he HAS to prove himself

...that is what the doctor told us on Thursday. Luke's biopsy came back from the second reading and his exact type of EB is now labeled "inconclusive." (it seems like we have been waiting on this phone call for FOREVER!) The first reading said his condition was pointing toward the Simplex type of EB, however, after a second, more detailed reading, this does not seem to be the case. The good news is that it is not necessarily pointing toward the Junctional type either. (this type is SEVERE) At first I was really disappointed to not know what to research and what to expect from his disease, but my dad said it best, "I believe us not knowing his exact type is a blessing. God IS going to heal little Luke, performing a miracle, and knowing all of the details are not necessary." I am going to live on this for a while.

I have been saying what a fighter Luke is....well, now he just has to prove himself. We are just to monitor him closely and make sure he continues to gain weight. There is no cure or 'treatment' for our baby's disease...just wound care and a close eye! Day by day this disease is NOT going to win...it can't. We are just getting to know each other :)

I talked with our pedi. on Thursday too. After realizing that he is eating MORE but not BETTER (he still cries a lot during feedings) we are to follow up with our new GI doctor (THANKS TO THE GARRETTS) in 2 weeks. Dr. J said that there could be scar tissue building up in his esophagus from his reflux. This can act as a stricture obviously effecting his breathing and eating. He thinks that the GI doc is going to want to do the scope procedure sooner than later. Please pray this is not the case. We are NOT ready for this. We hope he starts taking bottles better at most feedings. As of now, he has about 2-3 out of 8 "peaceful" feedings a day.

On another note, we are currently visiting my family in Longview/Dallas. Luke has gotten to meet so many of his family members. He has gotten some good bonding time with his auntie Anna, Kippy, and Papaw. I think I went 2 days without changing a diaper! Thanks Anna and Mom. Unfortunately, he has had the worst couple of days. I think he must be out of sorts being away. He cried nearly the entire day Saturday and a lot on Sunday too. I know the traveling will get better with age...it better! I am so thankful to have such a prayerful family. Luke is being lifted up by so many...SOO many. For those who don't know, my dad started a worldwide ministry a few years ago. www.christtotheworld.com I am pretty sure Luke and James Thomas are being prayed for all across the WORLD! Amazing. Dad said that if Luke and James Thomas are healed with a miracle, his team of writers from the ministry are all set to write these boys' story....that God can still perform miracles just like He did so long ago. What a time that will be...that people will be brought to Christ through our sweet babies.

I have not captured many pics while being here. I will take some today and post them soon! Sorry for the long "wordy" post. :)