Blood coagulation results

Auggie's blood was checked again for various coagulation issues - all of them have improved!!  His platelets are stable at 138,000 - it's on the low end of normal, but stable.  His platelet function test came back normal as well as his CBC numbers. His Factor VII deficiency has improved from 60% to 85%. His PAI-1 improved from 3 to 4, which is still low but not in a dangerous way.  He does not even need to wear a medical ID bracelet and might not need medication before having dental surgery in October.

Hearing loss

Auggie is getting hearing aids! Our new audiologist, contrary to his old one, believes that he could benefit from wearing a hearing aid.  He has bilateral sensorineural hearing loss at 800-2,000 mhz.  We hope our late discovery hasn't affected his speech - we'll be seeing a speech pathologist affiliated with the clinic in a few months - Yes, we have to wait that long!!  He has had speech therapy for 3 years but no one ever thought his hearing was compromised.  It's always good news, bad news on this roller coaster ride.

9 month Post-op MRI Results

Auggie's 9 month post-op MRI looks good - his CSF flow has improved and the syrinx has decreased by about 60% since pre-surgery. He will need another MRI in 12 months.  I'll post images shortly.