Emptying the purple backpack I find a note that the drink we usually send in didn’t make it to class today. They filled her cup with water but wanted to make sure that was ok. A month earlier there had been a similar note regarding the therapeutic straw we send in. It doesn’t happen often but a few times a year our fail-safe plans to keep the Quail from aspirating on thin liquids goes haywire in the morning circus of our weekdays. Grinning I go to the computer to reply to her teacher with our apologies and assurances that what they did was fine.
Once upon a time, it wouldn’t have been. Once upon a time there were frantic phone calls to my cell phone as I continued the morning commute into work and the need to pull over and sort through my options for getting the appropriate drink, cup or straw to the Quail before she finished her morning snack. If Lovey didn’t answer the phone when I called to see if he was at a breaking point in his schedule, I’d start to turn the car around until he called back.
For the most part the Quail has lived a typical life in a typical setting. The little supports that go into keeping her life typical though- they have been manufactured and adjusted regularly as she’s grown. Every six months her early interventionist will review an assessment to see how she’s developing and what concerns we have and what goals we want to focus on for the upcoming set of months. This miracle worker of ours has guided us from the time the Quail was eight weeks old on up until now, taking the activities that we were blessed to be able to take for granted with Zuzu and measuring them out to the Quail in simpler steps that can be linked together so that months from the onset of a goal she can breeze through an activity alongside her sisters and friends making her efforts look easy-peasy to quote Zuzu. Most of these activities though, were not a matter of her health or safety.
Only the thin liquids were that.
When she was 14 months old we discovered a two-fold cause of her repeated, daily throw-ups- a duodenal stenosis, that could be easily corrected through a surgical removal of the membranous webbing the next month, and a series of swallowing issues that amounted to a neurogenic swallowing disorder that would take years to correct if at all. Every few months we would take her back to a speech therapist for a new swallow study to see if she was doing any better and might be able to drink regular thin liquids. Every other time she alternated improvement with worsening. The therapist finally explained that with every growth spurt, it was like she was gaining a new set of equipment and would have to relearn how to coordinate and control her swallow to prevent the liquids from going into her lungs and making her sick. We could compensate for this by thickening all liquids and only allowing her to drink from a straw-cup.
This past summer though the result of the follow up testing showed that she was controlling all liquids- meaning she could now drink plain, old, regular water, milk or juice. We still needed it to be chilled and drunk through a straw to assist in her controlling where it went, but she could control it with those supports.
This. Was. Huge.
This meant when the Quail went off to big-kid school this fall, she was no longer at risk of accidentally aspirating if unbeknownst to us, a substitute teacher, therapist or staff member filled in with her snacks and meals. It’s one thing to reiterate to a small staff in a private daycare what they need to do to keep your kid safe from something as innocuous as water, another thing entirely to be sending her off to an elementary school with a population of approximately 800 students.
Just as I hit send on the email to the teacher the Quail comes running back into the office with her strawcup in hand:
“Momma. Keeee—fir. Me. Drink.”
I reach down to take the cup from her. “Absolutely. Did you have a good day at school?”
“Yeah. Play. Eat. Silly!” She waggles her hands in the sign for silly as she laughs and dances her way to the fridge to pull her beloved kefir out. Easy-peasy.