Daylon had his surgery at CHOC last Friday and everything went REALLY well. CHOC has really upped their EB game thanks to our wonderful nurse, Tanya Kamka (we met her last November when Daylon was in for an infection) and Dr. Grant (his GI Dr.). We came in a day before so everyone could prep for the surgery (ie: meet Daylon, go over what his limits are, etc.) We were so lucky that he didn't blister at all on the site. He was released Sat. afternoon. His Gtube/Mickey Button has always been a little oozie but on Wed. night when I sat him up his opening started to drip. We went back to the hospital today and they repaired the ring balloon (It keeps the Mickey Button from popping out of his stomach). We're glad to report he's doing much better now.
We leave for Minneapolis on Sat. and Daylon starts his work up on Monday the 17th. He'll have tests and appointments for apprx. 6 hours a day for 5 days. Caleb will have his lab work and EKG on the 18th.
Our next big task will be flying with 5 children, ages 5 and under, 12 pieces of luggage, 4 carseats and two strollers. Ha, Ha! I'm laughing already! We're going to be that family...I just know it! We'll keep you posted!