Virtual walking, and Team Down Syndrome

Hi all!  Evie here. I haven't learned how to walk yet, but I found out that I can be a virtual walker and still help to raise money for Team Down Syndrome at the Boston Childrens Hospital.  Please consider donating to my team so we can help to support the Down Syndrome Clinic, which has been instrumental in my family's life in the past 2 years.

Here is my very own personal page!

Thank you for your support and love!


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!

Baring my soul at work, and the future of people with Down Syndrome

I just laid it all out there. I hadn't woken up and gone to a communication and teaching conference thinking that I was going to be so vulnerable with my colleagues, but when we were asked to give a 2 minute talk on any topic of our choice, I knew I had my topic. "NO LIMITS."

I started by saying that I wanted to share my journey with Down Syndrome, and to convince them not to limit their expectations of people who have DS. I told them my theme was NO LIMITS.   This is totally a popular tag line in the DS Community, but they had never heard it before.

As I told them that we had found out at 10 weeks in utero that our daughter had DS, and that she was a girl, I started to realize that I might just cry while I told my story to my coworkers. But it was too late--I had already started my story. 

With a voice that started out strong and quickly became shaky, I told my colleagues that my initial response to the diagnosis was to think that my daughter would never go to college, wouldn't be that smart, and would have tons of medical problems. I told them how we found out that our baby girl had holes in her heart. I smiled when I said that as we processed and learned more, we found out that there were people with DS who had PhD's, were champion swimmers, musicians, lobbyists, entrepreneurs, and so much more. There was a palpable relief in the room when I smiled. A couple coworkers told me later that they wanted to cry too, but that when I smiled, they could breathe with me. 

I almost lost it when I said that Evie was taken away from me right after she was born because she couldn't breathe, and then spent 6 weeks in the NICU.  Apparently I still can't say that without tearing up, 16 months later. I shared about how she couldn't eat enough because of the holes in her heart, and that she now has a feeding tube.  

The best part in the storytelling for me was sharing that Evie has surpassed my expectations in many ways, even if she had an extra copy of the 21st chromosome.  The example I gave was that we were told that she wouldn't crawl for a very long time, and she is now already crawling across the living room. I was excited to see what else Evie will show us she can do.  As I finished, I asked my audience of optometrists to remember to place NO LIMITS on people with Down Syndrome, and to enjoy interacting with them as they would any other person.

When I finished, I was pretty much shaking. I had laid it all out there and bared my soul to my coworkers, with whom I'd rather appear unflappable.  I had no idea if I had just stunned them all, and just babbled for 2 minutes.

But they were awesome. They told me that they wouldn't change a thing about how I had presented it, and that I could have been doing a PSA for people with disabilities.  They told me that they felt pulled into my story and were inspired.  And they said that they were glad that I had acknowledged how I had initially felt about Down Syndrome so that they could also realize that they needed to be more aware.

I felt validated by my colleagues, and most importantly, I felt like I had done my share of raising DS awareness for the day.  Even though it totally drove me out of my comfort zone, I knew there was no way that I could pass up sharing my story in the hopes of helping a few more people to understand that the future is bright and unlimited for kids with DS.   And in the process, I found out that there are no limits for me as Evie's mommy either.  NO LIMITS!

Some clips of amazing adults who happen to have DS:

A hip-hop dancer

A lobbyist

This guy plays 7 instruments, travels the world, won medals in the Special Olympics, and has been on Oprah:

An entrepreneur and TV star

A model

The first woman with DS to get a doctorate:

Here are some great resources for further information:
My Child Without Limits
National Down Syndrome Society brochure for expectant parents

Evie's Adventures in Storyland, from a sensory sensitive kid's point of view

Hi Evie fans!  Our first post-pandemic trip was to the  Storyland amusement park in Glen, New Hampshire !  Evie did well with the 2.5 hour d...