Freeeeedommm, and what happens June 5

It was a glorious 5 minutes of untethered freedom.

Last night we walked around the kitchen with no cords or tubes attached to Evie, because I had to change out her oxygen cannula for a fresh one.

I got to walk ALL around the kitchen as far as I wanted to with Evie in my arms, and there was nothing to trip on or pull us back.   My surge of happiness while we walked into the kitchen surprised me, even though we've done this before. 


Erick and I have developed cat-like reflexes so we don't trip over the ever-present 25-foot oxygen tube. I like to think that I am quick like a ninja now.  I knew my brief stint playing Fruit Ninja would come in useful (I used my feet too)!

https://lh3.ggpht.com/DLGr7BhIwE2uStQyIqtOCP0Km-ESoY9ntR23tpTmc0V2hemIZXtmzUbxcHXPRaxH2Qc=h900

Evie didn't show much acknowledgement that she had no stickers on her face or little plastic prongs sticking up her nostrils, but she seemed content.

Keeping it real as she poses for her 4-month photo

In less than 2 months, we will probably have real freedom from the oxygen, but she may need to start sildenafil in place of the oxygen.  Being on this "leash" of an oxygen tube makes me think of how I also allow fear and worry to be my leash, and not to accomplish the things I could sometimes. (That is why God gave me a husband who would leave an hour later than I would for the airport!)  There are so many things in our extraordinary journey ahead that could make us feel overwhelmed.  But when we look at Evie smiling and kicking her legs, it is all worth it.

What's next on the path? Open heart surgery for Evie on June 5.
I am looking forward to the surge of happiness when I realize that my baby girl isn't as tired anymore when she eats, and that her little heart isn't beating out of her chest.  I can't wait to see her open her eyes in the hospital bed and see Mommy, so I can tell her that she is ok and that she's my strong girl. 

Happy 4 months, Evie!  Mommy loves you!





Downs or Down? How to sound like you know what you're talking about.

I am guilty of this, mostly because sometimes I get lazy when I speak.

Evie is my daughter, and she has Down's.  Wrong.
Correction:  Evie is my daughter, and she happens to have Down Syndrome.

A good friend with her own amazing daughter sent me this link.  I want to share this, because if I didn't say this correctly and I have every reason to, then I am pretty sure many other people need to know this too. 

http://www.ndss.org/Down-Syndrome/Preferred-Language-Guide/

Some highlights, if you're a scanner like I am (direct quotes from the site):
  • People with Down syndrome should always be referred to as people first.
  • The preferred usage in the United States is Down syndrome. This is because an "apostrophe s" connotes ownership or possession. Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it. The AP Stylebook recommends using "Down syndrome," as well.
Every time someone sees Evie in her stroller and exclaims how beautiful she is, I still wonder if they know if she has Down Syndrome or not.  But I'm getting better at just appreciating that they think she is beautiful.  I think she is beautiful too.

When the lights go out...twice

We survived the snowpocalypse of 2014-2015 with no power outages.  And yet, this past Thursday, we lost power twice for no reason.  Usually this is no big deal (unless you are 8 months pregnant and have to climb 7 flights of stairs in the dark to get home), but it took on new meaning with a new baby, an oxygen tank, and acid reflux.  Evie and I were watching a movie (Labor Day--don't bother) while Erick was at the gym, when all of a sudden the power went out.  I had always kind of chuckled to myself that we had a 60 lb oxygen tank sitting in our living room as backup, but now I understand why we have it. 
Meet Big Bertha the Oxygen Tank--Ollie is scared of her
As the lights went out, the oxygen condenser started beeping to let us know that Evie wasn't getting oxygen.  Then the G-tube coincidentally started beeping to let me know that her feed was done.  Then Evie started crying because she had gas. Basically in the span of 30 minutes, we lost power, the oxygen went out, I scrambled to hook up backup oxygen in the dark, she threw up on me, then the power came back on, and then Erick came home from the gym and missed all the excitement. :)

Then I hooked her back up to the regular oxygen condenser, and then 2 hours later, the power went out again.  Evie entertained us during the blackout with cute baby faces and cooing by candelight.  What a night!

Going to the Big Leagues

Hi all, because of your overwhelming encouragement and support, I decided to make my blogging "official" and moved my blog to www.evietheextraordinary.com.  So no "blogspot" in the address.   I am humbled that people want to read my blog and that you want to share in our journey.  Over 5000 page views! Wow!  That makes me think it's not just my mom reading this! (Hi Mom!)

I am also astounded by the return I have gotten for being a bit vulnerable.  So many of you have shared your experiences with me, and I would have had no idea what you were going through if you hadn't taken the time to write to me.  That's the downside of Facebook...we present the best side of ourselves, while behind the scenes, there is so much more going on.  Thank you for sharing your lives with me as well.

Easter Outfit #1...she didn't poop on it!
Easter Outfit #2, and a big smile.




I Want This For Evie Someday

One of the thoughts I had when I first found out about Evie's 21st chromosome was that she wouldn't be able to go to college, get a job, and get married.  Since then, I've read about DS kids who go on to do amazing things, and ordinary things like getting a degree, getting a job, living in their own place, and even getting married.   I want Erick to someday interrogate someone about how he will treat our daughter. I want him to dance the First Dance with her at her wedding and cry my eyes out.
Evie's 1st Easter dress!

I saw the video below and it gave me hope--hope that one day Evie will find someone who falls in love with her and cherishes her.  He doesn't have to be rich, he doesn't have to be brilliant, and he doesn't even have to know how to drive (cue Shania Twain song). 


This is yet another example in which I remind myself that I cannot control Evie's destiny.  She is our gift from God, and God loves her more than I could possibly love her.  Therefore I will have to entrust her heart to Him.  In the meantime, I'll do my best to teach her that she is loved and she is treasured, and that she can share her love with others.

That time when Marie Kondo gave us advice

I was reading Marie Kondo's Instagram site one day, and it asked people to comment on their home organization struggles.  I thought to m...