Bubba's daddy here!
I'm a high school teacher, an artist, a musician, and a writer, and I can't think of the first thing to write about on this here blog. But I suppose it's to share the experience of parenting a child with EB. So here goes.
The biggest thing lately has been physical development and speech development.
Bubba is now 18 months old and has yet to walk or speak. He can stand while holding onto something. He can "cruise" -- that is, walk from point A to point B while holding onto something. But he hasn't yet stood on his own, much less walked on his own. He makes noises -- grunts, groans, whines, cries -- but has yet to form any actual words, save for "mama," "papa," "bubba," and the occasional "dada." We have both a physical therapist and speech therapist, and they are very helpful, but Bubba just hasn't made the "big leap" yet toward independence.
His wounds are primarily on high-impact areas: elbows, knees, feet, hands. Because of the ungodly high heat here in Georgia, he has some blistering on other parts of his body (back, chest, tummy). We've been trying to find some suitable shoes for him, so he has a LOT of blisters and wounds on his feet and toes. He has toughed it out despite.
One of the biggest concerns as of late has been the coming school year. Melissa and I are both teachers, so come August Logan will be attending the same daycare as his big sister. For the past couple of years we have been blessed to have Ms. Vicki, who nannied him and another boy, but this year we're moving him into a larger setting and praying that he'll do well. We have the same concerns as other parents, but as any parent of a child with EB knows, these concerns are more nuanced: Will he fit in? What happens when other kids notice his wounds? How will he feel when he can't get up and run around like the other kids? Will other parents raise concerns? We will deal with it, and I'm sure we'll do fine, but still, the concern weighs heavily on our hearts.
Another big development has been a "crazy" idea I had the other day. The idea is to get some of my photographer friends in a car, drive around the southeast United States, take pictures of kids with EB doing their thing, then come back to Atlanta to put on some art shows to raise awareness (AND MONEY!) for DebRA. (The families would get prints free of charge, obviously.) But... I need some help getting in contact with folks in the southeast US who have kids with EB. I need blogs, email addresses, anything. This project is literally two days old and I don't have everything ironed out, but it's something I believe in and want to make happen.
In the meantime, Logan will be stacking blocks, laughing at our tickles, and grunting for MORE FOOD! MORE FOOD! MORE FOOD!
I will be posting some pictures soon... stay tuned.
