everything I know about how to be everything I am - a daughter, a friend, a confidante, a human being, and a mom.  If I'm half the mom she is - I'm a darn good mom.  I hope my son grows up and thanks her - he really lucked out.  If not for her, his mom would have no clue what she was doing.

Exhibit B - The Man.  By which I mean The State of Pennsylvania, which I see as a sort of octopus, whose tentacle-y arms reach into our home and our lives every week by way of Early Interventionists.  (I wonder if I could teach Aidan to call all of his therapists Calamari.)  Do you know how easy it is to doubt yourself when a herd of mandated reporters is on their way, and you've fed your child nothing but a diet coke today, and he's decided it's funny to greet everyone he sees with "I still poop!" (he didn't) as though he'd been wallowing in filth for hours (he hadn't), and of course he only wants to play with that one toy Daryl (who's holding a zombie-killing crossbow), and he slips and falls for the first time ever down the stairs that aren't gated off while said mandated neglect/abuse reporters are watching - in short, you start to wonder how no one has snatched your child away already.  But seriously.  Stop it.  I'm a good mom, The Calamari said so.

So here I am - a darn good mom - with all of this proof.  Am I going somewhere with this?  I am.

What I've come to realize is that moms - REALLY GOOD MOMS - are turning to other REALLY GOOD MOMS for advice and interaction - and somehow coming away with less than they brought to the table!  How does this happen?!

It's those other moms.  I swear, it's them!  And also the internets!


You would think that surrounding yourself with a gaggle of culturally and ethnically diverse moms, spread across the continent, would be really great way to learn what others are doing and gain some insight on new things to try.  What ends up happening far too often though, is this:

Really Good Mom A: My daughter can count to fourteen thousand!
Really Good Mom B: My son knows all of his letters!
Really Good Mom C: My kids are reciting poetry!

Maybe I'm exaggerating, but bear with me.  All of these are fabulous accomplishments - until Mom A starts wondering why her daughter doesn't know any poetry, Mom B chastises herself for wasting all of her time on letters and not working on numbers, and Mom C berates herself for missing the boat on letters AND numbers while skipping right on ahead to poetry.  Nobody's proud anymore.  Everyone just feels like they're behind.  Add in Really Good Mom D who just finished nine Pinterest projects this morning, and everyone really feels like a failure.  Stop it.  You're all Really Good Moms. (Except you, Pinterest Mom.  Ain't nobody got time for that!)

Let's go a step further.  I'll be Really Good Mom Z.  My son can count to two, he knows - well - some letters.  Speech isn't his forte - so poetry's out.  And I don't even have a Pinterest account.  I'm still a Really Good Mom.  It can be a little tough to remember sometimes - but it's true.

And when all of these Really Good Moms start doubting themselves, they start doubting everything.  And I mean everything.  How do I know what size underwear to buy my daughter?  How do I pick out a carseat?  What do I feed my toddler?  Help!! I don't know what to buy him for Christmas!!"  In the days before the internet, people solved these conundrums solo.  Really.  I promise.

I'm as guilty as any mom out there.  I don't really do New Year's Resolutions - but this one is worth it.  I'm a Really Good Mom.  I've gotten him this far.  I know how to do this.  I've got this.  This year, I'll start believing it.  I hope you do too.

Plans, Plans, Plans - Scope Scheduled!

I promised to write again, before Aidan wound up in the hospital, and here I am!

We saw GI last week, and talked through what Aidan's been going through for the last few months.  All of the pain, the vomiting, the misery, the hospitalizations - EGID families, you know what I'm talking about.  Dr. L actually agreed that something is clearly amiss here.  CHOP has been admitting him, patching him up, and then discharging him with vague comments about "constipation" and "needing to be proactive" - but without any answers.  A year ago, when Aidan completely stopped tolerating his feeds - CHOP placed a GJ tube and called it a day.  No one ever really dug into why or what we should do about it. 

It was last Winter that all of the trouble really started - and it wasn't until March that we finally got any action out of CHOP.  A Gastric Emptying Study was done , and called normal, although he vomited the contents of the world up throughout the test (who decides this is normal???).

Because the study was normal, we decided to move ahead with the change of the G Tube to a GJ tube.  It was the right call, and I'm really thankful that we did it - but in retrospect, I wish I had pushed harder at the time to find out what was actually wrong.  Subsequent visits to the hospital never really got us any of necessary urgency around this problem - so ultimately, no one ever cared enough about this again to take another look.

Dr L says that he cares now.  He's ordered a full scope - upper and lower - with a simultaneously coordinately GJ button change.  He was last scoped in May, and there were "some" eosinophils but nothing "too troubling" (I hate this verbiage.  It makes me think no one counted.).  But something is not right in his poor little body.  I don't know what will come out of this scope, but I hope that we'll come to a new direction of some sort. 

On the food trial front, we've been working on strawberry for about two months now.  I use the phrase "working on" really carefully here - please note that I did not say "trialing" or "eating" - I said "working on".  After two months of work with three different therapists, Aidan will now semi-willingly lick slices or chunks of fresh or freeze-dried strawberry.  He will also lick the spout of a refillable squeeze pouch, but only if he cannot see any sign of red anywhere near it.  During these past two months, one therapist in particular has gotten Aidan to actually swallow a bite or two of strawberry a handful of times.  This is always (and I do mean always.  I reviewed my food journal this weekend, and it was depressing.) followed by 1-3 days of diarrhea and a hive-like and sometimes bleeding diaper rash.  Tom and I have successfully gotten Aidan to swallow bites of strawberries zero times, so I have nothing further to add there.

Nutrition and GI advise that this isn't enough to consider an actual trial, but it's something to be kept in the back of our minds as we scope him.  I'm almost tempted to puree some strawberries and tube them in prior to the scope, but with my luck, I'd clog the tube and he'd wind up in the hospital on Christmas Day, or something equally absurd.  So I'll keep my strawberries to myself.

CHOP scheduling actually called me on Friday morning to schedule - for December 23rd. Um, no.  I'm not doing that.  I'm not having a very CHOPpy Christmas, thank you very much.  What's your next available? 

So January 6th is the big day.  It's hard to believe that's really only 3 weeks away.  Which means his birthday is even closer than that.  The big oh-three.

I do have more to talk about - tomorrow is my first IEP meeting for Aidan - it's been a LONG few months of evaluations, new diagnoses, different service levels, new providers, and sleepless nights while we worry that we're not doing the right thing.  Hopefully it's all paying off.  Aidan started preschool two weeks ago and he's doing really, really well.