Backpack Boy” crawling around our house. We do not.
We did the week trial of Nathan wearing a feeding pump continuously during his waking hours. We discovered that it only made his reflux worse. Way worse. However, it did stop his episodes of unconsciousness. Best we can figure, the unconsciousness and tachycardia were triggered by overfeeding him. Neurological tests came back fine. Cardiac tests came back fine. Therefore, I think overfeeding must trigger a vagus nerve response causing him to pass out.
We’ve adjusted his feeds to lower volume, more frequently throughout the day. It’s hard to get the calories in him because he’s still napping, but like with anything with this kid, we figure it out.
That has become my mantra lately. My determined stance toward things that are unusual or hard. More than that it’s become my marching order on some days. We figure it out.
There are still so many unknowns of what the future holds. So many fears about recurring or new occurring medical complications. So many questions about what challenges will come with Nathan going to school, hitting puberty, and even when brother goes to college and we get older. I read about other kids with Nathan’s syndrome and I wonder if we’ll face the same sleeping issues, behavior issues, and sensory problems. Here’s the thing though. All of this wondering is really worrying and it can make me sick.
Three years in and we’ve done a lot of “figuring it out.” All of this figuring, factors in the divine role and work of God in our lives. Figuring it out means praying like there’s no other option (because often there really isn’t). Trusting there will be an option just in the nick of time. Knowing in the hard moments, days, months we are not alone. God has provided for us in some unique and unexpected ways. In more beautiful and amazing ways that all my wondering could have ever imagined.
So together as a family who has a Heavenly Father with a providential plan and provision, we will figure it out.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!