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, August 25, 2008

Back in the Saddle!

That's what I felt like after I got home from Riley's most recent series of appointments (all in one day). I've made new friends in Riley's new audiologist and head and neck surgeon! We'll be seeing them often in the next few weeks and months!

Last week, Riley was referred in another hearing screening, which means he didn't pass. In either ear. He has tubes in right now, but neither of them are functioning, so we have an appointment for the doctor to remove the tubes he has in now, and then in the same day, they're going to replace them with new tubes. Riley also needs another ABR test. He had one right before we left San Diego, but the records aren't very conclusive, so the department here at UNC wants to redo the test. He'll be sedated, and they'll do an hour long test to determine if his hearing loss is due to nerve damage (which I know it is, since they figured that out in SD), and how MUCH hearing loss he has. At that point, they'll most likely fit him with hearing aids right away. The doctors here do not like to wait until these kids are in school to give them hearing aids. They're much more aggressive about it. So we'll see what happens.

We are also all set up with the craniofacial team here in Raleigh. It's time for his year check up, when we'll find out if and when his next cranio surgery will take place. I LOVED my craniofacial team in Cali. I've done a lot of research, and DR. Kawamoto and his team are really the best of the best, so if he does have another surgery we'll most likely want to do it there in LA, where his initial surgery was. But I don't have to even start thinking about it until his next check up appointment.

Riley continues in another day of speech therapy today! He is making great strides in his speech , and has started using three word sentences which is a HUGE milestone for him, in a really short amount of time!! My favorite new phrase of Riley's is "I lub you mom"! He says it randomly all the time, and I know he knows what he's saying! He just melts my heart!!

Please pray for his upcoming appointments! We're trusting God that He's healing Riley everyday, and building a great life and future for my sweet boy!!

5 comments:

Christian said...

Look at Mr. Growny! I love this picture of him- it makes me smile.

TK said...

I'm jealous. I wish Emmie could lub me. Very sweet.

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