Luke's latest - 1 month old

A quick update on our boy...

We went to the pedi. yesterday to get his stitches removed and for a weight check. I thought he had gained for sure and would be well over 10 pounds...he was exactly the same as last week! ugh. At least he did not lose. Praise for that!

Due to his eating and continued tummy issues, Dr. J. called Texas Children's ASAP to get us in to see a GI doctor. He thought with Luke not improving too much after being on 2 reflux meds and a really mild formula, that the EB might be what is affecting his eating. We HOPE not. If that is the case, Luke will have to be scoped and with him being so little, this can be a dangerous process and could also cause blistering all the way down. We are scheduled on Tuesday to do a upper GI (where he will drink barium and be x-rayed) to see how much damage there is down his esophagus. We are anticipating damage due to his hoarse cry getting worse. After that, we will meet with the GI doctor on Friday and go from there.

Dr. B. (our dermatologist) called yesterday with the biopsy results. She says that his EB is highly favoring the Simplex type. We have been doing quite a bit of research on the various types of EB. Of the 3 types, there is not one that is necessarily better than the other. Each one has subtypes...some better than others. His biopsy is being sent to another specialist to see specifically what type of the simplex and give us more info. After discussing this with Dr. B. and letting her know Luke's condition as of now, she has called an Ear/Nose/Throat specialist and we are going TOMORROW! She seemed concerned that he is now wheezing a bit and that his cry has gotten worse. Respiratory problems can be linked to EB.

So now we have a team of doctors for Luke. (Pedi/GI/ENT/DERM) I have read this is normal for EB patients. We are praying to get the GI and respiratory issues squared away. These can be potentially life threatening. Thanks again for the prayers and numerous letters, emails, and comments. I am feeling a bit more at peace...knowing that nothing is in our control...it's in His. I love this little boy more and more everyday. He is quite the fighter and is already getting used to us taking care of his little hands and feet!