Puke & Things:)

 

Trending with our continued confusion, Sunny's "pukey weekend" came a week early.
Monday, she couldn't keep anything down and even after we emptied her stomach via g-tube, she was repeatedly woken by her nausea for most of the day. It was miserable. Physically & emotionally exhausting to watch her be so uncomfortable without anyway to truly help. I called for backup pretty quickly into the morning, and Chris was fast to finish up things at work and return back to us. 

She's been having these spells of nausea roughly every 2-3 weeks, and this last time we attempted feeding her a simple, broken down, hypoallergenic formula to see if that helped. She was on a measly dose of 4mL/hour through her g-tube in addition to her IV nutrition, so when Monday turned out the way that it did, it just brought on more questions. 
It seemed odd that it would happen again so soon even though she was on the smallest amount of food she's been on in a long time. Yet again, the blood tests left us no clear culprit, so the team is going to try treating her digestion & motility. HOPEFULLYYYYYYYY these couple of changes will improve whatever is going on. At this point, it's really the only thing between us being able to go home. 

During our discussions this week, I had mentioned to some members of the team that I thought our window for going home was getting small. Nobody had every really given us a timeline for when she'd need surgery, but I think 8-12 months was mentioned at some point. That's exactly where we are now, but the doctor on this week said that she's not showing any indication that her heart needs the repair now, and said he wouldn't say that the window is closing.
    That was very reassuring to hear, as I was getting myself to a place of peace around not being able to go home before the procedure.  Just being home together as a family and have a "normal" day would be incredible, but I also just reeeeeally want Sunny to meet our two dogs. Brumby & Killarney's worlds have been wonky for a while, and I just so dearly would love for them to be able to meet and sniff the reason why:) 


Sunny's just been such a trooper, and is always bringing such joy to everyone around her. It really is so crazy to witness just how much this little girl - who is VERY frugal with her smile budget - touches so many people. A couple nurses refer to themselves as Sunny's Aunts, a respiratory therapist claimed Sunny as her Godchild, one of our favorite Environmental Services worker calls himself Sunny's "crazy Uncle J.R.".....it's just truly awesome to experience.
When the doctor and I were talking about Sunny's surgery timeline, he said something about weighing pros and cons of doing surgery sooner rather than later, and I said that a pro of doing it sooner would be that one of Sunny's favorite nurse practitioners, who's retiring in a few months, would still be here. She was in the hallway and didn't hear me, but he told her and she immediately replied with, "Oh, you'll have my contact information - No, you will be sick of me!" 
And then there are just SO many friends and relatives making the trek to meet sweet Sunny girl, pray for her, or just taking the time to check up on her via texts, asking siblings, reading the blog etc. 

Prayer requests:
- Sunny's digestion will be happy with the changes and we'll be able to get back on track with feeds.
- Things to work out so that we'll be able to go home in the somewhat near future. 


Thank you so much. The fact that people are STILL reading this blog and praying for her/us is humbling. It's been a long, drawn out event, and we're grateful for you walking through it with us. 

Love,
Chris, Alyssa & Sunny

"Yes, Hello? To whom it may concern, this onesie was designed by someone with fruit confusion, thank you."

Live private concert from Papa

Knocked her right out. 

At least Sunny thinks I'm funny

Sunny finally got to meet one of her long-distance bffs

The after tiny-tots crash from all the fun(& overstimulation:)

Post PT workout, Sunny was outttt

Her trusty goose, always there for support ever since she was a teeny bean.

FINALLY fell asleep in her new stroller after a day full of tummy being so upset that she couldn't fall asleep:(

Sunny just loves her Papa

Snuggles with her pink goose & dino