Guest guest Posted April 8, 2011 Report Share Posted April 8, 2011 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...
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