9.19.06 Consultation Update

Hi Friends and Family!
We arrived home from LA at about 10:00pm last night.
The appointment went well, and was a an AWESOME experience.
As soon as we walked in to the "plastic surgery department" of the medical center, another couple and their 18 month old baby boy greeted us and asked if Riley was going to need plastic surgery. Come to find out, their son has the same thing Riley does. They were there for his post surgery, 1 year check up. He looked perfect!! Which was really encouraging to us! They told us about their experience with the doctor's we're seeing, and they told us some details about the surgery. They were very nice, and a total God send to give us peace before we met with the doctors. Our name was called right at 5:35pm and we were immediately introduced to the team of doctors that will be working with Riley. There were 10 doctors who were all professors at different universities around the US. Steve and I had to pretty much move out of the way as they started to assess Riley. It was a really cool feeling to know that all of those doctors were there to see Riley. I was so overwhelmed that I even asked the surgeon if I could videotape them assessing him! He was happy to let me do so! Our surgeons name is Dr. Henry Kawamoto. We found out that he was actually the first doctor to succesfully separate conjoined twins here in California. You can look him up on a google search.

So...here are the major details of Riley's consultation in Los Angeles yesterday. Hissurgery will happen sometime between December and February. We had a fewoptions about which kind of surgery he is going to have. One involves asmall incision, and one year of helmet therapy, and a chance that theymight have to do another surgery if the helmet does not shape his head correctly. The other option (which we chose) requires a bigger incision, all the way across his head. They will reconstruct everything with one surgery...un-fuse the scull, reconstruct his forehead and reposition hiseye socket. With this option, he won't have to undergo helmet therapy. This seems to be the better option for Riley, and is what the doctors
suggested. Steve and I will go up to LA a few weeks before the surgery to give blood, as Riley will need at least 1 blood transfusion during the surgery. He will spend 3 or 4 days in the ICU.

We see a Geneticist in October to find out if Riley has Pfeiffer Syndrome. If he does have this syndrome, it's a very mild case and he'll probably show no real signs of it, but the reason we need to find out is because if he does have it, he has a 50% chance of passing it on to his children, and it tends to mutate and get worse as generations progress. The doctors we saw yesterday didn't think he was a "Pfeiffer baby"...so that is good...although, they DID find some other anomalies on his body that may suggest some kind of genetic issue. We'll see as our journey continues!

Thanks for your prayers. God is definitely moving.
I'll inform everyone of the date of the surgery when I find out.