Skip to main content

Mommy Achievements and How To Support Evie

Guys. I had a huge breakthrough today. I actually did something the feeding therapist told us to do at home.  She had suggested putting food on Evie's tray to help her feel comfortable with finger foods around her, but to actually remember to do that and implement it is another story (along with all the other therapists' suggestions for various parts of her body).

This Labor Day weekend, I found myself with time to focus on her eating with the intent of being creative.  We started lunch time with a canister of star puffs. I told her I was putting 10 stars on her tray, and because she loves counting, she actually watched me do it. Then we proceeded to eat her pureed mac and cheese while singing the Hokey Pokey.  (If you want to know alternative body parts to sing to entertain yourself during the 20th verse, I'm happy to share.)   It doesn't sound like much, but Evie didn't cry or throw her star puffs, and was willing to touch them and put them back in the canister.  She even picked one up to put in my mouth, and chortled when I chewed it and said how good it was.  For a kid with a feeding aversion, this was a great meal.

Of course, then I turned my back and she took the whole canister of star puffs, dumped them on the tray, and reveled in the feel of many star puffs.   If you think this was a bad thing, it wasn't.  If she wants to play with any food at any time, it's a victory.  So we played some more in the fabulous world of star puffs.  

Finding this moment in time where we have nowhere to be, no agenda, and just time to work on star-puff-touching is a moment that caught me off guard.  Sometimes life is busy, running to school, work, therapy appointments, trying to help Evie to walk more, eat more, and talk more, and it feels endless. But a moment like this in which we were just enjoying the star puffs was priceless.
A moment when Mommy has given into bribery to get Evie to eat


Evie is going back to school on Thursday.  It's been a good summer, mostly full of summer school, but still full of summer activities and more time together as a family.

Cape Cod life.

Evie has been missing the routine of school, and I'm hopeful that she will make tons of progress in the fall in every way.  At our recent appointment to check Evie's ankle braces (SMO's), the orthoptist mentioned that maybe next time he sees us, Evie will be walking.  He said that he could see how much progress she had made in 3 months by the way she was walking with assistance.  I told him that if she is walking by November, I will bring him cake and throw a party in the exam room.  Here's hoping for a party!

Walking with assistance!
The fall also brings a key event that allows us to raise awareness about Down Syndrome and to include our family and friends in supporting Evie.  Evie's Extraordinaries is up for the 2nd year in a row!  The money raised from the Buddy Walk on Sunday, Oct. 7 will be given to the Massachusetts Down Syndrome Congress.  The MDSC has been instrumental in helping us and many other families with prenatal and postnatal diagnoses of Down Syndrome, as well as providing events for support like baby sign language classes and new family socials, and workshops for learning about the scary IEP process.  If you would like to walk with us or support us, the links are below.  It's a short walk around the lake in Wakefield, MA.

Here's the link to join our team or donate: http://mdsc.kintera.org/faf/donorReg/donorPledge.asp?ievent=1179869&lis=1&kntae1179869=EB5146D47EF5459EAFB73ABC6CB7DE40&supId=449041033 Choose the Register Here button, and then Register Multiple People option. From there, you can choose Join Team, and find Evie's Extraordinaries.  Let me know if you have any trouble!
The event information is here: http://mdsc.kintera.org/faf/home/default.asp?ievent=1179869
Anyone who walks or donates at least $30 will get a special edition 2018 Evie's Extraordinaries T-shirt!




Hope you all have a pleasant start to your fall!

Comments

  1. Nice! Go Evie! Progress all around!

    ReplyDelete
    Replies
    1. Thanks, Tina! Our girls are making us proud, aren't they? <3

      Delete

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

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'

Why is Sophie the Giraffe so awesome?!

My husband and I had a discussion about why Sophie the Giraffe is so beloved and effective, yet so simple.  This rubber giraffe is $18-25, and Erick was just astounded that it is so expensive.  I told him that EVERYONE has this giraffe, and he asked why it was so special.  This post is dedicated to my dear husband. A rare photo without her oxygen cannula Evie LOVES Sophie.  So the question is why? 1. Who wouldn't love a toy with its own Wikipedia entry and Facebook page?  I knew Sophie was French, but had no idea she was so old.   2.  Why not a penguin, a duck, or an elephant?  It's the neck.  A giraffe has the perfectly sized neck for an infant to grab and practice motor skills.  Then why not an ostrich?  The neck is too skinny, and no ears for baby to suck on! (You can tell I am sleep deprived, because I am thinking of the ideal animal for a rubber toy.) 3. No batteries required.  Since Evie was born, our battery inventory has grown significantly. Someone need