Glad today was only a day.
Too fried mentally and physically to expand too much tonight.
New big blister on left thumb. Imagine you had a blister that went from the back of your fingernail to the base of your thumb and that it was as wide as your thumb and as high as the thickness of your thumb. All in one day. Fingers are tough because we have Bella's hands wrapped 24x7 and can't see new blisters forming until the next day's dressing changes. We remove yesterday's bandages with anticipation to see if wounds are getting better, and in the case of fingers, if dressings are staying on her tiny, wiggly, lubed up fingers.
Thus the game of EB, one step forward, one step back.
THe good is that DEBRA is flying a volunteer out to spend an entire day with us later this week. She is bringing tons of information, dressings, diapers, and wants to observe our dressing changes to offer advice....we get her ALL DAY for ... um ... free. This DEBRA group is pretty amazingly funded and organized to provide such personalized and in-depth attention.
The volunteer also wants us to get the Stanford Biopsy results by the time she arrives so she can counsel us on which form Bella has. So, focus your intentions and prayers that the test is done and we get the results tomorrow and that the results are delightful. We need a miracle. We are praying for the version of the disease that children grow out of. Thank you for focusing on this tonight/today.
Okay. need sleep. Bless you all.