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

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. ...

I'm pretty sure that at least half of the city is sick right now with a cold.  Evie has been sick EVERY SINGLE WEEK since the end of November.  She starts out with a stuffy nose, then a cough, and then gets better, and the following week gets sick again.  Thankfully, this was a healthy week for her. We were on a roller coaster of no sleep and then recovery.   When she's sick, Evie inevitably ends up sleeping on top of mommy just so I can get a few hours of rest in a row.  So precious, yet so hard.   However, one thing is different. I was in mortal terror of her getting sick when we left the NICU last February. Now I am not. That is pretty huge. Last week, poor Evie was so congested that we had to take her to Urgent Care to make sure it wasn't going to her lungs. We are just weaning off Sildenafil, so there's that added sensitivity about her lungs.  We count ourselves lucky so far. When we went to the hospital to make sure she didn't have RSV or bronchi...