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!