2 Steps Forward, 10 Steps Back

I just don't have the top ten in me today.  This week has been awesome and lousy.

AWESOME in that Luke "sortof" graduated from physical therapy.  He's walking, squatting and pushing himself to stand on his own, without help from another person or object.  We head to the pediatric orthopedist next week and find out a verdict on leg hardware.  We are putting his PT on hold because of the "lousy" below.

AWESOME in that last night I was able to briefly share Luke's story and the amazing impact Hand to Hold has had on our family to a crowd of about 125 people, all directly affected by prematurity or infant loss.  It was humbling and empowering to be among a group of so many fine people.  And, after our setbacks this week, I found I really needed to be in the company of people who understood our struggles, because we all have them.

AWESOME in that I got to take homemade snickerdoodles up to Will's class on Monday and sing "Happy Birthday" to him, along with his classmates.  When they found out I brought my famous cookies, they all cheered and Will even gave me a hug.  In front of his friends, no less.

AWESOME in that we do NOT owe the government money this year!

But all those awesome's don't make up for this one lousy.

LOUSY in that Luke has officially given up all food.  Every last stinking bite.  No table food, no goldfish, no yogurt, nada.  Zip.  Zilch.  The only thing he's "eating" is his supplement and probiotics, which he's drinking.  Everytime we try giving him something to eat, if in fact he does actually put it in his mouth, he throws it right back up.  I'm not talking a little gag and spitting it out.  Nope.  This is full blown, all over himself, the highchair and out his nose kind of mess.  Just two days ago, he's started gagging just at the sight of food.

It pretty much sucks.

Our state-funded therapist is good, she just can't come out to the house often enough.  Four times a month isn't going to cut it anymore.  As fate would have it, we were at physical therapy on Tuesday morning when I shared our latest struggles with eating.  Folks, I have been crying at every meal.  Every one.  It is excruciating and I hate every minute of seeing Luke struggle.  So, when the therapists deemed our situation "emergent" I teared up right then and there.  They called the occupational therapist (OT) who is a super fine Aggie and she rearranged some patients so Luke could be evaluated this morning.

It was empowering and eye-opening and disheartening, all in the same breath.  Empowering because I finally feel like I have someone who can really help us.  Ms. Lori is my new hero.  Luke's first official appointment is this Friday.  Let the bi-weekly therapies begin.  Again.  Eye-opening to read about where we are and where we need to be.  We have some serious work to do.  Disheartening because I am kicking myself wishing I had never given Luke that damn Tamiflu a few weeks ago.  That marked our serious decline and it's been rapid ever since.  He has some serious oral aversions and sensory issues.

I know.  I know.  I can't live in the world of "what if's".  This IS our reality.  Now I know better and will probably be unwilling to give Luke any medication unless it's life threatening.  His belly and antibiotics just don't jive.

So...we're still throwing up at every meal, but I am leaning into that reality and starting to accept it.  Mealtimes are going to be messy.  It's a good thing we gave up eating out for Lent, because we won't be doing it for a long time :) 

Pray for us.  This is going to be a long road.