Monday, May 27, 2013

This is Life Changing

Jesse and I said this to each other more than once after Ellie was born. "This is life changing." We were talking about Ellie's Down syndrome. The fear of the unknowns for her and what our life was going to end up looking like. Well we were right, having Ellie is totally life changing.  But in a way we never could have dreamed. This sweet baby has changed our world for the better.  I can't even express the joy I feel about this little girl. Every person who encounters her can feel it too. She puts a spell on everyone she meets with those amazing blue eyes with sparkles of white. 

April and May have been really busy around here. I'm back at work full-time. My wonderful, caring, loving and BRAVE mother-in-law is watching the kids for us 4 days a week. We are so grateful! We also went boating for the first time, were given a baby shower for Ellie, she had her 4 month check-up and her first ever acting debut!

When we realized Ellie was "extra floppy" with her neck strength, Jesse decided we should probably sell our boat.  This was back in February. The thought of it made me really sad because this was something we love to do as a family.  It's relaxing and takes us away from the world. I told him if that's what he thought was best, then maybe we should. She probably wouldn't be able to go out for another year anyhow.  Well he never sold it, and in May the weather was perfect for a boating trip.  We decided to test it out  and see how she would do. Well she loved it. She loved the scenery, the wind in her face and the gentle bumping of the boat along the water.  I looked at Jesse and I could feel a lump forming in my throat. This was big for us.  That day on our boat signified a lot about how much our life had changed, but how it was just as I had imagined it being before Down syndrome became a daily topic of conversation. We ended up taking the boat out three times that week.

Carry On - Fun.

Ellie's 4 month appointment went awesome.  She's a long string bean! She is weighing in at 12-1/2 pounds (only 20th percentile on a typical baby chart) and 26.5" long (off the charts on both the Ds chart and the typical baby chart!)  I felt really good and proud of our girl after I left that appointment. Her doctor was so impressed with her neck strength and her growth. He said "whatever you are doing, keep doing it!" So that's what I plan on doing! I have researched (way too much) and am taking supplements that she's getting through my milk. Who knows if it's helping, but it's worth a shot!  In two months we have her big 6 month appointment at the Down syndrome clinic at OHSU.  There they will check her hearing and she'll meet with a Neurologist, Occupational therapist, Physical therapist, and Speech pathologist. It's a half day long, and I'm feeling a little anxious about it.

In April my amazing mother-in-law and sis-in-law had a beautiful tea party (baby shower) in Ellie's honor. It was so much fun and I feel so grateful to have such amazing family and friends. It was nice to catch up with everyone.  I loved watching everyone snuggle our girl.  

Dani and Julie also made a book of wishes for Ellie. It's so heartfelt and beautiful. I'm going to save this for her forever! I wanted to share a few of the entries.

From Ellie's Great Grammy
From Uncle Noel, one of Ellie's biggest fans :)
From cousin Kellen, age 7
From Ellie's amazing Grammee
From my mom, Grandma Barbara
My mom's wishes were quite long but one sentence that stood out was "A big wish that I have for you and your life is that you are as happy as you make all the people that know you". I love that. 

Grandmee and Grandma lovin!
Lastly, the Down Syndrome Network of Oregon was looking for a newborn for a video they were shooting. When I found out what the video was for I was really excited. It is going to be used for the medical community as an educational tool on how to appropriately inform parents when their baby is diagnosed with Down syndrome. Jesse and I felt this was a very important message to be a part of! Our own personal experience was not necessarily a positive one.  

Here is Ellie's acting debut, we are so proud of her! She was only 3 weeks old when it was filmed. When Luke watched it he said "mommy, you look really different!" It cracked me up. :)


We are so grateful for how our life has changed. We keep hearing over and over how lucky Ellie is to have been born into our big crazy family and our close knit circle of friends. But I think we are the lucky ones.  Thanks for changing our life for the better sweet baby girl!

The Luckiest - Ben Folds


  1. That wish book is such a beautiful idea. And I love the I Can video. Wish I would have seen something like that when Russell was born.

    1. I hope that the Down syndrome network of Oregon will get the video out there! I think it's great for not only the medical community but also new parents. :)

  2. The wish book is wonderful! What a great keepsake to pass down. She's such a cutie!

  3. Loved this entry but OMG TEARS!! The wish book got me!! Full size watermelon in my throat. What an amazing family Ellie has and what a beautiful little princess she is!

    1. LOL Jenny! Full size watermelon :-P
      She's such a princess. Can't wait for her to marry her prince Mason!!

  4. I tried to post while in Europe, but it wouldn't go. Don't worry about what will be, celebrate where she is now. Down syndrome does not define her, it's one small particle of who she is. Just like I have a small "b" quality. :-) she is loved

    1. Mary Gene I'm just now seeing this comment, and am cracking up at your small "b" quality. I'm right there with ya, haha!! Thanks for the sweet comments, I appreciate it so much.