Please please please pray for @galaxiea’s baby sister and her family. She has been in the hospital for days because of trouble breathing after surgery and more complications have arisen.
We call her Snart and she’s the happiest, sweetest, most jubilant baby you’ll ever find. She plays the piano like nobody’s business, is a tiny meme, and a little miracle all wrapped up in breadstick bby arms and pudgy crescent roll legs.
She is so very loved, please keep her in your prayers.
Update via galaxiea:
“things. aren’t getting any better. its looking…..pretty bad right now actually and we still aren’t. really sure Why exactly or what’s going to happen or what the outcome is looking like bc theoretically she could make a Full Recovery and come home just fine within days but. there’s also a Very real possibility that we could lose her soon. which has always Been a possibility and like. we’ve met people who have lost kids to spina bifida but bc things were going soooo well since she was born we all just kind of. forgot.
we don’t have full results from the sleep study but they did find out she has both obstructive apnea (less serious and less drastic) and central apnea (way more of a problem and much more apparent). which basically means that her brain isn’t sending the proper signals to control breathing while she’s asleep so she’s just. Not. more likely than not this is bc of the chiari malformation which. we can’t do anything about or really Fix
aside from that please be praying for my mom. this has been Really hard on her and she’s personally had experience both with Major depression and seeing families torn Completely apart by a disability (her brother’s) and at this point she’s already sort of. given up. my dad and two of my younger siblings visited today and he said you could See it before she even started talking which is rly concerning. its just rly affecting everyone super hard (my brother josh I didn’t. think was old enough to get the severity of the situation but my dad said on the drive back home after my sister had fallen asleep he was just in the back sobbing which Hurt My Soul so theres that) and like…..ive never seen my family so depressed lol its just rly painful i d k no one knows whats happening or what we’re going to Do“
from my dad’s update on evanna’s facebook page:
When we initially found out about Evanna’s diagnoses, we accepted them without hesitation, because we believe life is precious…and we wanted her story to reflect that.
We knew there could be difficult times, and we experienced some of those in NICU, and we certainly have this past 8 days…and today, and the coming few days.
Here’s where we are: over the course of the past 8 days and the now 2 shunt revisions, Evanna has experienced varying degrees of apnea and heart rate issues. There’s range of possible causes, and though we’d love to determine or know, it doesn’t change where we now are, and what her new ‘normal’ appears to be. Her sleep study indicated some fairly severe apnea–both obstructive (where there’s something physically causing blockage of airflow) and central (where the brain doesn’t send the signals to the body to breathe).
Today’s care conference brought all the different doctors and groups together to discuss her case as a whole, but to also discuss these details and discuss possible treatment plans.
Which brings us to possibly not only the most difficult time of her already-difficult stay here, but most difficult time of her story: we have to decide the treatment plan.
We have to decide on the basis of not only her life and quality of life, but that of the entire family and those around us. If that sounds somber, it’s because it is. Prognosis differs with each, but they share a common conclusion: at some point, even with the most aggressive and invasive of the treatments, she will some day not wake up. [added note: I believe based on what options we’ve discussed and which we seem to be leaning more heavily towards, we’re looking at a life expectancy of a few months to a few years. hard to say for sure, but…]
We’ve talked with the rest of the kids tonight because while they are not making the decision (nor would we want them to have that weight on them), their thoughts and feelings are important to us. Seattle Children’s isn’t pushing for a decision within any specific timeframe, but we want to make a decision sooner rather than later to work toward getting her home sooner.
