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 04, 2007

Sleep Tight Riley!


Riley had a sedated BAER test done today (hearing test). The doctors haven't been able to get an accurate reading of his hearing since he was born, so in order to do this extensive test, Riley was sedated for 3 hours this morning. The roll away crib, the cords and red glowing toe brought back all too many anxious moments Steve and I faced when Riley had his surgery back in January. Needless to say, I definitely rested easier going into this appointment. I didn't really have to worry about things like Riley's skull being cut open! (lovely thought, I know). After about a tablespoon of some cough syrup type medicine and 10 minutes, Riley went from completely coherent to sleepy dream land. The nurses monitored his vitals while the audiologist tested his hearing. He slept all the way through the test and woke up as soon as we started taking all of the monitors and wires off of him. The test was a success, which is great! the results however revealed a whole new season of challenges for Riley.

I guess it's actually nothing new to him, considering he's been hearing the way he has since he was born! Riley's right ear is fine! Perfect in fact. So that's a BIG plus!! His left ear however did not do well at all. There is fluid in his left ear so that is one factor, but with this test, our doctor was able to read his hearing from the bone attached to the nerve in the ear, bypassing the ear canal and fluid. The doctor said in "my terms" (they don't use percentages) he has a 40% hearing loss in his left ear...that's WITHOUT the fluid in the way. Taking in consideration the fluid in his ear now increases that percentage substantially...to almost 100% loss.

The doctor did tell us that this hearing loss wouldn't directly interfere with his learning ability because he'll hear well enough out of his right ear. He'll have tubes put in his ears in the next couple of months to get rid of the fluid. They'll do another sedated test and then if the doctor's guess is right, he'll be fitted with a hearing aid for his left ear. The reason he'll need a hearing aid is because it's important that Riley can localize sound. Like when someone is talking to him at a distance he needs to know which way to look!

All in all today is was a success. All that kept entering my mind were those 5 days we spent in the hospital really scared to see our boy in pain 8 months ago. I even told the nurse, "I feel really confident that Riley's hearing or lack of it won't stop the AWESOME plans God has for this boy!" She agreed! Riley's been a little nauseous since we've been home, but that should go away in another hour or so! Please pray for Riley in whatever ways you feel led! Thank you!

2 comments:

Sarah said...

God has such a plan for your entire family, including sweet, precious Riley. What a trip you guys have been on...

:)

Kristy said...

Lauren after reading this last night I wasn't sure what to say. After praying about it I felt God staying he choose you as parents and you are the perfect people to have this son. God has you prepared you for even this.