Feeding Myles

Feeding Myles is...... an adventure. An always changing new adventure. Sometimes he doesn't mind, sometimes he hates it, sometimes he tries to help, sometimes he tells me to feed his button, sometimes he makes silly faces, sometimes he tells me he's going to puke, and sometimes he does puke. Get the idea?! Always an adventure!


This is a bolus gravity feed. Basically, after mixing his special formula, I hook up his extension set to his button in his tummy. That gets hooked up to a 60 ml open ended sryringe. I slowly let the formula run through into his tummy.


He "eats" about 9 oz at a time and it took a VERY LONG TIME to work up to 9 oz! He's a happy boy for tonight's feeding. He won't ever drink it. YES, we've tried.


This boy has been through so much and still amazes me. He's brave and tough and loving.


Presently, he thinks his button is his super power. I want him to always be happy with who he is. He's ok with showing it to people still. We treat it like its totally normal or special. If we react to it not being normal that's when he'll think he's not normal. Every one has their differences and that is ok! 

What do I think? I think he has two belly buttons. One that gave him life and one that saved his life.

Comments

Post a Comment

Popular posts from this blog

Follow Your Promptings!

Image
  Sunday, May 2, 2021   During fast and testimony meeting today (anyone is invited to share their testimony with the congregation, if they want, in this once-a-month meeting) I felt the pull to get up and share my testimony. It was strong enough to get me to jump out of my seat, yet I did not jump out of my seat. Each passing minute, each passing testimony, I was burning to get up, but I did not. This morning before church, I listened to a fantastic talk about promptings and acting on those first promptings! I listened to how the speaker explained that the adversary is usually the second thought and tries to use logic to talk us out of acting on that first prompting. I agreed and understood! Yet only a couple hours later, I was sitting in sacrament meeting justifying the first prompting to go up and share my testimony. Some of my “second thoughts” included, “But I’m pregnant and nervous and if I get up, I might pee my pants (dress)!” And, “I have so much I want to say that I’m
Read more

Be Brave Mom

Image
  Monday, January 25, 2021- The weight of my blankets only made me want to stay in bed longer. I'm not a morning person regardless of not wanting to face Myles' doctor appointment. Myles decided he wanted to wear his super Mario brother hat from Halloween. Sure, why not?! When we arrived at the waiting room for the clinics in Primary Children's Hospital, I was taken back by the emptiness. The hospital, dedicated to the care of children, always has plenty to do and multiple options in the waiting room. We were once there for a swallow study and someone had the sole job to blow bubbles and play games to distract Myles and keep him happy during his testing. Anyways, thank you covid for destroying the fun for sick and sometimes scared kids waiting to be seen. 😓   We actually didn't have to wait long. The nurse took us back to the room they weigh and measure kids in. When I walked in memories flooded my mind of all the different times I've been in that room with Myl
Read more

You are Not Forgotten! Don't Give Up!

Image
Saying good bye to our first house. Sometimes when you meet people and start talking to them, you get that feeling that you just get each other. You click! Last week, at Wylie's last soccer game, a woman on the sidelines watched me arrive at the game with my bunch of kids plus a couple extra. I probably looked like a frazzled mess because we were running late and I'm hauling all these kids around while hugely pregnant. It's a good look...just saying. After we settled down on the sidelines she came up to me and asked me if this would be baby number 7 or 8. I explained it was 7 but some of the kids with me at that moment weren't mine. She smiled with understanding and told me she had 8 kids. Keep Trying! We continued to talk for a while about coming from big families, raising big families, getting counted in public, transitioning to a 12 passenger van, and all the funny and rude things that come with carting around a million kids. Then she mentioned th
Read more