Monthly Archives: July 2019

Perspective

07 Sunday Jul 2019

Posted by Amy in Uncategorized

≈ Leave a Comment

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).

♣ Subscribe to FIO

♣ Helpful Websites

  • Charlie Foundation
  • Danny Did Foundation
  • Doose Syndrome
  • Keto Cook

♣ Recent Posts

  • Perspective
  • Back to Blogging: I’m here to Call Back!
  • Celebrating Successes
  • “The Eagle Has Landed”?
  • So far…so GOOD!

♣ Recent Comments

  • Cheryl Roberts on Celebrating Successes
  • Amy on Starting the Descent—Weaning Felbamate
  • carole Sandels on Starting the Descent—Weaning Felbamate
  • Suzanne on “The Eagle Has Landed”?
  • Sarah Mackay on So far…so GOOD!

♣ Archives

  • July 2019
  • June 2019
  • May 2017
  • November 2016
  • October 2016
  • June 2016
  • February 2016
  • January 2016
  • December 2015
  • November 2015
  • July 2015
  • June 2015
  • February 2015
  • December 2014
  • November 2014
  • October 2014
  • September 2014
  • July 2014
  • June 2014
  • May 2014
  • March 2014
  • February 2014
  • January 2014
  • December 2013
  • November 2013
  • October 2013
  • September 2013
  • August 2013
  • July 2013
  • June 2013
  • May 2013
  • April 2013
  • March 2013
  • February 2013
  • January 2013
  • December 2012
  • November 2012
  • October 2012
  • September 2012
  • August 2012
  • July 2012
  • June 2012
  • May 2012
  • April 2012
  • March 2012

♣ Categories

  • Doose Syndrome
  • Family
  • Gabriel
  • How to help
  • Ketogentic Diet
  • Uncategorized

Proudly powered by WordPress Theme: Chateau by Ignacio Ricci.