I learned a few EB lessons this month. We've had a month of eye troubles..abrasions, infections..We've gone through four different eye drops for allergies, antibiotics..lubrication...And we still had an infectionn, dry eyes, itchy eyes..and injuries from trying to get them all in playing with his lids... He had alot of green discharge for more than 4 weeks ...even on the antibiotic drop. I couldn't figure it out and the eye doctor just kept prescribing them. One day I decided to culture the discharge (it was a big green glob). Turns out he has two different staphs growing in that eye..each with different resistances. The eye drop he was on was one that came from a family of antibiotics one staph is resistant to. It only cleared up the one staph and the second one was still in there. We then had to add a second drop, erethyromycin (it was about the only antibiotic that it was not resistant to) and boom....eye cleared up. So, lesson learned..you can culture eye discharge...and there are different drops that contain different antibiotics..if your eye infection does not clear up in a few days with those broad spectrum antibiotics...try another family of antibiotics ..sometimes there is more than one germ in there and there are apparently lots of different types of staphs with different resitancies. Wish the lightbulb in my head would have went off a few weeks earlier. Anyway, the scratch was gone two days and he was feeling much better. The eye still had a few dry patches on it even though we use lubricating ointment and drops everyday several times. Turns out that you should use a perservative free eye drop (the ones in the individual vials) because the continual use of perservatives daily in the bottled ones over time irritate the eye and cause you to rub it..in return causing it to dry out rather than lubricate. That's why he was developing dry patches even though we really lubricate them. The dry patches make it easier to scratch the eye. Learned lots about the eye and EB this month. Really, is there any complication Casey will be spared...even the rare never seen before in dystrophic seem to find him.
He also went to his first "friend" birthday party this month. He was so darned cute and had so much fun. It was outdoors but not a terribly hot day..He swung at the pinata, ate some cake and played on the swingset.. He even wore the superhero cape. (it was a superman/batman type party). He loves to pretend..My older son was more of a realist...He'd never wear the cape..he'd say.."I'm not superman, I'm a boy." Casey threw that cape on, put his arms up and spent hours chasing his friends pretending to be superheros. It was a day of well, "Normal kid stuff for casey" and no irreversable damage had been done..not even a blister. Wonder why I worried about all the horrible things that could happen all week leading up to it? He had such a good time. The kids from school are awesome with him. He couldn't be luckier on that end. You just can't NOT like Casey. He had his end of year ice cream party this week. They all made flag shirts. They sponge painted some stars and for the stripes they used their handprints. I just love his school and his teachers..Now, I was a bit nervous about painting his hand and all and getting it all off, but lesson number two this month (as long as there are no major open wounds) ..If you want to paint a child with EB's hands, first coat them with vasoline, rub it in, and then paint the hands..we made handprints on the shirt and simply wiped off ALL the paint easily.
That's about it from our house...Remember to slow down and count your blessings. Once you sit down and think about it, you'll see that you have so many more than you ever realized.....
I'll leave with some pictures of our three little angels....
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