The Big Tube Wean: Month 5

The Big Tube Wean: Month 5

Big News.
BIG BIG NEWS.

Brenna hasn’t used her tube AT ALL – except for medicine – in 12 WHOLE DAYS!

Today marks exactly 5 months since we began this tube-weaning process, and it’s been a little stressful and challenging, a lot exciting, and overall wildly successful.

Our biggest challenges now are some princess-like behavior that includes Brenna not wanting to get her hands messy during meal time, so she insists that we dip her food and feed her if it involves something like ketchup or ranch dressing.

We are countering this behavior by pushing utensils like forks, which she is taking to quite well, but she has a lot of trouble getting the food to stick on the fork, so she’ll say “help! help!” the whole way through. This is age-appropriate, so we’ll keep working on this skill so she can hopefully learn for herself soon.

The most exciting aspect of this has been seeing Brenna find new food that she loves and figuring out new combos  – such as the scrambled eggs and ketchup that Hunter turned her on to at the FIRST Conference!

(And by the way, Hunter appeared on the Katie Couric Show this week to talk about living with Harlequin Ichthyosis!! What an incredible advocate she is.)

I am constantly amazed at Brenna’s appetite. It is not uncommon for her to finish a typical dinner…and then 45 minutes later, she’ll be asking for more of something and she’ll put away 4 chicken nuggets or 2 hot dogs as “dessert.” We finally decided to stock up on some of her favorites in bulk this week… she’ll go through a standard bag of pepperoni in 5 days – it can be hard to keep up with!

We currently have a minimum amount of water we need to try to get her to drink – 30 ounces – and for the past 2 weeks, she has been hitting that amount every day. The Munchkin sippy cups with handles have become her favorite, and she’ll down the contents of a cup in 30 seconds when she’s thirsty.

Her most recent weigh-in was a whopping 19.1 pounds, almost making me tear up.

We started this tube weaning journey at 19.4 pounds, and 5 months later, cutting out all of her tube feeds completely, she is almost back to to her highest weight ever in her life.

Remember how I had a very simple dream of my children eating breakfast together?

Yeah, it’s happening. And it’s all of the simplicity and normalcy I had imagined…


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6 thoughts on “The Big Tube Wean: Month 5

  • July 17, 2014 at 1:04 pm
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    That’s awesome!! Go Brenna Go!! 🙂

  • July 17, 2014 at 6:41 pm
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    Wipes tear from eye!! Oh my this is just the very best news ever!!!!!! *does happiedance*

  • July 17, 2014 at 10:22 pm
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    <<<<Jumping for joy! That’s awesome! She is awesome! And will continue to be more and more awesome! Great job Brenna!!! 👍💜

  • July 18, 2014 at 9:18 pm
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    I just found your blog, and I’m crying like a baby. You have a beautiful family. You are wonderful parents and just amaze me! And brenna is cute as a button.

  • July 23, 2014 at 9:57 am
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    Lovely! Her skin is looking really good. She looks so happy 🙂

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