Skip to main content

The greatest guessing game of all

The greatest guessing game of all to motivate Evie to eat.  Someone was surprised that we actually count the number of BITES (and not ounces) that Evie takes. Well, that's because that's all she'll eat by mouth.  We are averaging 5-8 bites a day, although every once in awhile she'll eat more than 20 bites for our nanny, who is definitely our MVP. The end goal is to cut down on her g-tube feeds so that she'll be hungrier. When we get clearance for having gained back all the weight she lost this winter, we will start the adventure!

In the meantime, we definitely have learned some helpful tips for those for which eating is not second nature. Here are some of the finer points of eating we have learned:

1.  A child with oral aversions or sensitivities can be very sensitive to where the food falls on her tongue.  When we feed her with a spoon, she does fine with food on the tip of her tongue.  But any food towards the middle of her tongue makes her gag.

2. For some reason, when she gags, if we blow gently on her face, she stops gagging and smiles.  It's like magic. Wiping her mouth helps too, but we try not to do that every time because we want her to get used to the sensory feeling of food on her face.

3. Part of the goal with Evie's eating is to teach her that food is fun.  So we try to help her to play with food, in the hopes that she will learn to bring her fingers to her mouth and start tasting more things. She loves playing with water and grabbing her bowl while we are trying to feed her, and then flinging it to the floor. Thanks, Evie...

4. They say spicy and salty foods can be motivating for a child, but Evie just makes a funny face and turns her head away.  She still prefer sweet food. 

5. When Evie turns her head away and grunts to say "no," we have to honor her "no" and avoid continuing to offer her food.  If we don't respect her "no," the food aversion gets worse. We keep telling ourselves it's the quality of the eating, and not the quantity.

6. I have stopped buying gadgets or fancy cups.  I don't think they work (10 different cups later).  That's just my experience with Evie, but it seems like the things that have worked best are clear medicine cups for drinking (smaller volume, less waiting time to get to the mouth, able to see when the liquid is close to the mouth), low profile spoons (we use the ones below or the Munchkin infant spoons), and modeling drinking and eating for Evie.  Evie likes to drink from adult glasses when she sees us drinking from them. She prefers fine china instead of cheap plastic cups.  That's my Princess Evie!

7. We were told to put rolled up towels under Evie's arms in the high chair to stabilize her. Apparently she won't bring her arms up to play with food because she's working so hard just to sit up in her chair.  Who knew it was so much work to bring her hands up to the tray? This mommy didn't!

So what is Evie doing lately and saying yes to?  Besides eating Mommy's cell phone and licking her iPad, she is still ok with Level 2 purees (mostly fruits), Siggi's 4% milk fat wild berry yogurt, and tastes of my Boloco Soy Berry smoothie.  She LOVES applesauce and the other flavors of the Gerber's First Tastes snacks.

What kind of help do we get for Evie's feeding?
We have a weekly visit from an Early Intervention speech-language pathologist (SLP) who knows a lot about feeding. We also see a SLP every few months at Boston Childrens, and then see another SLP when we have a morning at the Down Syndrome Clinic at Boston Childrens.  With all those visits, I wish it meant that we made tons of progress, but really it's up to Evie and how much she wants to eat.  My hope is that soon we will be given medical clearance to cut back on her g-tube feeds and start making her more hungry so that she will be more interested in eating higher volumes.  Evie is finally back at her weight that she was in November, before the horrible winter flu/RSV/norovirus season that hit us!

We hope everyone is enjoying spring as much as we are! Lots of pics of Evie enjoying springtime to come!


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

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'

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.