Riley Update 10.17.06

Today we had an appointment with the pediatric dysmorphologist. We didn't find out much other than the fact that Riley does have some kind of syndrome. He either has Pfeiffer syndrome or Saether-Chotzen syndrome. Both are pretty much the same. Riley had blood drawn today so that we can eventually find out which syndrome he has. The doctor told us that it doesn't really matter which one he has because whatever it is, it's definitely there, and we'll kind of have to treat it as he grows. Right now all that he needs treated is his craniosynostosis (surgery date set for January 3rd, 2007). After that, we'll just kind of have to see how everything goes, and then determine, whenever something looks wrong, if he'll need treatment. Here are some of the issues that could come up with both syndromes.

Saether-Chotzen Syndrome
-fusion of the cranial structures which sometimes produces an asymmetric head and face
-low-set hairline
-droopy eyelids (ptosis) and/or widely spaced eyes
-"beaked" nose and possible deviated septum
-Abnormalities of the fingers and/or toes --
-intelligence is usually not impaired

Pfeiffer Syndrome
-skull is prematurely fused and unable to grow normally (craniosynostosis)
-bulging wide-set eyes due to shallow eye sockets (occular proptosis)
-underdevelopment of the midface
-broad, short thumbs and big toes
-possible webbing of the hands and feet

Right now, Riley is developing mentally at a normal rate, and none of these possible symptoms are noticeable if they exist. We're praying that they don't exist, and that Riley will bounce back after his surgery and not have any issues as he gets older!
We serve an awesome, powerful God and are waiting with great expectation that HE can and will heal our sweet son.

Next, Riley has to see an opthamologist and an audiologist. I will update if any new info comes from those appointments.
If anyone out there knows about Pfeiffer or Saethre-Chotzen email me at lauren@journeycom.org

Thanks for your continued prayers!
Lauren