
Today has been one of those days that has been spent mostly in fits of laughter as I enjoyed a shopping trip to Lubbock with a couple of friends. There probably should be some sort of law about the three of us getting together, but sadly no one has made or enforced such a law yet. And sadly, Lubbock probably paid the price!!
Our trip started with a trip to University Medical Center and with three Master's Degree having women getting lost at said hospital. We went to visit a friend who recently had a baby who was placed in the neonatal intensive care unit, more on that in a minute. We walked into the hospital, which at that point was more like a ghost town. The only people we saw were the people who walked in ahead of us and then for the next 10 minutes we walked around with not a clue about where we were, where we were going or how to get there. At one point I even said we should have left a trail of bread crumbs because I wasn't so sure we were going to make it back to the car. Not only did we find the car, but we were able to get a hold of Stephanie who directed us to the correct entrance and then walked us to the NICU.
This was my first trip to a neonatal intensive care unit and in all honesty it's a trip I could have gone my whole life without making and been just fine! Stephanie had her baby on Tuesday or Wednesday of this week and soon learned that Zachary has Epidermolysis Bullosa Simplex, a disorder that causes blisters to form on his skin if anything rubs on it. We stopped by the hospital to see mamma and baby Zachary and getting in was also an experience unlike any I've ever had. Stephanie literally had to teach me how to wash my hands before going in to see him. We stood and washed our hands for 3 minutes and if you don't think that's a big deal, stand at your bathroom sink and scrub for 3 minutes and see how you feel. After scrubbing and scrubbing I was sure we must be about done and when I looked at the timer on the sink it flashed in red numbers: 42 seconds! Seriously?! I've only been doing this for 42 seconds?!! I won't have to wash my hands for a week now because they are so clean.
When we walked in the babies were in their incubators and I tried not to gawk, but this was all so new to me it was hard not to. There were some teeny tiny babies in there and I just wanted to hold and love on all of them. After rounding a couple of corners we got to Zachary's little nook and I watched as Mom talked and cleaned and loved on him. He's such a sweet little boy with gorgeous eyes and I'm sorry he's going through this, but he seemed to be taking everything in stride. He was warm and dry and Mom was about to feed him, just what every baby needs. So today's picture is of Zachary -- the little trooper of the day. Stay strong Stephanie and you keep being cute and cuddly Zachary, it was nice to meet you!
Hi, I'm sure that you are going to be getting a lot of comments on this post. Most of us with EB have a google alert for it. Please let Stephanie know if there is anything that she needs, any information etc to PLEASE contact Geri (EB nurse) with DEBRA (Dystrophic Epidermolysis Bullosa Research Association) (www.debra.org) - Geri is GREAT and will be an invaluable resource for both Stephanie and Zachary.
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My daughter and I have EB Simplex and i'd be happy to talk to Stephanie about EB! I was wondering how they already know he has EB Simplex? Biopsy usually take 1-2 weeks to come back. Anyways I have a web site with TONS of info and tips on EB and babies with EB, www.garrettshouse.org/guide I hope Stephanie will find it helpful!
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