weight check and more

We are so thankful that our besties are home. Please please please continue to pray for them. This is a not an easy journey. They mean so much to us and it literally brings me to tears to see them go through this.

We went in for our weekly weight check and Luke has gained 8 OUNCES! He is now a whopping 10 lbs. 15 oz.! He is obviously eating MORE but still fights through a lot of feedings. I am still hopeful that this is the reflux causing the pain and that his reflux medication just isn't working that good...that the pain is not coming from any type of internal blistering or damage. As long as he is gaining, we can prolong putting off the scope procedure. We are trying so hard to take Luke's disease a day at a time. It's the only way. All of the doctors have told us that EB patients, especially babies, can seem to be doing perfect and can "turn on a dime."

We had been doing good with no new blisters and then a couple popped up yesterday( I know they are not going away, but after almost a week with nothing new, I can't help but to have hope. We are so thankful that they are still mostly on his fingers and toes and every now and then on his elbows and knee. I am praying God will continue to protect his little face and organs!

Most of you follow the Garrett's blog and have read what she wrote about the GI doctor at Texas Children's that is willing to take over Luke's case...GREAT NEWS! He knows about EB, but more importantly, he said that the head of the GI department would be the one who would be doing the actual scope procedure and he happens to know even more about EB and has done it before on EB patients! This is very comforting news for us because soooo many doctors are not familiar with this rare disease. (our pedi says this is the first and most likely the last case of EB he will ever see) I can't say it enough...GOD IS DOING SOMETHING HERE! I don't' believe this happens by coincidence. Also, our pedi. happens to know these doctors too and told me that they were great! Speaking of pediatricians, I have to say that I am very impressed with ours and the entire practice. They are all (5 in the practice) proclaimed Christians. Both Luke and James Thomas go to this practice and both of our doctors have called to check up on us and told us that they are praying for our boys! It is refreshing to be in a city of 5 million and be in the hands of caring, personable doctors. Let me tell you, Luke and now James Thomas are popular babies with Bluefish Pediatrics!

I am calling the dermatologist today to see what the hold up is on Luke's biopsy. We are supposed to be getting the final diagnosis on the type of his EB soon...more on that later. UPDATE: right after I typed this I got a text message from our pedi. Dr. J. YES, you read that right, a TEXT from his cell phone letting me know that he called Texas Children's this morning to try and get the biopsy results for us and to give Luke his love. I know God has put us in the hands of good doctors. Praise Him.

Thanks again for all of the love, support, and prayers. I always smile when I hear that someone is praying for our sweet baby! Gotta run...Luke is starving!

PS..THANKS TO AMANDA YOCUM for the sweet 'prayer buttons!'