Today's post brought to you by the letter R...and S...andV

After five days in the hospital for RSV, we are home! I never knew what RSV was until we were in the NICU. RSV stands for respiratory syncytial virus. Most kids get it by age 2 and get better in 1-2 weeks. But kids who are preemies or have respiratory issues are at higher risk of getting bronchiolitis or pneumonia. Evie got bronchiolitis. Hence the fast breathing that alarmed me and brought me to the ER. Our other little friends with Down Syndrome had RSV, and I guess we joined the club.

I'm pretty skittish about being around people with colds now. I used to not care, but now if I get sick, there's a high chance Evie will get it, and it is so sad when she is sick. I also do NOT want to spend more nights sleeping in the hospital, as fun as it is to see our friends there!

So please don't be offended, friends, if you lean towards Evie and then I ask you if you'd like to use my handy Purell hanging from my purse. I'm protecting my young. :)

Here is Evie after her bath to cleanse her from all the hospital germs. Clean and happy!

Evie lost a pound during her hospital stay, which was a bummer since we were hoping to decrease the amount of food we have to give by g-tube. But the good news is that if we can get her back on an upward trend in weight, then we will have a new Nutrition plan to help her to eat more by mouth. Here is Evie at a GI follow up and clapping for her eating log where we record how many bites she eats each meal!

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Repost with a giveaway! From Straitjacket to Starfish: A Shark Tank win

Update: Hi all, I am doing my first giveaway! If you read my blog post the other day on the miraculous Zipadee Zip, then you know how this thing has changed our lives as parents. The makers of Zipadee Zip liked my review so much, that they offered to help me do a giveaway. All you have to do is 1) "Like" their Zipadee Zip Facebook page and 2) leave a comment about why you could use a free Zipadee Zip on this post! The contest begins Wednesday, May 27 at 12:00 AM and ends on Sunday, May 31 at 12:00 AM. Good luck! a Rafflecopter giveaway ------------------------------------------------------------ Original post: There was a point in time when I was just proud I could swaddle teeny tiny Evie with a hospital blanket. Then she came home and started busting out of the blankets, and woke herself up all the time. Her arms flailed and her legs kicked while she was sleeping, which of course woke her up. But then she got bigger and craftier, and I needed to fin

Going public: Down Syndrome Awareness Day and what it means to us.

Starting this blog was a big deal for me. It's hard to throw out there in conversation that my baby girl has Down Syndrome, because that extra chromosome makes people view her differently. But because it is Down Syndrome Awareness Day on 3/21, I'm going public. Do you know why it's on the 21st? Because of the 21st chromosome having an extra copy! So far, Evie has just been our beautiful baby girl who is learning to smile and reach for things. But as she grows older, I want our extended circle of friends to know, so that they can treat her as a typical little girl who may be a little delayed in her development, but will want to be included just like other kids. I want the other kids to play with her and to learn that little girls with disabilities like to have fun too. Our story about our diagnosis is here . Now that we've met Evie and know what we're dealing with, it's not SO scary as it was before. Still overwhelming sometimes , but I wouldn'

Jumping and Friendship Crafts with Evie

This Youtube video was at first made to showcase Evie's first real jump on a trampoline. Then it became a video with a message about making new friends, because I was just so impressed with how Qole gave Evie the space she needed to feel comfortable enough to say yes to getting on the trampoline. And then as we were making a paper craft about friendship, and we were pulling out different pieces of color, I was struck with how it became a teaching moment for my daughter that people of all colors can hold hands and can look out for each other. May it be so. The world needs it now more than ever.

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

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