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

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)! 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 ...

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 se...

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 m...

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.

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 h...

I bet the title got your attention.  When Evie was still in the NICU, we were offered the option of Sildenafil, otherwise known as Viagra, for helping Evie's pulmonary hypertension.  Basically the tiny dose of Sildenafil would help to dilate the vessels to help the oxygen saturation in her blood. (I think.)   Apparently insurance companies get confused when Viagra is prescribed for a baby girl.  The nurse said that sometimes they call and ask if the diagnosis was supposed to be erectile dysfunction.  Yes, ma'am, because a baby girl would have erectile dysfunction.  The other option was oxygen, not because she can't breathe, but because it helps her oxygen saturation levels (i.e. amt of oxygen in her blood) get closer to 100%.  It was tempting to choose Viagra because then we could take pictures without an oxygen cannula in the way.  But Viagra is still a medication, while oxygen is something more benign.  God knows that Evie is already...

This blog isn't all about poop and gas, but I can't resist. Today was our second time at church with Evie.   This time she was awake for most of the service, and sat on Daddy's lap.  As the pastor was preaching, and all was quiet except for his voice, Evie let one rip. TOOOOOT! It was an adult-sized fart that seemed to echo.  People around us giggled.  Erick pointed at Evie. A pastor who shall remain nameless whispered, "Nice job, Erick!" I blame the probiotics. We are trying half a packet of Culturelle for Kids in her nightly g-tube feeding to help her be less gassy. So far she is still gassy--just louder! We'll give the probiotics a little longer to work though. Maybe she's just clearing out her system. Evie's yawn has no bearing on the quality of the sermon. It was a very good sermon! Getting better at taking Ollie the oxygen to church! You wouldn't even know it was there (until you almost trip)!