This is also a way to journal how he eats right now presently in his life...our prayer is that he will chow down on waffles like the rest of us, but until he has that ability, we are so thankful for his feeding pump, which can be unattached from the pole and brought with him everywhere, it has a ice pack tucked inside it to keep it cool and fresh...I call it his "friend".... :)
Here is a picture of everything Ezzy eats all day long.
Here is a picture of his morning nutrients and vitamins added to his PediaSure formula.
Here I am priming his feeding pump, which means getting it ready :) Doesn't he look ready to eat?
Here I am opening a new syringe, (love new ones :)I get new syringes, feeding tube,and new feeding bags once a month) to draw out his morning medicines. He gets the same ones at night too.
Giving him his meds.
Feeding pump going, dry diaper, all tucked in, music on...ready to rest and eat while the loud crazy kids are eating in the kitchen :) He joins us during meals, but for breakfast, we keep it low key for him...until little brother starts climbing up his railings to visit him...Owen is still too short, but sure does try :) I find the girls in there with him, reading to him and re-arranging his bed...Ellie tells me, so there is more room :)
8 comments:
Thanks for the step-by-step. All of these details are giving me more and more ways to pray for you all more effectively, I think!
We love you in the Lord!
I just stopped by to check on Ezzy. I almost cried with him while watching the video of him crying.
I remember the days of the feeding tube. Can't say I miss it. We are still feeding izzy pureed foods, but are praying she eats with us someday soon.
Hi,
I found this blog through a comment you left on my friend Angie's blog (saying that you know my friend Joy, also!). I was interested in your posts because just a couple of months ago we removed my son Isaac's mickey for good! He had it for 3 years, and a nasogastric feeding tube before that. Isaac was born at 26 weeks and has always been underweight. I'll pray with my kids today about your precious Ezra, that he CAN someday sit at the kitchen table and eat waffles with his siblings. :) Blessings!!
Hello Liz,
Sounds familiar...I'm not sure why? :) Elijah sends Ezra a hug. I know it can be complicated and a lot to remember each day, but I love your attitude and thankful heart for all your blessings. We ARE blessed! Love you. - Julie
During high school I took care of a girl with severe cerebral palsy. This whole post was like a blast from the past. One of her favorite things to do was to make herself laugh during a feeding. Her stomach muscles would tighten and the food wouldn't go down. Knowing she had control over the situation just cracked her up and she'd laugh more, thus starting a vicious cycle of laughter and prolonged feedings. Little stinker. :)
And to think I complain about having to prepare meals for my family - meals they ALL get to enjoy. I think I need an attitude adjustment, and once again, God, You've used Ezzy to do just that!!
How are you doing?
Just stopped by to see how things were going for Ezzy. Oh Congrats on the new member.
Http://littlehandbigheart.com
Tricia Gardner
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