Posted on April 11, 2017
This post has been in the works for a week! We had our amazing friends(FAMILY) from New York in town, and we just focused on making memories and enjoying them!
I also need to give another huge thank you to Lone Star Rocker and our #TeamRiverTribe for giving River the most amazing treehouse I've ever seen. I know as he declines, this little cabin will give him a safe place, his own place to just BE.
The last post I mentioned the possible infection, and it WAS a bug he's had before. He seemed to kick it on his own, but since we could easily treat it at home, we did.
However now, just days after finishing that antibiotic, he's showing signs of another infection. It's not slowing him down though! His mood is amazing, his pain is controlled, he's HAPPY.
Our Palliative team came to the house last week, so we could reassess our plan. And just kind of see where we are. They are surprised he's doing as well as he is, very surprised. That's River though, right? Won't read the book. He is still on TPN(IV nutrition) as well as formula feeds via his NJ tube. They do not believe he will come off TPN, unless his body starts to not tolerate it, then we would just give fluids for hydration. He is still not eating more than a few bites a week, and rarely drinks. They don't expect that to change either.
That visit was harder than I expected, I'd hoped maybe they would say that things are NOT as bad as we think. Or maybe Ashton Kutcher would jump out and tell us we'd been Punk'd. River is a strong little boy. No one doubts that. But our time is limited. There is no time line, he is not on hospice yet. We're enjoying the good days, and just trying to survive the bad days, to get to the next good day.
He was supposed to go on his Make A Wish trip on the 19th, to Thomasland in Boston. We've had to postpone/cancel again. We aren't confident he could handle the travel AND enjoy himself. With the possible infection, should we travel? I think we just want to focus on staying close to home, our care team, our support system. He also doesn't want to leave the house most days, and his feeling and comfort level is what's important.
On the 29th we are having a benefit, the 2nd Annual #Morethan4 bash. He may be 5, but federal funding is still less than 4%. I will never stop fighting for more. Our kids deserve more. If you're local, please make plans to come celebrate River, and have some fun with your family. If you'd like to help out by volunteering your time, or a prize for the raffle, please email Denise @ [email protected]