It seems as if Rafi has grown up so much in a week. Jackie started toilet training Rafi and she is really getting it. I’ll save you the gory details. Suffice it to say that Rafi is taking to her potty like a fish in water. After two and a half long years, we are finally able to have Rafi go to sleep on her own. We no longer have to pat her back so she can fall asleep. All it took was a bribe. We told her that when she was a big girl and went to sleep on her own, we would get her a tricycle. Well, it took about 2 days for Rafi to fall asleep and earn that tricycle. See below for her first tricycle ride along the Mississippi river.

There is really big news that I am hesitant to discuss but it is impossible not to mention. Dr. Tolar, after looking at Rafi’s electron microscopy of her 100 day biopsy, emailed us with some pretty exciting news. He thinks he sees evidence of an anchoring fibril. If confirmed, it would be the first scientific evidence of this procedure working on Rafi. Like all recessive dystrophic epidermolysis bullosa kids, Rafi lacks the anchoring fibrils that holds the dermis to the epidermis. Well, hopefully, this is the first evidence of her developing some. That would mean that she is producing colllagen VII. Words can’t express how exciting this is for us. Anchoring fibril growth at day 100?

Can you just see the smile?

Into a Bigger World

Taking a break from the tricycle and walking down the Mississippi