Posted 2016-08-31T04:34:05Z

August 30, 2016 🔹 Home

WE ARE HOME!!

YOU, our prayer warriors, brought our baby home!!

We battled through nausea and vomiting throughout the day, but we were able to come home this evening and we are SO EXCITED! Besides the nausea/vomiting all things were good today. Our vitals were steady and there were no other concerns with us coming home.

We started our marathon of medication, and boy is there a lot of medication. Almost all of the medications go through Cole's NG tube (feeding tube) so we are able to administer them pretty easily. We did have to start our GCSF shots tonight as well (the ones that help him boost his neutrophils - white cells that fight infections,etc.) I had the luxury of giving the first shot while dad gave the like 85 other meds through his NG. 🙂 But all in all, it was all successful. We definitely have to figure out an organization system with all of these medications because various ones are given throughout the day. We had to set alarms to wake us up for the ones throughout the night (12am/2am/4am/5am) and the rest are morning, throughout the day and then evening. So pretty much we are giving meds around the clock. BUT, we shall not complain because we are giving them AT HOME!

We got our feeding tube hooked up successfully tonight so Cole is enjoying his bag of whole food. :-) We have to gradually work our way back up to full feeds so we'll have to monitor that and adjust along the way. Our hope is that he may get an appetite back and eat actual food. But at least he's getting his nutrition.

Yesterday was day 5 of this round of mega chemo so the remainder of the week is our "off" week where we try to build our body back up. We will have the Visiting Nurses of Lawrence come every Tuesday to draw labs from the Port which is great so that we don't have to travel for those. We will go to Children's Mercy every Friday (for now). Some Friday's will be just to the clinic for labs and treatment that day and others will be for in-patient treatment where we stay overnight, 2-5 nights, depending on which chemo we need that week. Of course, the schedule may change (probably so) depending on labs/counts and how the chemo goes. But our next 3 treatments are scheduled for now so we'll go the next 3 Friday's - Clinic day, 2-night stay and then 5-night stay. We don't know the schedule beyond that.

Hopefully the fevers STAY AWAY! We'd love to save some trips to the Children's Mercy ER, but if we have to go, we will, of course. We also MUST continue working on physical therapy - the body is weak and sore. Gotta build those muscles back and also recover from all the bone pain we've suffered through. But, there's more of that to come from these shots so it's just something we're going to have to work through during this whole thing.

We think just being in the house will absolutely help Cole build his strength as he'll feel more motivated to move around. And we need to "encourage" this...or rather, make him do some things for himself and get him moving around. Should we venture away from the house he'll need to wear the special masks we got while the immune system is down, but we don't think Cole will be going anywhere any time too soon. But we'd love to see if he might get out this weekend for a bit.

I can glance over at the sweet, sweet angel sleeping comfortably while I type this, and it just warms my heart more than I can express. Our AMAZING support system prayed Cole home, but at the end of the day, the credit goes to Cole, our incredibly strong, courageous fighter, and to Him who has held Cole in His hand along the way. We must give praise and thanks to He who has made this happen.

That's enough for now as it' been a long, exciting day and we're pooped (two of us are already sleeping). 😊

THANK YOU ALL FOR THE CONTINUED THOUGHTS, PRAYERS AND SUPPORT. Our wonderful support system, near and far, have helped us more than we can say. We still have a long road ahead, but we KNOW in our hearts that Cole will continue fighting and he WILL BEAT THIS.

We know that He will heal our sweet baby. ✨

Bless you all

#TeamCole🎗

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