Skip to main content

Tube Weaning and Mountains of Furniture

First Mommy, and then a note from Evie!

Mommy says:
At this time a year ago, we did a happy dance if Evie opened her mouth for any food.  She started eating more purees from pouches, and showed a love for apple and mango flavors.  But we were only counting the number of bites she took last August.  Fast forward to June, and we are counting the number of ounces she eats.  She averages 12-14 ounces a day, plus 2 boluses of 120 ml of Pedicure Peptide during the day.

She is still mostly on purees and yogurts, but we are now mixing in mashed egg yolk and blending real foods like chicken thighs and rice and mac and cheese. She still won't pick up any food and put it in her mouth, except for deigning to lick something once in awhile.  She is also sipping more liquids by mouth too, although we are counting by sips and not ounces.  She has shown that she likes my flavored seltzer water.  That wins the record for most sips!

I read on one of my many Facebook parent groups that blending real food for their tubies helped their children to increase their appetite.  In the past week, I have been blending more real foods like casserole or quinoa mixed with other foods, and am seeing a significant difference in Evie's energy levels, appetite, and willingness to eat.  Maybe we lost the first iPad wean, but I'm happy that we got the thumbs up and a "good job" from the GI doctor.  It helps that Evie has decided that she likes climbing all our furniture and burns calories in the process.  Our living room furniture has now been rearranged to a less dangerous arrangement.

Next step: weaning off her night feeds.  We are down to 50 ml of Pediasure Peptide at night mixed with a bunch of water.  We are going to say goodbye to the 50 ml next week, and then start moving the water to the daytime (somehow).   This means that she will be a lot easier to care for at night, and poor Erick doesn't have to wake up at 5 am to shut off the pump!

Evie made a list of what we've learned in the last year about helping a (medically-stable) tubie.  Hope that it helps someone!

Evie says:
Hi everyone!  I hope that you are enjoying the summer.  Mommy keeps buying me dresses and shorts.  My SMO braces make my feet hot, so I like wearing less clothes.  Anyway, enough about my feet.  I want to share with you what we've learned about my tube life.

Mommy said to comb my hair, so I did. 

1. Thick and smooth!  That's how I like my food.  Thick so that my tongue knows that there's food on there and I can swallow better.  Smooth so that I don't gag on lumpy stuff.  Some older lady informed my mommy that I have all my teeth, so I should know how to chew.  It's not that easy, lady.

2.  The Ninja blender brings me new foods.  Mommy held off on making me new foods because I was so sensitive before.  But she got brave and started blending foods like casserole or mac and cheese, and they were actually not that bad if she mixed them with applesauce!   A couple things she made were YUCKY.  I gagged right away.  And I made a sour face to convey my disgust. She had to start over with another food.   (Mommy's note: For those of us who can't "swallow" the price of a Vitamix, the Ninja blender has been a godsend and kickstarted me into making more real foods for Evie.)  **On super sale right now, 52% off! If you use my link, Mommy buys me a new book!**

3.  Real foods make me eat more!  In the two weeks where Mommy has made me more real food that I can eat, I've pooped more regularly.  I like to take up a stance at the sofa and quietly stand there until I'm done.  (Yes, I'm standing at the sofa!)  (Mommy's note: I read on a tubie FB group that the parents who had started a blenderized diet for their kids saw an increase in appetite and faster weaning off the tube.  So far so good! And yay for less constipation!)

4. Mountains of furniture.  My uncle Dave does rock climbing and I do furniture climbing.  It gets the juices flowing and the food moving, and boy, do I work up an appetite!  I chuckle to myself when I pull myself up onto the sofa.  You can't hide anything from me now!

#tbt to 2 years ago, when we went rock climbing with Uncle Dave!

5.  Daddy replaces my overnight formula with water.  I find that I wake up more ready to eat now, which makes me peppier for the day ahead!

 Mommy's latest blended concoction, approved by Evie:

  • Annie's mac and cheese
  • raw spinach
  • shredded chicken thigh
  • avocado oil
  • Happy Tot's apple and butternut squash (lots of it)

--> Split up into cubes and freeze, or freeze in 4 oz containers.  I serve Evie about 3 TB and add a pouch to it for each meal.

That's it for now!  Thanks for reading, friends!  I am excited about the fun things I am going to do this summer (but maybe not ready yet for the potty, even if Mommy put me on it for fun)!


  1. Haha, I wonder if that combination of labels has ever been used before. =)

  2. Hi amyeye,

    My name is Anuj Agarwal. I'm Founder of Feedspot.

    I would like to personally congratulate you as your blog Evie the Extraordinary and Her Mommy has been selected by our panelist as one of the Top 100 Down Syndrome Blogs on the web.

    I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of Top 100 Down Syndrome Blogs on the internet and I’m honored to have you as part of this!

    Also, you have the honor of displaying the badge on your blog.



Post a Comment

Popular posts from this blog

Repost with a giveaway! From Straitjacket to Starfish: A Shark Tank win

Update:   Hi all, I am doing my first giveaway! If you read my blog post the other day on the miraculous Zipadee Zip, then you know how this thing has changed our lives as parents.  The makers of Zipadee Zip liked my review so much, that they offered to help me do a giveaway. All you have to do is 1) "Like" their Zipadee Zip Facebook page and 2) leave a comment about why you could use a free Zipadee Zip on this post! The contest begins Wednesday, May 27 at 12:00 AM and ends on Sunday, May 31 at 12:00 AM.  Good luck! a Rafflecopter giveaway  ------------------------------------------------------------ Original post: There was a point in time when I was just proud I could swaddle teeny tiny Evie with a hospital blanket. Then she came home and started busting out of the blankets, and woke herself up all the time. Her arms flailed and her legs kicked while she was sleeping, which of course woke her up. But then she got bigger and craftier, and I needed to fin

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about making new friends, because I was just so impressed with how Qole gave Evie the space she needed to feel comfortable enough to say yes to getting on the trampoline.   And then as we were making a paper craft about friendship, and we were pulling out different pieces of color, I was struck with how it became a teaching moment for my daughter that people of all colors can hold hands and can look out for each other. May it be so. The world needs it now more than ever. 

Going public: Down Syndrome Awareness Day and what it means to us.

Starting this blog was a big deal for me. It's hard to throw out there in conversation that my baby girl has Down Syndrome, because that extra chromosome makes people view her differently. But because it is Down Syndrome Awareness Day on 3/21, I'm going public. Do you know why it's on the 21st?  Because of the 21st chromosome having an extra copy! So far, Evie has just been our beautiful baby girl who is learning to smile and reach for things. But as she grows older, I want our extended circle of friends to know, so that they can treat her as a typical little girl who may be a little delayed in her development, but will want to be included just like other kids.  I want the other kids to play with her and to learn that little girls with disabilities like to have fun too. Our story about our diagnosis is here .   Now that we've met Evie and know what we're dealing with, it's not SO scary as it was before.  Still overwhelming sometimes , but I wouldn'