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)

Monday, November 13, 2006

11.13.06 Update

Riley had an appointment with an audiologist and the head/neck specialist this morning. If you've read earlier posts, you would have learned that Riley has some sort of hearing loss. He hasn't passed a hearing screening since he was born...he's had 4 screenings done. The doctors say that he has to hear a certain number of frequencies to pass the test, and he just barely fails it everytime. From what WE can tell, he's hearing pretty well. He reacts to our voices and is cooing and giggling like normal, but for whatever reason, he just can't seem to pass these darn hearing screenings. The head/neck specialist led us to believe that Riley's surgery in January should correct this hearing loss. There either may be fluid behind his ear drum or there might be pressure bearing weight down making his ear canal very small. Either way, they scheduled a BAER (brainstem auditory evoked response) test for Riley which might give us a little more detail about what's going on with him. That test will be done on the 28th of this month.

Riley also has an appointment with the optomitrist and opthamologist next month. They want to check his vision before and after the surgery.

Anyway... Thanks for your continual prayer!

2 comments:

Anonymous said...

Praying contiually for our precious Riley!! God created him for great things-I can feel it!

Praying peace for you and Steve,
Shannon

Anonymous said...

The BAER is the way to go. It's kind of hard for an infant to respond to screenings and try to obtain accurate results. The BAER is a very simple test. It's a non- invasive test, so it won't hurt. Not sure what kind of info they gave you on this, but they may lay him in a crib, or ask you to hold him in a recliner (you may even fall asleep for the test). It will score brain waves that control the auditory responses. It's hard to "fake" or "cheat" a BAER, since it documents brain waves. Make sure he's sleep deprived (which I'm sure they explained). Lauren, if you have this done at Children's here in San Diego. I know the audiologists that perform these tests. Hope to see you soon, missed you at the BBQ. Much love, Aunt Sue