update

I took Luke to see our favorite of our doctors this morning, Dr. Bree his dermatologist. Luke's little body is looking extra rough these days. I counted over 10 new blisters on just one of his arms. I can't figure out why these popped up all of a sudden. He isn't even crawling yet! One foot is still looking awful. It will not heal and it seems to hurt him when I drain and dress it. Sometimes I just stare at his little innocent body and say over and over..."it's not fair little buddy, NOT FAIR!" Why why why in the world is this precious little baby covered in these ugly wounds???? sorry, had to get that out! Most of the time Luke is content during the 'after bath routine' (diaper cream, diaper, body scan for blisters needing to be drained, draining, antibacterial ointment on suspicious wounds, aquaphor on everything else, wrapping his feet, lotion, then finally PJ's on!) but when he does cry, Greg and I just stand there wanting to cry right along with him. He still amazes us with how tough and PATIENT he is! I pray he stays this way as he gets older and squirmier. I have recently heard of two other EB babies who are given prescription pain meds during dressing change and bath. I am thankful we are not there. THANK YOU JESUS!!

Anyway, Dr. B took a good look at Luke today and of course Luke hammed it up for her. He smiled and laughed nearly the whole time! She thought his arm might be bad because he got bit by a mosquito or something. She said that anytime Luke gets a bug bite he will most likely blister. We have been outside a lot lately. He might have a a little staph on his foot sore. Overall it was a good appointment and nothing looked too scary. Dr. B was impressed with Luke's growth. He is definitely beating the EB odds for size! I think it's because he got a head start at birth weighing in at 9 pounds 4 ounces! She reminded me to keep him extra hydrated as the weather is getting warmer. She said swimming will be great for his blisters this Summer! You will know where to find us! I'm sure I have mentioned this before, but Dr. Bree runs a camp in Texas specifically for EB kids! Kids can start going when they turn 8 but sweet Dr. Bree told Luke he can come when he is 7! It is a normal Summer camp for kids except there is an entire nursing staff trained in EB care to do all of the dressing changes etc for the kiddos! It warms my heart to think about all of these kids getting to do "normal" fun activities and still get the care they need. I can't wait for Luke to be a part of it.

Friday is Greg's 39th birthday! I love him so much and can't imagine life without him. Our journey is special. God hand picked him for me and to be Luke's daddy. He brings me so much joy. Happy birthday my love!

Saturday we are going to the Garrett's family lake house for the night. We are looking forward to a layed back getaway! There will be 4 couples and 5 little ones. I will be sure to post lots of pics next week!

stay tuned...:)