The pump came out again today. After several months-we think possibly a couple years -the pump was back in action today.


G hasn’t been feeling great the last few days. Between summer allergies and lots of activity at camp, he has been worn out and not interested in eating. This morning he exhausted, he didn’t even want to lift his head to sip water.  

I immediately flashed back to the times that a morning like this landed would have landed us in the hospital for a couple nights. Not today….we are now road tested parents. We knew the drill….gotta get him hydrated then go from there. 

After a couple failed attempts to get him to sip some water,Chuck and I went to work finding all the pieces and getting the pump reassembled. It was bizarre how quickly we jumped right back into our routine of prepping things.

It’s several hours later now-G woke up hydrated , joking and scarfing down toast.

As I find myself reflecting on the events of the day, the word PERSPECTIVE keeps coming to mind. Today, I was fairly calm, clear-headed and able to take care of his needs.

There were many times that was not the case-including the hospital stay that led to us getting the G-tube to help with feeding and hydration. That day I was freaked out, scared and had no intention what-so-ever of letting anyone perform a surgery on my child to make it easier to hook up a machine and pump food into his body!

At the time getting the G-tube seemed a giant step backward. We had finally stopped the seizures. Now all of these other health issues were popping up-the cascade of lasting issues and side effects felt relentless. I am thankful for all the amazing medical professionals who walked us through the why’s and how’s and that we ultimately took a leap of faith. Having the G-tube to give medication, nutrition and hydration has been AMAZING in helping keep our boy strong and healthy.

I am so glad my perspective changed. The situation was the same……sick kid unable to drink needs hydrated. I am the one who has changed. Today I was able to see the blessing in this device and our experiences because we were able to handle it with ease. (Not normal….don’t think I’ll ever feel comfortable calling our lives “normal” again….but we’ve got our routines that we can slide in and out of when needed).