Evanna’s story isn’t over…and it may be far from over. We will continue to love on her and celebrate her life and the absolute joy she brings us for as long as God allows…and share it with you all.
last time i gave an update was here, almost exactly one year ago. this is what we were looking at, facing the all too real possibility of evanna not coming home.
where are we now?
evanna has brought so much love into our lives. yes, it’s been really hard. it’s painful. we’ve all had to make sacrifices in order to accommodate for how she’s flipped our whole life upside-down, but it’s been so worth it and none of us would ever change the situation if we were given the chance.
she’s doing so well and getting stronger every day. she can crawl around, push her little baby wheelchair, and climb on and off our laps. she has a huge attitude and makes it very clear what she likes and doesn’t like. her sense of humor is incredible and her laugh is contagious. she is truly overflowing with joy.
we’ve still got a long ways to go, and no, the fight is never really over. there’s still hospital trips. there’s still treatments and appointments and therapy. but for now, it’s smooth sailing.
thank you for praying back then and even now. it means so, so much to me and my family to know that we have so many people around the world thinking of us through this whole crazy experience. thank you for all that you’ve done.
!!!****** EVANNA JOY IS HAVING SPINAL SURGERY… THE WEEK BEFORE HER FAMILY IS BEING FORCED TO MOVE ******!!!
(I took @galaxiea ’s summary to tack on to Evanna’s story here)
“hey yall, things are crazy stressful again. our landlord told us on monday that we have until august 31st to move (they’re selling the house we’re renting), and we can’t. afford to. especially considering how garbage the rental market is right now. we’ll more than likely be stuck somewhere far too small for my family of 7, possibly even in an apartment.
the timing for this is just perfect – evanna’s going into a very important and semi risky surgery the week before our moving deadline, which means she’ll be in the hospital from the 20th-28th if everything goes well. the surgery has a 25% chance of causing a shunt malfunction (one of the most “simple” complications) which would mean anywhere from another day to another few weeks in the hospital on top of that. my mom being in the hospital with her during the most busy and most hectic part of packing and moving is going to mean a lot of stress for the rest of us.
the sudden need to move is just a big strain on us, emotionally/mentally and financially, and while we know that one way or another we’ll be okay, we’re all still kind of struggling with the news and the timing. we just can’t afford it rn lol
we are more grateful for any kind of support/prayers than i can begin to explain, especially financially. it’s insane how many people have come to help us and love us during this entire journey with evanna’s diagnoses and her life thus far, and we appreciate all of you so so much. even if you can’t donate, just a reblog to pass the word around would be more than enough. and of course, prayers for the situation and what’s to come
thank yall i lov u”
Now that you’ve heard from her big sis, take another look at what Evanna (aka, Snart) is up to these days! WARNING: SHE IS A GIGANTIC HAM
First off, she’s a GREAT helper!!! Here she is making sure everyone is all packed and ready to GO
This lil NOODLE!!! her favorite place to be is outside in the sun, wiggling through the grass! If we’re completely honest this girl is DEFINITELY a chunky little garden fairy. And there’s so much in this great big world to explore!!!
Basic-white-girl-in-training, get this chicklet some toast for her avacado bread. (She’s hoarding them. Look at her she’s got like five in the cart. Unbelievable.)
I like to call this one “90’s Disney kid TV movie star" or “cheesin’ up the thug life” whichever you prefer
READ ‘EM AND WEEP BOYS
And last, but not least, even at the hospital for a very long day of procedures, she is BEAMING!!! She is the purest form of sunshine and an absolute gift from God above.
Oh and did I mention she dabs and says “YAAASS” A True Meme no doubt
But she needs your help. Her family needs your help. Your prayers and/or any financial gifts you can spare would be a HUGE help and an ENORMOUS blessing. Evanna “Snart” Joy is a reminder every single day that life is ALWAYS worth living to the fullest, and to make the most of every moment you have! ^^
TO LEARN MORE ABOUT EVANNA OR TO DONATE, VISIT linktr.ee/scotters2k1
(so sorry the direct link won’t work rn (tumblr mobile is a pain fam) but y’all can copy paste that)
AND PLEASE PLEASE PLEASE REBLOG. SPREAD THE WORD. SIGNAL BOOST THIS TO THE MOON. Share this tiny squishy bean and her love for avacados with the world!!!
The-Lounge 