amommysjoy: Update and Videos

Good Morning... I am up at the usual 8:30, while my precious son sleeps on. Maybe he'll wake up at 9:30, maybe 10:30, or sometimes even 11:00. Mind you- he doesn't go to sleep until almost midnight and gets "broken" sleep every single night. So, I'm sure he's just catching up. But I am so thankful for this "morning time" to myself.... I can drink my coffee, get his medicines and feeding ready, catch up on my "EB baby blog reading," and sometimes (brace yourself) I even get to blog myself!! (on a good morning).

Tripp has been doing well. Not awesome... but not bad. His eye is still very swollen and looks really bad in the mornings. By evening time, he can open it a little better. I do think it feels better, though. He has been SO miserable in the mornings when he gets up. I don't think it's his eye as much as it is all of his other sores. It's like he is stiff as a board in the morning- like he is in extreme pain. Everything just has to hurt, you know? It takes him pretty much all afternoon to "wake up" and want to play. Most of the morning just consists of rocking him in the rocking chair and snuggling close- NOT complaining.

But we have GOT to get this child walking- his poor butt/legs are so red and raw... and the other day--- O MY WORD. We were undressing him for bath/dressing change and a piece of gauze was stuck to a sore (well, this happens every now and then, but nothing I can't get off with some aquaphor and a little cry) but THIS was horrific. This piece of gauze was about a 1/4 inch deep into his wound. I was sick. The water didn't get it out, nor the aquaphor, nor the other 100 things we tried. So I finally had to just load a piece of gauze with a TON of aquaphor and pinch it off. It was heart wrenching. I DESPISE when this happens. But, the little ANGEL he is, was fine after that. I have brainstormed and brainstormed about how to cover his butt/thighs better, but just can't think of anything better than what I'm doing. He just gets pee all over his inner-thigh dressings. I change the mepilex/stockinette each diaper change in that area- but he's just miserable- it must burn his little sores so bad when he pee-pees.

EB mommies and daddies- any suggestions, I'd appreciate :) Thanks.

Anyway, no extra special news to report... BUT no really bad news either. So that is good:) Thanks for the prayers.

(And yes, I started this blog at 8:30, and finishing now... 12:40. Tripp requires my full attention!!)

Who's a Rotten Boy??