Tuesday we took Landen to Flagstaff to the CRS clinic (children's rehab services) he was scheduled to see the ENT with audiology but as usual we got there to find there were several other people who wanted to see him. We started in the booth with the audiologist which of course as I've been saying for months didn't work out. This is the third time they have tried to do a booth test on him in the last year and in none of them has he shown any sort of response. So they decided to perform a tympanogram which measures the pressure in the ear. It showed that there was a slight problem that could be wax or fluid. Landen has never had fluid or any sort of ear infection but he has always had wax in his ears. I told this to the ENT but what do I know I'm just his mommy. She is convinced that he needs tubes in his ears even though when she looked in his ear she couldn't see anything because there was so much wax. So she told me she was going to schedule him for surgery to get tubes put in. I was against it so I made a concession since he needs a new ABR (auditory brain response.. its how we test his hearing since he is unresponsive to a booth test) I agreed to let the the ENT do and exam under anesthesia and remove the wax while he gets his ABR done and if at that time we find that he does have fluid behind the eardrum we will make a decision whether to go ahead with tubes or not.
After that we spent a few more hours seeing various people. We saw the PT, the dietitian, and a speech pathologist. They like Landen to see these people at CRS once a year or so to discuss his progress and make sure he is getting the services he needs back home. It was as always a long visit for the boys who don't like getting stuck in the exam room for hours at a time. But I have to say they do very well.
After that we went to visit our friends in Flagstaff and as always it was a nice treat to be able to talk to them and see the amazing progress that Ezra is making!
Shortly after his second birthday our Little Landen was diagnosed with a Proxisomal Biogenesis Disorder (or PBD) a rare yet fatal genetic disorder. It hasn't been easy for us to share and this site has been created to help us keep everyone updated with doctors news, information and what is going on in our journey. We know we have tons of family and friends support and love. We hope and pray that we are blessed with many more years to watch our sweet baby grow!
My Little Landen
This blog has been created to help others keep up to date and follow our journey. I will post as often as I feel there is new news in his condition or our family be it good or bad.
Saturday, February 11, 2012
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