Not really "cute" photos tonight. Jonah took had a bad fall around 5:30. We were downstairs setting up for dressing change. Jonah has a little chair down there he rocks in. One minute he was rocking and the next he was turned around on his knees, backwards on the chair and tipped the whole thing over. He fell straight on his face. For a normal kid, it probably wouldn't have been a big deal. He didn't fall far. But for Jonah, well, here's the damage: skin off his nose, blistered upper lip, the area between the lip and nose became one huge blister, skin off his cheek all the way up to his eye, and a new raw spot on his forehead (the one in the center). He also blistered on the inside of the upper lip and is very swollen there, but he won't let me look at it. These photos are unedited.
I really try to stay positive. And I know as far as severe forms of EB go, we have it pretty good. We're not dealing, so far at least, with trachs or corneal abrasions or digit fusing and contractures. But man, one little fall does all this?! It breaks my heart.
Please pray for sweet Jonah's face. I'm especially worried about him rubbing it at night and continuing to reopen it and for his upper lip. His lips take FOREVER to heal, even when it's just a little one on the corner of his mouth. But his whole upper lip? This is going to be a nightmare. And the shallow part of me is so sad that all of our Christmas photos this year will be tainted with the evidence that we let him fall and smash up his face. :(
And while you are praying, please pray for Tripp and Daylon also. Tripp is having a very rough road with no signs of consistent improvement. Daylon was supposed to go back to CA tomorrow, but he's had brain surgery with some ups and downs with vomiting episodes, fevers, and blood pressures, so he can't go yet. His mommy is hoping they'll get to head home on the 23rd, but Daylon needs to have some turn arounds for that to happen. Please keep all our boys in your prayers.