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

Happy Valentine's Day, everybody! My heart is doing so well, that I have graduated from cardiology follow ups every 3 months to every 6 months!  Mommy and daddy are so ecstatic! This photo is one of the photos from my photo shoot with Nicole Starr. She is our hero because she donated her time and talents to so many families with Down Syndrome.  I would also like to wish everyone a happy Lunar New Year!   Today, I am remembering all my buddies with Down Syndrome who tend to have heart problems and need to stay in the hospital for surgery.  I am blessed with a stronger heart now, which makes it an extra special Valentine's Day! Lots of love,  Evie

Evie is a Houdini at pulling off her socks.  This makes me proud and annoyed at the same time.  I am so glad that she is super flexible and can reach her socks easily, even bringing them up to her nose.  But having to do a "sock check" whenever we are out somewhere is necessary, and my aging back does not like doing squats to pick up the sock while I'm holding Evie. And now begins my search for the perfect slipper socks, and then the perfect walker shoes. All the walker shoes that people so generously gave to us are too big still for Evie.  I evidently passed my genes of small feet on to her.  Side note: someone in middle school once asked me if my feet were bound in China.   I have tons of sarcastic remarks now to this, but all I said was a scathing "No." At this point, if someone asked me that, I would ask them if my feet looked like they were broken and then unnaturally curled into a ball .  But that is for another day.  For now, I am glad ...

Now that we have Evie, I want to have some new traditions for her to look forward to at Christmas time. One of the things I want to start is to give  Evie an ornament each year.  This ornament would have some meaning for her.  I got this idea from our friend Momo's mommy--she took all of her ornaments from childhood that she received and started her own tree when she had her own family. And now Momo gets his own ornaments each year! This year, I made a Shutterfly ornament to start us off. It has some of my favorite pictures on each side. Another tradition I want to start is a yearly digital photo album.  My dad has painstakingly kept a photo album of our family starting from when he and my mom were married.  That is too hard for me to keep up with, but I think I can do a digital photo album each year.  I want Evie to be able to look back and see the pictures of when she was little. A favorite tradition that Erick and I already started was that e...

Hi everybody!  Mommy said I could blog about what it's like to go from being Baby Evie to Toddler Evie.  It's awesome.  I can now tell everyone when I am so happy to see them by clapping my hands over and over again, or I can tell them that I don't feel like talking by whirling around quickly and putting my face in Mommy's neck.   I can also reach things on the table when people aren't looking.  Recently, I've been working on a few things that I'd like to share with you.   I am working on picking things up and putting them down. I'm awesome at picking up big objects, but don't like to let go of them when I'm supposed to.  I let go of things in the car so that they fall out when the door opens, or out of my high chair so that Mommy has to pick it up.   Working on taking caps out of the container and putting them in.  That tube that you see in the picture above is actually an oximeter cable, which is to measure my oxygen saturatio...

Part of having a 1 year old seems to be that I'm bound to be asked if Evie is walking yet.  I cringe inside, because she hasn't even been crawling.  I knew that she would likely not be crawling by 12 months, and I know that every child progresses at their own pace, but it still hurts a little to say no.  It really helps me when people ask "What is Evie working on," instead of "Is she walking yet?"  I want to hug them when they ask the question this way, because I've just been spared having to give an explanation. Usually they are people who have no idea about Evie's medical history, but it still smarts a bit.  At this point, every baby progresses at their own pace, and I know that some kids don't even walk until they are 2 without having Trisomy 21.  So it's still "acceptable" that she's not walking yet. However, Evie is doing pretty awesome.  She is at about a 9 month old's motor skills, and she gets better by the week...

Evie's been trying out some new products. We thought we'd share and maybe someone else will benefit from them too! We are learning that the weight of food on a child's tongue is very important as they learn to swallow with low muscle tone.  Evie has made some big strides in eating as we gave up on trying to get her to drink yucky formula (in her opinion) and gave her all the Siggi's full milk fat yogurt that she wants (nice creamy weight).  She eats the ones with 4% milk fat, with some purees mixed in.  In the world of g-tube weaning, it's all about getting as much fat in a healthy diet so the child will still gain weight and not need a g-tube. Evie at a Chinese restaurant sitting like a big girl in a high chair! Our new favorite product is the Travelmate Mini. It solved the dilemma of the Early Intervention shuttle requiring a car seat to take her to play group. You can attach the car seat to the dolly, and then strap the toddler in their convertible ca...

Hi everyone!  This is Evie!  I turned 12 months old last month.  Mommy has been very busy, so she asked me to blog.   I had my very first birthday party.  The theme was Penguin Winter One-derland.  Mommy was addicted to something called Etsy and Pinterest on her phone.  All I know is that there was a lot of colorful paper around and I was not allowed to play with it!  With Mommy before my party So many people helped my Mommy with my party.  I think she would have gone crazy without the help. She said it was like planning a wedding. I don't know what a wedding is, but I do know that I have a lot of friends!  We had a hot cocoa bar, lots of food, and tons of games. The baker at Stop and Shop went all out in making a penguin winter wonderland cake for me! Mommy freaked out 2 weeks before the party because almost 40 kids were coming to my party, plus about 50 adults. ...