November 4, 2008 mcfadyena

A local parenting and family magazine, West Coast Families, featured an article about Trey.

A local parenting and family magazine, West Coast Families, featured an article about Trey. Click on the thumbnail, left, to read the story.
We received a bit of information about Trey’s sleep study. Apparently Trey does not have as many episodes of deep sleep as he did during his test two years ago. However, Dr. Stockler does not know yet whether these changes have an impact on Trey’s sleep quality or whether they are subtle and without any consequence.
Trey saw his ENT doctor yesterday before his infusion and had another hearing test as well. His ear infection is gone, but hearing has not changed from his last week’s appointment (which is not surprising), so they would like to test him again in a month. However, this morning Trey woke up with a runny nose (Sadie got a cold last week), so I’m wondering if there’s any point. I guess we’re starting another cycle of reduced hearing, hearing tests, possible ear infection etc. Yuck.
Trey also had his Echo and EKG done yesterday. No results yet. Because Trey has had so many tests with concerning results recently, I will be meeting with Dr. Stockler to go over them: sleep study, cardiology, carpal tunnel syndrome.
This Friday, Trey got in on a cancellation to see Plastic Surgery regarding his Carpal Tunnel surgery. The neat thing is, it’s called a complex upper limb consultation, so instead of me meeting with one plastic surgeon, I will be meeting with between five and fifteen doctors, residents and medical students from plastic surgery, orthopedics and other departments. The reason they are doing this is so that I can get many opinions at one time and so that they can collaborate on Trey’s case. I think this is an awesome opportunity and I’m excited I can be surrounded by so much knowledge at once!


We want to hear from you! Send us your story so we can share it with the world. Every person and family battling Hunter Syndrome has a unique story to tell - one of bravery, resilience, and perseverance. We'll share all stories online here and on our social media feeds!