PWS Update

I guess it's time for a PWS update on Lauren. These pictures were taken a few days ago. This respresents a "dark" day for her birthmark. Like I've said before, just the one side of her face is ususally darker than the other. The picture quality is not great because I was purposefully trying to get pictures of the birthmark, which I rarely do, and trying to get an almost 2 year old (!) to be still is pert near impossible.

See what I mean?

We are scheduled for our next laser treatment in September. We have not seen the fading we had hoped to see from this last treatment. But truly, the shade changes daily. PWS is very tempermental.

And here's my prayer request:

We are pretty set in our decision to enroll Lauren in a clinical trial here (at ACH). This trial uses new technology to "map" the stain and determine the size of the blood vessels affected by using a computer program. It also uses a different laser than the Flash Pump Dye Laser. It uses something called a ScleroPLUS. Basically it just adds a cooling effect before and after the laser is used on the skin to cool it down. It does not leave those little "burn" dots like the Flash Pump. From what I've looked for, on the internet, I've seen really good results with fading from this type of laser treatment for PWS. They have used it on infants before, so it's not like Lauren would be a guinea pig. The study is primarily for the computer imaging program. They just so happen to be using a different laser (that the doctors agreed had an overall better result).

Here's the dilemma... with the clinical trial, a test patch is necessary prior to the actual procedure being performed. Typically they do not use anesthesia for the test patch. So we have to decide whether or not to pay out of pocket (NOT the real issue here) and have her go through the not eating or drinking anything for 6 hours before the test and recovery ORDEAL. Or we can forgo the anesthsia and have them do the test with her awake. I'm not sure how long the test would take, but my guess it that it would be over in a matter of 30 seconds to a one minute. And then we could go home. The problem I have with doing anesthsia is that it becomes an all day thing, and she is NOT a happy camper coming out of it. I think that might almost be worse than the little pop of a laser on her face for a minute.

And it is just nerve-racking trying something different. But we have said since the beginning that we would do everything we could to help the PWS fade before she is old enough to notice it... and those days are quickly approaching.