Otto’s feeding update almost there!


February 18, 2020

It’s been a while since we had a check in for Otto’s feeding schedule and I was elated when I sent in his current progress and they wanted to see him right away. We have been slowly cutting back about 10-15% of the g-tube fed volume each time and yesterday was the first time we were able to cut back by a great amount.

Currently he gets three tube feeds during the day (morning, noon and dinner) each after he eats orally. At night he gets a larger volume to make up for any potential lost calories. I was so bummed he got sick before this appointment because he didn’t want to eat while he was down which caused him to lose a little weight.  Regardless they were still happy with his progress and we did one of the greatest cut backs we’ve ever done.

Otto is to the point where again he knows we are in the doctors office and gets very upset and unsure of the situations at hand. We did our best to get an accurate height and weight before just having a consultation. It took a lot of convincing but he finally calmed down enough to tell the dietician how he “doesn’t like it” and is “ready to go, Mama get my things”. drama drama drama.

Hunter Toddler Boots

In a few days when Otto is feeling 100% we are going to cut back from 3 to 1 during the day and maintain the night feed. When we have our cardiologist appointment next month we are going to get a good weight and see if we have to go back up or continue to cut back.

I’m not going to lie, this is super scary and exciting all at the same time. To think that we could be approaching the end of our feeding tube journey blows my mind. It’s been almost three years of measuring weights, formulas and changing out tubes and buttons not to mention a few trips to the ER when we were getting the hang of it.

It’s been a slow and patience testing process but I’ve never been so proud of my little man. He proves time and time again that things will happen when he is ready and in his time. If I could go back in time I would tell myself at the start of this journey to BE PATIENT things will come. Read more about Otto’s food aversion here.

I know we are not out of the woods yet but we sure are seeing glimpses of the other side. Thank you so much for all of the thoughts, prayers and encouragement friends. It means the world.

Toddler Boy on a Log Raising a little Farm Boy Raising a little Farm Boy Muddy Puddle Boots Otto standing on a large log on the farm Toddler Otto on a large Log Otto on the Farm Toddlers on the Farm Toddler Otto on a large Log Raising a Toddler Farm Boy

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  1. Deb Delo says:

    Your such a good mom and dad! All your hard work, prayers and loving sure show up with that adorable little Otto! God gives us strength amongst the trials! Trials teach us so much about love and life! I always say It’s a journey!

  2. Laura McDaniel says:

    Wonderful news <3

  3. Kirsten says:

    He’s doing so well, Mama – you guys have this!! I have to say I was pretty impressed at you and Joe changing Otto’s gizmo – eeeep! You got so many ideas for getting more real food in his mouth, too! I was pretty lucky and didn’t have picky toddlers. Although we did call my daughter Condiment Girl when she had to dip everything and lick and lick and rarely take a bite. And I always used the “you’re 3 years old so you have to take 3 more bites before you’re done” if they hadn’t eaten enough and just wanted to go play or whatever. That trick worked well for years! Finally, about 12 years old they called me out….kidding

Abigail Albers       Author

Abby is a wife and mother, antique shopper, entrepreneur, gardener, sheep lady, sequin enthusiast and your Midwest Martha Stewart Wannabe.. Follow her on instagram @adventuresinabbyland.

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