Friday, June 19, 2015

Update on the Chloester & Info for Benefit Garage Sale

We'll start with update first, bullet point style...

  • Red rash on face lately and some of her body. This is mainly due to the fact that her red blood cell count is high {effect of needing heart surgery soon}. If it gets worse, there's something {drug} I believe they said we can try, but we're hoping it clears up soon and red cells go back down a bit.
  • She's still having trouble tolerating her feeds. She should be back to 48ml // 21 hours, but she's only at around 38ml. Anymore than that and she gets spitty and puky. Hoping that we can continue to s~l~o~w~l~y increase again soon. New sized Mic-Key button for her g-tube has helped a bit, but still, full feedings are a work in progress. 
  • Continuing lasix. She's still puffy off an on in her hands//feet//face. The fluid in her lungs seems to be clearing up more and more, but still trying to get it off the rest of her body. 
  • She hates her IV. The one in her scalp when she was first admitted stopped doing its job. The second one that vascular team placed in her arm just yesterday has already been worked out by a cute pink stay-puff. The one they got in this morning to replace that one is now not flushing. Vascular needs to put a new one in {again}. The vascular team knows her well though from out patient labs, so she chats with them all about her day when they come by. 
  • She's a sleepy bug when she's sleepy, but when she's awake, she's even letting us sit her up and she's FULL of smiles!
  • Bronch is tentatively scheduled for this coming Wednesday. That will help us know if she has the trach ring. News we've been waiting on for a year now. If she does, then most likely repeat the BT shunt to get her bigger//stronger for the combined trach reconstruction and Glenn. If no trach ring, then most likely will get the Glenn. Problem is it's all up in the air until we get this scope done. Not sure if we'll come home end of next week and wait till heart surgery is scheduled and keep eagle eye on her at home, OR...she's showing enough signs that we might just stay put. I hate to even utter the words, but the cardiologist who rounds on Chloe while on this floor has said them two if not three mornings in a row: All of Chloe's signs {fluid//red skin tone//need for 02//possibly even not tolerating feeds} point toward heart failure. While my heart panics each time I say that, I also know that this is just our way of knowing she's ready for her next shunt//next surgery. This does NOT mean end all, this means time for next surgery. But it's still hard to gulp those words down our throats. 
  • Kids are doing amazing with us. We got to enjoy a day out at the zoo with them last week, getting ahead on home school stuff {"school stuff" as we call it}, hanging as a family in Chloe's room, playing in the amazing playroom basement of the new Ronald McDonald House, and enjoying the child life playgroup each weekday morning for an hour on Chloe's floor. Our days are actually very structured with all of the above and the kids have adjusted amazingly well. We hope to keep them with us as much as possible this summer. As Isaac said as we got off the elevator the other day, "Besides, we're a family!" :)
  • Please also pray {with the above list} for Alan as he'll travel back home tomorrow so he can still lead on Sunday, then back that afternoon. Please pray for safe travels, for rest, for good memory to remember the list of things we forgot the first time ;). 
Some very sweet friends and church family are blessing us by putting on a benefit garage sale to help us off-set the costs of things like medical bills, gas//food//car repair for these trips back and forth, needs while we're in KC this summer and so on. We were incredibly blessed and humbled by this generous offer to organize all of this for us. The garage sale info is listed below...

>Benefit Garage Sale for Chloe & Family will be at University Christian Church (UCC) in Manhattan, KS next Saturday, June 27th from 7am till 1pm. It will be held in their Family Life Center. Drop off for donations will be Friday June 26th from 12pm-8pm. If you'd like more information about donating items, please leave a comment below with your first name and email address and I'll forward you the information from the organizers on what and how to price items. 

>Join the Chloe Gerling Benefit Garage Sale/Bake Sale on Facebook for latest info.

>Lastly, they will also be selling t-shirts that I (Chloe's mama) got to design for the volunteers which will now also be sold at the garage sale for $15, sizes Youth Medium through Adult XXL. The design of the shirt is at the bottom of this post. The colors teal and grey represent Chloe's trisomy ribbon for Mosaic Trisomy 22, and the other version with the pink represents her heart journey. 

>>>And on behalf of our family, we thank you ALL who are working so hard behind the scenes to organize and put this benefit on for our family. We are blessed, humbled, and feel so, so loved on this journey. Not a day goes by that we are not thankful for each and every one of you, and the way you remind and teach us all what it is to be the hands and feet of Christ. THANK YOU.<<<

If you're reading this blog and would like to help in some small way but do not live in or around this area, this same print {without Chloe's name} is available on my Etsy design page available to purchase and download the jpg to print and frame for your home. Here's the link: Chloegirl Designs on Etsy for $10.

If there's enough interest, this one might be available as well:

Or other versions for download from Etsy for print:

*Images above are not allowed to be reproduced in any way. JPGS of prints available on the Etsy link above. Copyright 2015 Chloe Girl Designs. 


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