Thursday, June 18, 2009

Post op checkup

Yesterday we took Kate for her post op checkup with Dr. Jacobs. Since she's no longer an "airway patient", we no longer have to be see in Airway Clinic at the main hospital. We took Kate to the annex facility in Princeton, which was only 50 minutes from our house as opposed to 2 + hours. Needless to say, we were pleased before we even stepped foot in the place. The appointment was fast: her site looks great, keep it covered with sunscreen and come back in 6 mos. Great doc, see ya then. But he did ask about her hearing and when it was revealed she hasn't had hearing test at CHOP in over a year, he decided to do one right then. Thank God the audiologist was available and it was a relatively quick and painfree 30 min. She did 3 tests: the first one Kate wasn't interested in doing at all, the second one she failed. They put probes in her ears and measured her ears response to sounds. It showed no response. YIKES! But the 3rd test was behavioral (put the block in the bucket when you hear the beep) and she passed. Left ear tested completely normal, right ear showed mild loss. So we'll continue to test her hearing every 6 mos until she's 6, then yearly after that. Remember, Kate has Sticklers Syndrome, and progressive hearing loss is a symptom of Sticklers.

Otherwise, Kate's perfectly fine.

1 comment:

Lindeblad Family said...

Hi there, I've followed Kate's story since you first created this site and you shared some info with me when I reached out on the PRS Network site. My name is Jenn and my daughter is Maya. She was born with PRS and has Sticklers Syndrome. Our experience with PRS was much different than yours and within about 4 months had resolved itself, never had a jaw distraction or trach, had palate surgery at 7 months. We however have faced more long-term issues with the Sticklers Syndrome. Maya has all of the symptoms to the extreme. She has hearing loss and wears aids, her vision is -20 (basically blind without galsses or contacts), she has the facial features common in SS (flat nose bridge, protruding eyes and other craniofacial issues). Now Maya is 13 months and doing really well. She is happy and growing and doing all the things she should at her age. We go to PT every other week (used to go weekly)and have hearing therapy once a week, plus one other dr. appt about every week but its slowing down a bit now. Anyway, the reason for my post is that I'd love to keep in touch with regards to the Sticklers connection we both have. There's not a ton of mom's with SS babies and all of our symptons. I saw that you just had Kate's hearing checked, that's great. Have you had her retinas looked at? This is a big issue with SS if you didn't already know that. Thanks for sharing your story. My email is if you'de like to communicate that way. Thanks!