A few little tiny steps forward

It's slow going.

Jenson still has the tube down his nose to his stomach. We need his GI tract to "wake up" and start working again. He's still draining quite a bit of fluid from the tube into a bag (although better than the day before), and he can't eat anything or drink anything yet. They had to give him nutritional fluids through his port yesterday since he hasn't had anything to eat or drink since Sunday morning.

We're hoping by Saturday the tube will come out. They're planning to clamp it today and see if he can tolerate it without vomitting. The tube can't come out until then, and once it does he'll be limited to clear fluids the first day it comes out.

They are doing everything through his port... IV fluids to keep him hydrated, morphine, the nutritutional supplements, antibiotics, etc... but still had an IV in his right arm and had a brace on it so he couldn't use it. I started thinking, why do they need the IV? They're not using it and I can't imagine they would unless he needed another emergency surgery for some reason.

So I advocated for the comfort of my child and pushed a nurse to ask the doctors if we could remove it. They took it out and removed the brace, which gave Jenson the use of his right hand in addition to his left hand. We had visitors later that day, and he was pointing out the dot on his hand. He said, "Mommy take out". Awh, he's appreciating he got his hand back. Sweet little boy. Glad I pushed it.

We had to start making him take a few steps because that is what will help get his GI tract working again and the sooner it starts working, the sooner he can go home. It's very painful for him, so he's not at all excited about it and says, "No, go night-night" because he doesn't want to have to get out of the bed.

We did it on four separate occasions making him walk from the nurse to either me or Doug 3-4 times in a row. He hates it and is crying while he's walking to you saying "Go night- night. Go night-night." He thens gives a huge bear hug and his legs start shaking when you have to put him back on the floor and make him do it all over. Not fun, but very necessary so we keep encouraging him telling he did great and that the more he walks the sooner he gets to go home.

He had lots of visits today with both sets of grandparents and his uncle Brent coming by. He loved seeing all of them and would have then sit in a chair and read him books. He even let them smell his bunnies hat (which really means you're in the club as that is a way he comforts himself).

We're hoping today holds continued progress forward and hoping we get the biopsy results back... actually I kind of have mixed emotions on getting the biopsy results back because unless the histio cells are totally gone it's going to stir up another round of really intense emotions and we're still recovering from the events of this week.

Please pray for strength for all of us and continued healing for Jenson both from this procedure and from this crazy disease.

Kristin