a special baby

What a day. Thank you for so many sweet comments on facebook and via email. I thought this would be the best way to let everyone know what is going on with our Luke.

On about day 4 of life we discovered a blister that had popped on Luke's heal. We thought it was possibly from the heal prick they do in the hospital, and that it had just blistered. Within about 24 hours, we started noticing blisters pop up rapidly on his hands and toes. After 3 pediatrician visits and 3 dermatologist visits, Luke has been diagnosed with Epidermalysis Bullosa (EB). It is a skin disease that he will have for the remainder of his life. You can google it if you want, but in a nutshell there are 3 types of EB ranging from mild to severe and Luke's is most likely somewhere in the middle. His body was not formed with the "bonding agent" to hold the layers of skin together like most people have. How did he get it? Either Greg and I carry the recessive gene (that we don't know of) or it was by chance that a cell mutated in the womb and left that certain gene out. If this is the case...the chances were about 1 in 100,000. God has a plan...He has to.

Greg and I will be doing genetic testing to see if we carry it. If so, Luke will most likely be an only child as we would not want to put future children through this. This is a lot to digest at the moment. Luke will be a special needs baby...anything that causes friction to his skin can cause a blister. (playing sports, instruments, crawling, etc) As of now, the blisters do not cause him pain unless they pop and raw skin is exposed and rubs on something. It is hard to keep a newborn 'still' :) Greg and I are learning how to care for the blisters...keeping them wrapped up and covered. (thank goodness cool weather is coming!) He also has a few in his mouth and throat but they don't seem to bother him. (the feeding issues are coming from tummy pains)

Today the dermatologist at Texas Children's did a biopsy of a blister on his elbow to determine the exact form of EB that he has. We are hoping it is more mild than they think it is. I have to brag on the little guy...with a needle of local anesthesia, biopsy, and 2 stitches, HE DID NOT CRY. yes, our 3 week old did not cry during all that...yet cried while the doctor looked at the blisters and during a diaper change! My first thought was that God was holding him during the whole thing being the Great Physician He is numbing the pain. He is home sleeping soundly now with a little red bandage wrapped around his 2 stitched in his elbow.

As Greg and I were leaving the hospital, it only took us seeing one other child with way more severe special needs to realize we have it good. So good. No one wants to watch their baby go through this. We are sad for him...that he might not have as much opportunity as other children, but thankful it's not worse. He is a fighter already and we love him so much. This is his normal...a new normal. Who knows...maybe he will prove us all wrong and get better! There is always hope.