Wednesday, September 30, 2009

It's a Tert!

This past Sunday something wonderful happened. Something that occurred only once before. Something worth celebrating, but not for the squeamish! Joshua passed  a somewhat solid stool. It was just amazing. I said, "Look Joshua, it's a turd!" His face filled with pride, "A tert! There's a tert in my Pull-up!" Don't think I didn't consider taking a picture or saving it somehow! But, I didn't, relax. This was huge for us. I called Justin in from outside to show him and we hugged,wiping the tears out of our eyes. Only once before did he have something like this happen. All of his stools are always so loose. It breaks my heart. Well, we haven't had this experience again since, but hopeful there will be more "terts" in our future. Yeah Joshua!

Saturday, September 19, 2009

Cultivating Talent

Okay, maybe if I commit to this publicly, I'll actually go through with this. I think it is so important to encourage children's God-given talents. Not so sure if my children's is art, but mine was, so who knows? So, anyway. I'm am vowing here and now to not discourage my boys when they ask me if they can't paint, now matter how big the mess may be, or how much I don't feel like getting everything out.  Oh if I just had more space... At any rate, enjoy Joshua's first attempt at painting. I think it's beautiful!
Thank you Cook Children's Child Life Staff for opening my eyes to this.

Thursday, September 17, 2009

Where is my Bedtime?

Recently Joshua has shown lots of interest in potty-training. To all our surprise, things are going quite well. Watching as he beams with pride, my heart just breaks. The extent of his chronic digestive issues are so much more evident when not contained in a diaper. It never quite hit home until the first time I witnessed it. But, Joshua just as pleased as can be, loves the independence. Then comes bedtime. Four times last night between 9:00 pm and 12:30 am he calls me in the room so he could go potty. So we begin the process of turning off TPN and Lipid pumps, sterilely securing the end of his tubing. Turning off his feeding pump and unhooking tubing at the g-button. He scoots down off the bed, heads to the bathroom and pretty much takes care of things all by himself. He cleans his hands, puts his pull-ups back on, and gets back into bed. I clean off his end of the central line, re-connect the TPN and Lipid tubing, and reset the pumps. I reconnect his feeding tubing and turn his feeding pump back on. This is all well and good, until an hour later when we repeat the whole process. And then an hour after that. And then once more. What to do? I certainly can't discourage him using the restroom. But I have to wonder, how much of this is in his control?

Who knew poop could run someone's life!?! I'm desperately in need of sleep!

Tuesday, September 8, 2009

Home, Finally

Well, as of Sept. 2nd and after 6, count them, 6 infections Joshua is HOME! Poor baby had to go through 5 IV sites and countless blood draws. He finally has decided being in the hospital isn't all fun and games after all! He's doing alright. The IV antibiotics have been rough on his system. Today was the last dose, so hopefully things will get back to "normal" What's that?