a lil' of this and that

We had a great Thanksgiving here in Houston. My mom, dad, Anna, and Kelsey came in town to celebrate at our house! It was a relaxing few days with the fam.

Luke has been doing great! He has 'slept' through the night for 10 nights in a row. (by slept I mean...some nights he still cries but I have not had to go in there once...he will cry himself back to sleep! yay for me being "mean" :)) His appetite has INCREASED since the night sleeping! This is great news for any baby, but especially for our special one! :) He has not cried ONCE while taking the bottle in the past 2 weeks! He is still spitting up a lot with quite a few 'total bottle throw-ups." We are hoping this is due to his reflux and not EB. His total ounces per day are where they should be. Now we are back considering putting off the scope again. It is still on the TCH schedule, but we are able to cancel up until the last minute. Like I have mentioned before, Luke WILL have to be scoped at some point due to his disease. The doctors need a starting point because most likely he will be scoped more than once in his lifetime. We just can not let ourselves say yes to something that could potentially make things worse for a 3 month old when he is thriving like he is. The scope procedure can be done pretty much anytime so we are thinking about waiting until he shows more signs of needing it now that he has been doing so well. We were told that Luke will need to prove himself...well...with the BIG hand from our BIG God and all of the people covering him in prayer, Luke is showing us all how strong his little self is and how much of a fighter he is! Greg and I are amazed at how much his eating has improved from just a few weeks ago. Thank you from the bottom of our hearts for the prayers.

As far has his blistering goes...they are still popping up rapidly. The pictures show the ones that are healing on his face. He also has 3 small ones on his legs and still has the usual ones on his fingers and toes. I am praying the ones on his legs do not get worse. I DO NOT want to have to mummy wrap him. It makes me sick to think about his EB getting that severe. Dressing his body will be VERY time consuming (the derm. told me it can take up to 2 hours if his body were to be covered with blisters!) The reason for the wrapping is to prevent infection and reduce pain. So far he is doing great. Nothing looks like it needs to be covered. We just keep the ointment on them and pray a lot! :)

I'm sure many of you know that all firsts are special with a new baby. This was an extra special Thanksgiving with Luke here to be a part of it. We have SO much to be thankful for.