It’s crazy to think about how much has changed… and the things that haven’t since those 10 days we spent in the hospital with Aspen last year.
In some ways, we have come so unbelievably far.
Our little turkey leg is nearly 18 months now and she’s eating. And eating. And eating some more. She also has begun walking, which I mean, picture our turkey leg tottering around... It's freakin’ adorable.
Other progress? My insanity. Well, the lessening of it, I should say. These days it's holding rather pleasantly at a mere soft simmer. Nothing like the full blown boil which I operated at during our time leading up to Levine’s and for the many months following.
As for answers? At present, we’re still left with nothing.
Which is slightly unbelievable considering how much this monkey has undergone in trying to understand the reason for her continued growth failure.
“Failure”. Ugh. Fucking hate that word. Still. Including its never-ending implications for both her and myself.
Her failure to thrive diagnosis continues to follow us into every appointment and my desire to burn shit down because of it then follows me as well. So hmm… yeah, I guess that’s another thing that hasn’t really shifted.
In best change news, we’ve made the huge push to further limit feedings through her g-tube. Ultimately, really trying to only utilize it when she gets sick. This comes at the slight dismay of some on her medical team, who continue to feel that more needs to be pumped in to increase her progress. It’s recently been suggested that continuous overnight tube feedings also resume.
That definitely kicks my stove setting up to a nice bubble.
While I would like to see her move beyond the 15lb mark that she has ridden for months now, I also am not convinced that returning to scheduled tube feedings is the road we ever want to return to. I mean, unless absolutely necessary, of course.
For me, it’s as though we’d be taking steps back to try to take steps forward.
They often keep referencing “catch-up” weight goals for which I think, at this point, do we even know what we are trying to “catch up” for?
Sure, would it feel like a big milestone to touch that bottom line on the growth chart at some point? In either height or weight? I guess.
Do I worry what her life will look like if she never grows the way she should? Of course.
But is this simply who she is and something we’ll have to accept and navigate always? Yes, potentially.
Most importantly, I want her to be healthy. And strong. And I want her to keep reaching for the developmental milestones that she works so hard at hitting.
I also want her to feel in control of how she eats, when she eats, what she eats, how much she eats…
The many, many months of taking that away from her were gut-wrenching. And the copious (and I mean, copious) amount of vomit and tears that we dealt with because of it still haunts me.
It is exhausting to continue to hear differing opinions, thoughts and speculation on what is "wrong" with her.
So rather than ever give too much attention to the challenges that still lie ahead, we’ll keep our eyes focused on this chicken nugget right here, who is on the verge of true toddlerhood.
Cheese-filled, tottering, loving toddlerhood where in many ways, she feels bigger than ever.
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