There is true power in hope. Hope allows people to understand than while things may not be perfect (or even good) right now, that they will get better. Hope reduces stress and increases resiliency.

On Wednesday of this week, I felt hopeless. I was watching my little Connor slowly lose weight, yet still refuse to eat no matter what we tried. It seem like everytime we tried something new, it failed. I was a mental wreck and down in the dumps emotionally. We admitted him to the hospital (again) to figure out what was wrong.

Flash forward to Friday morning. I feel hopeful. We are home from the hospital as of last night and we have a plan! The plan makes sense to me and we will execute it. Connor will gain weight and will get back to being that happy, healthy boy that we have come to know and love. (It also helps that I got a full night’s sleep for the first time in a long time on Wednesday night - never under estimate the power of a good night’s sleep).

The key test we did this time was a swallow study. Connor ate some barium-laced solution and the doctors watch how the fluids move inside his body as he swallows using a live X-ray feed. This showed that with our current bottles, he was getting the fluids too quickly and some of the fluid was pooling on top of the check valve going into his airway. This makes him cough, gag, and generally feel like he’s drowning. Given those sensations when eating, he learned to eat the absolute minimum to get by. That’s why he’s not eating enough to grow.

So the planned solution is to dial back on the bottle flow rate to something he can control better and (the ‘fun’ part) to have an NG tube that will allow dad and daddy to send formula calories directly to his belly overnight, bypassing his normal swallowing path, to allow him to grow while he figures out that eating isn’t going to hurt him anymore. You can see this beautiful new accessory in the pictures below. Jake says he has to be an elephant for halloween now.

Last night was our first try and it went “okay”. First, I sat down to feed him and spilled the bottle all over the chair I was sitting on. Then after refilling and feeding him, Connor decided to spit lots of it back up so i got to change sheets and do laundry at 4am. But…even given those set backs, we got some calories into this child! Grow, Connor! Grow!

Unfortunately for us, the radiation during the swallow test did not turn him into Spider Man as far as we can tell.