Luke gets his first C+

We went to our pedi., Dr. J, yesterday for a weight check and discussion on Luke's eating. It seemed like we were doing so much better with his eating after we got home from the hospital. He would eat about 3-4 oz. per feeding. The last few days have gone downhill. It seems like most of his feeding he is only taking about 2-2.5 oz. and is still fighting almost every one. :( Dr. J says that Luke should still be gaining about an ounce a day. He only gained 4 ounces this week...a C+ according to the doc. We have been trying to put it off as long as possible, but it is time to see the GI doctor at Texas Children's. Luke should be going uphill, not down. Dr. J thinks GI is going to want to scope him ASAP. Who knows what they will find. Supposedly a "normal" baby with severe reflux has some eating difficulties and an irritated esophagus...give this to an EB baby...yikes! Luke's tissue internally is just as sensitive as externally, therefore, constant acid irritation can cause big problems including a potential build up of scar tissue down him thus making meal time really painful and challenging. I asked Dr. J what he thinks would happen if this is what is found. He explained that sometimes a patient might need to be on a feeding tube (GI button) for a while to give his insides to heal. Of course I want the best for Luke and for him to be pain free...but a FEEDING TUBE seems so scary. He would have to go to therapy to keep remembering how to eat! We will just cross that bridge when/if we get there. I am waiting on Dr. J to call and let me know when our appointment with GI is...I am supposed to find out today. More on that later.

We also visited the pumpkin patch yesterday with our friends. Mandi and Avery went, Julie with Jacob, Hannah, and Elizabeth, Ann with Hannah, Ellie, and Benjamin, Autumn with Oliver and Wyatt, and Lindsay with James Thomas. Afterwards, Julie had us over to her house for a yummy lunch and pumpkin painting. She is so creative! Maybe next year Luke can paint one! We are definitely making this a tradition!