Even though we are on vacation, our Little Butterfly never truly gets a day off.
It was cool on the lake this morning and we had two very special butterflies to pick up in Erie so we headed into Perry Square and did just that. The two butterflies were part of the annual Wings of Hope Butterfly Release, a benefit to raise money for hospice. This is the second year we’ve picked up two butterflies in memory of Michael’s maternal grandmother, Mary Staebler. We took the butterflies to Michael’s mother’s house and released them just as we did last year. It was a beautiful thing.
Meanwhile, our Little Butterfly has things to do and Sensory issues to conquer. After she and her father spent a while in the hot tub, it was off to a department store to pick up a booster seat for Keti. For two nights in a row, Keti has not had a proper breakfast or dinner. We’ve supplemented her meals with pouches and Pediasure: totally not ideal.
This afternoon we scored a totally cool Elmo booster seat that we can travel with in the future. Around sunset, it was time to work. First we had to do some proprioceptive input, basically deep pressure joint compression and then some massage with lotion. Then it was up to the booster seat where the real work lay ahead. We had apple sauce and graham crackers tonight. She’s good on the apple sauce, it’s the graham crackers that freak her out. Her father crushed them up into the tiniest crumbles and put them on a plate for me. Miss Smarty Pants sees them on the plate and starts refusing the apple sauce. I sing to her and finally get her to take another bite and praise her as though she’d just won a Pulitzer Prize. I take the plate and dump half of the crumbs onto her little Elmo table and she immediately starts touching them. That’s a good thing! I dip the spoon into the apple sauce and then the bottom of the spoon in the graham cracker crumbs then say, “Take a bite!” She takes a bite. Half of it comes out. I still tell her, “Good bite.” I scoop up what came out and say, “Take a bite!” She takes a bite, swallows and I praise her again as though she just won the Pulitzer.
This is our life with a child who has Sensory Processing Disorder and Dyspraxia. There is nothing easy about feeding Keti. For the first 12 months of her life she was borderline Failure to Thrive, which is a very serious matter that could’ve necessitated a feeding tube. I’ve had friends and relatives tell me, “Well, if you just starved for a few days, she’d be hungry enough to eat whatever you put in front of her.” I wish it were that simple. I would’ve starved the kid out long ago if it had been. But she would starve before she would eat a graham cracker or a cheerio or rice pudding or a chicken nugget. The Dyspraxia inhibits her ability to process food and the Sensory Processing Disorder inhibits her ability to tolerate texture. It’s a wicked combination.
So, even when we’re on vacation, our Little Butterfly works. And we work with her and for her because she is so worth it. We are so very fortunate to have a new Occupational Therapist who is working with Keti on her feeding issues. She has been with her just over a month and already we’ve seen terrific strides. Here’s to many textured foods in her future!