Hi Jolie! Thanks for reaching out. I know how scary Google can be with so many different scenarios. I’ve found that Facebook groups offer both support and less scary outcomes, if you’re interested in joining others dealing with the same issues.

My daughter is thriving! Her hearing loss is stable, and she’s had no reoccurring issues since her surgery. She has an IEP for school. Although she doesn’t have any academic concerns, it allows for her assistive devices like an FM system and support from support staff. We’ve been really lucky with wonderful academic partners.

Overall, I’m grateful her story has reached such a mellow patch. I know how stressful and scary diagnosis is, so please reach out if you need anything. My email address is melanie@clementinecounty.com.

My name is Joli and I found your site because my 9-year-old son was recently diagnosed with a cholesteotoma and I was doing the dreaded Googling. We see the surgeon for a hearing test and next steps in a few weeks and I am a nervous wreck. Reading about your daughter’s experience helped so much, so thank you!

How is she doing? Do you have any thoughts now that you’re a few years out? Would love to chat. I’m a huge worrier and could use the mom perspective.

Best to you and your family!