Thanks to you diehards who even get on here over the weekend!

Dressing update: wound care took 1 hour today! We're starting to get the hang of it, and our neighbor Becky has volunteered to assist since our home care nurses couldn't staff Friday, Saturday, or Sunday. It's all good; I'd rather have Becky by our side than any stranger at such a time. NO new blisters today. Although, we figured out that Bella is doing a number on her self. We uncovered a wound on her left shin that we couldn't figure out where it came from. We thought maybe it was from our hands lifting her legs during diaper changes, but turns out, she kicks herself in the left shin with the inside of her right foot! Tomorrow, I will add shin guards.

Reflux update: Whatever it is Bella has, the formula didn't completely do the trick. When she either passes gas or poops, she screams in pain. That's really a drag, because she's pretty gassy. Really don't know what to do till Monday about that one. Also, she kicks and hits like a street fighter. She HATES diaper changes (kicks and screams till she's purple, and tonight was inconsolable even after a fresh diaper and a bottle. Is that colic? Ali was a saint in comparison!

Lastly, please go to http://www.youtube.com/watch?v=VZ9MXSCfMzw to see a tender video of Bella. It is her inner essence revealing itself amid the tumult her body is going through.

We love you,

Tim & Ang

P.S. Please purchase Bella's Song available above! Do it now! :)

Update 0601009 "25:55"

Did anyone get that?

Yup. It's 1:55. Ang is feeding Bella her bottle and we are rocking out to Mozart's Rondo Alla Turca on piano. Yeah, I know I used Mozart and ricking in the same sentence. That's what sleep depravation does to you.

The Good:

Bella's first pediatrician appointment went well in that she was 55-75% in each developmental area.

We started putting cotton balls in Bella's palms which is much healthier for her hands and little fingers to develop...keeps the natural shape of her grip while encased in tubing and socks.

Dressing changes look better and better each day...mommy and daddy are learning! It still took 2 houts though.

We tried a pacifier late the night before and it really helped with diaper changes.

The Bad:

Bella formed a giant new blister on her right elbow. The night before she literally beat the night before's blisters right off her face, so yesterday we tried to swaddle her. However, she is freakishly strong, a wiggle worm, and suffering from reflux on top of everything else (common in EB babies) so she spent most of last night wriggling and breaking free of her swaddle. We think the pressure of trying to pull her arm out caused the blister. It was little in the morning, but it almost wrapped around the back of her arm from one side to the other by 4pm. We had to lance it and drain it, otherwise it would just continue to spread. The way EB blisters work is that when a blister forms, it can just spread and spread because the pressure from the fluid building inside just continues to separate the adjacent skin. That doesn't happen to us; our blisters are restricted to their respective trauma site, because the healthy skin all around is bound down by that missing protein in EB.

Bella's reflux has made her REALLY irritable when awake (which is all night) She gurgles and hiccups in her cradle despite the 2" lift we gave her. Will try a higher incline later. Diaper changes at night have been wrestling matches which have also caused some new blistering. This evening, after the nurse left, while I was trying to change her diaper, she pulled her left foot COMPLETELY out of its dressing boot, which took three people to put on. I had to run next door to get our neighbor Becky, the OC public Nurse, to help feed Bella a bottle while we redressed the foot on the changing table.

Becky was reading my post from yesterday when I knocked at her door. Providence

Anyhow, we are tinkering with her feeding schedule, type of formula that is being used as a protein supplement for wound healing, EVERYTHING possible to try to make her comfortable. Oh, and diapers only get changed on a FULL tummy till Bella mellows out a little.

There will be good days and bad days, and there will be elements of good days in bad ones and vice versa.

Today, Ang had a good checkup and so did Bella. Today, hundreds of people prayed in their own way. for our daughter. Today, God placed my neighbor right where she needed to be.

Thank you all for visiting. It helps us soooo much. More than you know.

Please hold this vision with me: "One day Bella will look back and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it went away."

Download Bella's music!

Tim

First 24 Hours at Home

First 24 hours at home...done...still a roller coaster, but with moments of almost normal serenity!

Our in home nurse was great today. Turns out she'll be our nurse all week, and if not, only one more nurse will come by. I thought it would be like the NICU where Bella saw a different nurse every day.

Today was nice at times to be so peaceful, but Bella beat herself up pretty good with her own two fists today and her face has taken a beating. We also found out from the EB nurse educator that reflux is common in EB, so we installed a 2" elevation for Bella's head in her cradle to hopefully help with that. She just seems to have two main states...sleeping and crying. Normal right, but the crying is like turning purple screaming and almost inconsolable. Ali wasn't like that so it wore Ang and I out. Also the nurse had to leave to go to her other job in the middle of the wound care. Ang and I thought we could do the right leg and hands by ourselves, but you just need 6 hands to manage it and it took us pretty close to 2 hours to finish up. THANK GOD Nanny and Manny stuck around this afternoon; they helped care for Ali wonderfully during our first in home wound care session.

Gang, we thank you all for the continued prayer and support. We are pretty worn out right now, and really are carried by you.

Tomorrow: the first trip out to the pediatrician. She's already due for her 2 week check up...never mind the fits 12 days were in a hospital. Please pray that Bella tolerates the checkup well.

Please hold with me this vision again:

"One day, Bella will look back and say, "Yeah, when I was born, I had this rare skin condition. But when they brought me home from the hospital, it went away."

All things are possible through God.

Good night, keep the posts coming. Your messages keep us going.

We love you all.