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