Riley's Diagnosis

Riley James Faiai is my 2 year old son who was born with Craniosynostosis and probable Pfeiffer syndrome. When he was 5 months old, Riley had surgery to reconstruct his skull. This blog is the journal, story, and timeline that has helped me put Riley's Journey into words. Browse around the archives and feel free to contact me for more info or support! -Lauren (lfaiai@gmail.com)

Tuesday, September 18, 2007

UPDATE 9.18.07

Today was nothing less than a day of complete SUCCESS! Great drive, great company for the ride (thanks Cat!), and the best part...a PERFECT prognosis for Riley!

I totally prepared myself for the worst today, but remained confident that whatever the outcome, God completely had his hand on Riley's life and future.

We waited in the doctor's office for about 7 minutes before the doctor came in. I thought we were only going to see one of the doctors, but to my surprise, the ENTIRE craniofacial team that performed Riley's surgery was there! They ALL remembered him! 8 doctors entered the room and before I was even greeted, they all looked at Riley and back at each other with astounding WOW'S! Dr. Kawamoto who is generally emotion-less, had a big smile across his face as he assessed Riley's head. I could tell he was pleased. They said a quick hello to me, and then proceeded (just like our first visit) to talk to each other about Riley's various abnormalities in his hands and toes, trying to figure out which syndrome he has. I did my best to translate medical language and sneak in questions as they talked to each other. They are VERY pleased with Riley's progress and the shape of his head! Here's what I was able to gather during our visit!

1. NO MORE SURGERIES for Riley's skull!! This is HUGE! They told us Riley would possibly need some facial reconstruction when he's 6 or 7 years old depending on how his face forms. That's usually standard procedure. But his skull is great and I was really happy to see the doctors as pleased as they were with Riley's progress!

2. Dr. Kawamoto DID diagnose Riley with Pfeiffer Syndrome. The syndrome is gnarly if you look it up on the internet, but thankfully Riley has a very mild case, and will most likely not have the developmental defects of Pfeiffers. This is GOOD NEWS!

3. We'll have another check up with the team in a year from now just to make sure Riley's still on track!

Thank you so much for praying. God answered in a BIG WAY today!

1 comment:

Becky said...

Praise Jesus!
That's so awesome. He is the sweetest boy and so cuddly. That's wonderful news.