Winston Doctor Appointment

Tuesday we had our first appointment with Dr. David at Baptist hospital. I am still just overwhelmed at all the information we learned. Some of this was very good news, and some was confusing news...but all in all it was an informative appointment. Let me see if I can condense the whole appt for times sake.

First of all we were told Conner does not have a port wine stain. His birthmark is a hemangioma. It is a benign tumor that will rapidly grow for the next 12 to 15 months and then taper off and begin regressing. Also the "infection" that has been seen by 5 doctors, is not really an infection at all. Don't get me started on how helpless that feels to know that your child has been misdiagnosed by 5 different doctors and that the treatment I have been doing for 17 days now was probably hurting him. Anyway, the sores that are on his face are the result of the skin breaking down due to tumor growth. Basically the tumor is growing so fast that the skin is not able to keep up with it. Or at least that is the closest I can come to explaining it. Right now they are incredibly concerned about keeping the ulcerated area from becoming infected. That means if you happen to see me out don't be surprised if I am hiding Conner. The best course of action is to keep him quarantined from everyone so he doesn't get anything into the open area.

The doctor was also very concerned about his eyes. With the hemangioma being so close to his eye there is a possibility it can cause a "lazy" eye. In an infant if their vision is blurry, the infant will start ignoring that particular eye and in turn lose the use of it. Thankfully when they sent us on to a pediatric opthamologist in Greensboro, Conner was given an eye exam which was almost completely normal. YAY!!! He has a slight astigmatism but nothing to be concerned about at this time. We will return in four months.

Starting December 12, Conner will return to Baptist for his first of many laser treatments/surgery. Normally doctors take a "wait and see" approach, but because Conner's is already breaking down they want to treat it aggressively.

The really great news was that this new type of birthmark is not in any way associated with the syndrome that causes brain damage. So no more CT scans! We feel very blessed to have Conner in our lives, and although right now I cannot see the big picture and I definitely do not understand why God has chosen this path for us, I still can only say that we are blessed. As I have been researching these birthmarks I have seen some truly heartbreaking pictures and read some stories that made me want to just hug these little babies. It could be so much worse. So I am going to keep a positive attitude and remember that it is HIS hand and not mine that is leading our family right now.