Evie the Extraordinary and Her Mommy: The Journey As We Go

I started motherhood determined not to let Evie have too much screen time.  I would say that still applies for TV, but I am now convinced that the iPad is a great tool for Evie's learning.  She is, after all, a child of the future!   As technology gets used more and more, especially with assisted learning, I see it as an advantage for Evie to already know how to use an iPad. Here are our favorite apps! Peekaboo Farm: When Evie first started looking at this app, she didn't understand that she should hit the screen to see the animals.  Now she understands Cause and Effect, and gets rewarded by a cow appearing and mooing at her.  This is not to be confused with Peekaboo Kids (instead of Farm), which isn't bad, but shows certain animals answering nature's call and then cackling, if you're offended by that. Peekaboo Fridge:  A variant of Peekaboo Farm, but just as good.  If we are teaching her about food, then why not?  They also have Peekaboo...

We got the go-ahead from our GI doc to cut down the amount of formula by g-tube to try to make Evie a little hungrier.  There is a whole world out there about different philosophies of weaning kids off g-tubes, and I won't go into it here, but it's truly making my head spin.  I am just going to give this plan a chance (of reducing 20%*) and give Evie a few weeks to figure out that food is even more fun than she thought.  We expect she will lose a few ounces here and there, and our goal is to use some food strategies to keep her from losing too much weight while she expands her food horizons. The most important lesson for the summer is: FOOD IS FUN, EVIE! So you need your kid to gain weight. She doesn't even eat food with too much texture yet. She can eat purees and yogurt, and that's about it.  How do you expand her palette and avoid food aversions at the same time? I haven't come across a comprehensive list of food tips, so I'm going to write down what...

One year ago, we were already in the hospital with Evie, who was prepped for her big day.  It's not every day that your child goes in for open heart surgery. I felt terrified, excited, anxious, and confident all at the same time.   Terrified because of all the risks of heart surgery. Excited because finally my baby wouldn't be too tired from the 3 holes in her heart to do anything.  Anxious because Evie's life was in someone else's hands. Confident because Evie was already a miracle from God, and He had already shown us that she had things to do in her lifetime!  When Evie was picked up by a nurse and the nurse walked away from us to the OR, she looked over her shoulder at us and my arms felt empty.  The hours of waiting went in segments of phone calls of updates from the nurse. We wandered around the hospital, just waiting for the next call.  The hardest segment was after the call that Evie was on the bypass machine, which essentially meant that her heart ...

Evie loves books. When we say, "Evie, do you want to read a book?" She gives an excited yell in response.  Every night, Daddy reads 3 books to Evie, and she pays attention. Evie's all-time favorite book is Brown Bear, Brown Bear by Eric Carle.  Thank goodness somehow we got 2 copies of this book. One in each room that Evie hangs out in. Our developmental therapist suggested that we make a book with pictures of important family members so that she could learn their names. I thought about making my own and laminating the pages, or buying a ready-made board book and pasting pictures onto the pages, but I didn't like the thought that Evie could rip apart my hard work with little effort, or that the pages might be too flimsy for her to turn. So I found a company that does this, called Pint Size Production s.  They make board books with digital photos, so the result is a picture book of the quality that Evie is used to looking at. Evie is currently being well-ver...

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! Love, Evie

The greatest guessing game of all is...how 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. ...

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 ...