Little Sweet Pea

Monday, May 12, 2014

Listening very intently to her Nana singing to her.

Since we are still following the advice of our doctors in keeping Everly away from indoor spaces and large crowds, many of you haven't had a chance to get to know her personality as of yet. Still others are a distance away and aren't able to meet her. So I thought I would take this journal entry to give you an insiders view of her personality, complete with a video clip.

She is the cutest thing I've ever laid eyes on. I can hardly wait to wake her in the morning. The way she stretches and scrunches her whole body when I lift her from her bassinet. The way she opens her little eyes and focuses on me just melts my heart. I love to nuzzle her cheeks and her chubby neck. Her big eyes look at me when I bend down to kiss her and it just makes me smile. Some mornings she will just rest in your arms and stare at you as if she's memorizing your face. She is in deep concentration and you don't want to break the stare. It's so special! I can't get enough of her!

Such a sweetie pie!

She has become so expressive in the last few weeks. She is starting to make little sounds. We've also begun to notice that her face changes depending on the activity or even how interested she is in something. She has the faintest smile on sometimes when we are singing play songs with her. That is the newest thing and it has been so fantastic to see her change. I love to count to three before we start a song to give her "heads up" and maybe teach her a cue of what is coming. Just today we got lucky (well phooey on that...God blessed us) with capturing it on video!! I'm going to try to get it uploaded at the end of this entry. I gasped out loud when I saw the little corner of her mouth move upwards. It was a magical moment!

She has taken a great interest in her toys and surroundings the last couple of weeks as well. We are working on tracking with toys and helping her to turn her head and follow them left and right. She waves her arms and moves her legs while having playtime on the floor. This is great for her physical development so it's thrilling to see. She has favorite toys that clearly prefers because she focuses on them for great periods of time, like her cow, a pink dog and a baby doll (thanks Melissa, Sandy, and Susie!). She is so much fun! She is a curious being and loves to be carried around to check out her surroundings, too. One of her absolute favorite things currently are lights. Flashlights, fan lights, ceiling lights and now we have her two projector lights. One I bought with ocean waves and one we were gifted (thanks Cindy!) with stars. She can fall asleep just staring at them.

Love the little tongue sticking out!

She is a very happy and easy baby. She rarely cries and the times she does we can predict because we know what she doesn't like. For example, you can put money on the fact that she will cry when you take her out of the tub. She is wrapped snug in a thick towel the second she leaves the water but she will cry anyway. She goes with the flow typically and seems to be content with most things.

We have become very comfortable with her after twelve weeks. A couple of weeks ago, we decided to remove her from constant monitoring with the pulse ox machine. The beeps were stressful and we know her well enough to see when she needs oxygen or stimulation. She does still have the monitoring in the car, during naps when she's not closely attended and throughout the night, though. We have enjoyed the flexibility we all have without the machine so much more. She can be moved throughout the house with ease, can be lifted without setting off the sensors and does not have the cords attached 24/7 now. We are all breathing a sigh of relief!

Everly swimming in her tub at the pool. Look at her cute swimsuit!

As the mommy of a special needs baby, I am seeing how little milestones like smiling or recognizing faces are huge! Everly because of her Trisomy is cognitively and physically severely delayed so to see this progress is so exciting! The little things I know we as parents with healthy children take for granted...first smiles, recognizing family, holding her head up, giggles. But it makes those moments all the more special when they happen because for us since they aren't guaranteed to happen. So, it's like a Christmas present when they occur! 

We continue to be amazed every day as she thrives and defies the odds so very clearly set for babies with Trisomy 18. We are just in awe of this little girl!

Please continue to share her Facebook page Love For Everly and her website to spread awareness about Trisomy 18. Let's help the medical community see that their research is not everything!

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." James 1:17

With love and appreciation,


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