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

Merry Christmas to everyone from Evie!  Evie has been busy meeting relatives and waving to the masses. She literally waves to everyone.  She got so many presents, that Grandma has to bring some back for us when she comes back to Boston. Her favorite part of the presents was the wrapping paper!  This is our second Christmas with Evie, but in some ways it feels like our first, because we were in the hospital last Christmas with a one week old baby!  What a difference a year makes!  We've been working on extra tummy time for Evie during the holidays.  Her upper body strength is great, but her legs don't want to move along with her arms to crawl!  The best incentive to get her to move is her feeding tube syringe. This is good news and bad news. Good because we have something she really wants, and bad when she tries to grab the syringe while we are feeding her by g-tube. We have spilled quite a bit of water and formula this way!  I...

My dearest girl, I waited and prayed for a baby for so long, and here you are. I've had a whole year with you!  You aren't even really a baby anymore.  You are a squirmy, curious toddler with an infectious laugh and a smile that could light up the room. You are also a fighter.  You lived through 6 weeks in the NICU and charmed everyone around you, and you made open heart surgery look like a piece of cake.   The smiles that you gave after heart surgery made me realize that 1) you were not feeling well enough to smile very much before, and 2) that you have the cutest dimples. The experience confirmed to me how much God has been providing for us on this journey of being your parents . You (mostly) patiently wait for us to change your feeding tube dressing or let some gas out of your tummy. You put up with Mommy's playing dress up with you and telling you to pose for the camera. You even give a cheeze-y smile for me when I ask. You charm everyone at your many ...

Sometimes when I'm hooking up Evie's g-tube in the food court in the mall, I look around to see if anyone is watching.  I still brace myself when someone shows interest in what we're doing.  I have no idea what they will say or conclude, but I do my best to explain why she has a feeding tube in a practical way. The Feeding Tube Association just released a brochure that tells our friends and family how to be helpful to us.  I love their list of what is helpful and what is not so much, that I had to post it.  Here is the full brochure: http:// www.feedingtubeawareness.or g/ Family_and_Friend_Guide_to_ Tube_Feeding.pdf Evie's mommy's commentary in italics below ( my original g-tube entry is here ): What is Helpful. Listening. Parents who are just starting on this process have a lot on their mind. They have concerns and they may not know all the answers yet. When Evie just got her g-tube, we were having trouble figuring things out post-NICU stay, and answer...

I just realized that today we hit 2 good milestones! Firstly, we said goodbye to one of Evie's many medications. This is her 6 month anniversary since her heart surgery for three holes in her heart!  She has had to take half a baby aspirin as a preventative measure for six months after the surgery. Today we stopped on doctor's orders, and good riddance!  Cutting pills in half and then getting them to dissolve in a small syringe of water to put in her g-tube is not something Daddy will miss.  The other milestone is that we don't have to see the Ear, Nose and Throat specialist anymore!  Since she doesn't wheeze with stridorous sounds from laryngomalacia, and also since she hasn't had any ear infections, the doctor doesn't need to see Evie anymore unless she gets an ear infection.  Kids with Down Syndrome are more vulnerable to ear infections due to their ear anatomy, but Evie has been lucky so far. Thank you, God!  One less doctor to visit!  ...

A very happy Thanksgiving from Evie!  We are so thankful for this little turkey. She has brought us so much joy!  We are also thankful for the friends and family who have surrounded us with love during this very adventurous year!

What do you do when your daughter's g-tube button pops out of her stomach while you're in the middle of a busy restaurant? In the middle of S&S Restaurant, I pulled Evie out of her stroller and didn't realize the G-tube was threaded through the stroller strap.  I looked down at what was pulling on her, and saw the whole G-tube button sitting there in her stroller. and the hole to her stomach peeking out at me.  Someone without experience with G-tubes might expect that blood and guts would come pouring out, but the only thing that would pour out would be milk or whatever food she had in there. I got scared to death of this happening when we first left the hospital. They just told us we had to go to the ER if her button popped out of her stomach, and that we had 2 hours to get there before the hole closed and she had to have surgery again to get another one on there.  Thank GOD that The GI nurse at Boston Childrens taught me how to change it out. On a d...

Evie's mommy had a little too much fun preparing for Halloween. For so long, I've dreamed of having a child of my own to dress up in a cute costume for Halloween.  Then Evie came. And I got THREE costumes. This is today's final costume--the one that Evie tolerated most.  I think it turned out well, since I like penguins so much. She used to have a long sleeve white shirt that went with the outfit instead of a polka dot shirt, but a poop explosion on a red blanket took care of that, once the blanket went in the wash and turned all of our laundry pink.  But I had other aspirations as well.  For a cute New England girl, how much did it make sense that she would be a lobster??  But as soon as I put this on, she gave me a look like when will this be over, Mommy.  The second I took off the lobster hat, she was all smiles.  My attempt at brilliance was to make her the dancing left shark from Katy Perry's Super Bowl performance la...