Guest guest Posted April 9, 2011 Report Share Posted April 9, 2011 - like you, it's been a long time since I've commented on here. Our 7 year old Hailey has thanfully been able to take a bit of a break on her surgeries. We had to do some repairs in the right ear (ear drum repair) over the summer and her left ear where the c-toma was seems to be doing well. She is also a perfectly normal 7 year old. She still hates when she has to go into surgery but the kid can talk to anyone about surgery and the c-toma. I'm thinking of you guys, especially of Chloe - she seems to be an amazingly strong young lady. It's amazing the strength these kids have and how it overflows to us parents. I know in my case that's how I've been able to be as strong as I have been able to for our Hailey. We go back for a check up in a few weeks and we're hoping for more good news. we're thinking of you thake care From: thequeen.christine <thequeen.christine@...>Subject: Chloe's #14!cholesteatoma Date: Friday, April 8, 2011, 8:51 PM Hi, Old Friends, and Newbies!In keeping with my theory that most people do not post here when things are going well, it's been a while for us. Chloe is about one year post op from her 13th surgery for an especially evil congenital c-toma. We had a checkup a few weeks ago, then an MRI, and now we are getting ready for her 14th surgery. It is primarily a "second look" LOL:) since she has never had a surgery without residual or recurrent cholesteatoma. Her last eardrum graft could also use some repair, and we are hoping for another go at a working prosthesis. It was great when she had it working before. So you might think this sounds like a nightmare, but I can tell you after five and a half years of this, she is a totally normal eight year old, enjoying life! She has a great attitude and is such a delight to us! OK, so her vocabulary includes words like tympanoplasty/mastoidectomy, Total ossicular replacement prosthesis (TORP), and the names of too many drugs to count. She speaks fluent "anesthesiologist", and makes many of her own health care decisions. She says surgery is "no big deal" and as long as she has a few stuffed friends along and knows which flavor of popsicles are available, she hops up on the OR table and out she goes. Her surgeon has been great, and we are so thankful to have him along on this sometimes bumpy ride. It can be a very scary diagnosis, especially when it's your little child, but even with all the surgery, she still has good hearing nerves, and has been spared some of the more permanent potential problems. Just wanted to let those of you who know her story know that it's not quite done:)Blessings to you all! Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.