Ben had an appointment with a pediatric ophthalmologist yesterday. He dilated Ben's eyes and performed a full examination. It is recommended that all children with hearing loss have an eye exam to rule out certain syndromes that are associated with both hearing and vision loss, which can be seen through retinal changes. We were overjoyed to hear that Ben's retinas looked perfect! Ben will continue to be seen by the eye doctor on an annual basis for continued monitoring, but for now we are so relieved and happy that Ben has perfect eyesight. We are anxiously awaiting the results of the genetic testing that our ENT ordered that tests for the three main genetic causes of deafness: Connexin 26, Connexin 30, and Mitochondrial abnormalities. Ben's blood was drawn and sent off several weeks ago, but we will still not hear the results for several more weeks. If it is determined that Ben has one of these genetic mutations, it will actually be good news because then we can rule out other syndromes and assume that his deafness is of an isolated genetic cause.
Also, Ben has a diagnostic ABR scheduled for Friday (also known as a BAER or an air, bone, and frequency specific Auditory Brainstem Response). Ben will be sedated for this hearing test which lasts a few hours, so please keep him in your prayers. While he had an unsedated ABR in February which gave us his diagnosis, it is recommended to have a sedated one at a few months older so that the audiologists can get more information. We will take both the results of the eye exam and the hearing test to our appointment with the cochlear implant surgeon at Johns Hopkins next month.
3 comments:
Congrats on the eye exam!! This is one of my biggest worries right now, that Aiden could possibly have a syndrome that not only affects his hearing, but his eyes. I will keep you all in my prayers that the genetic tests come back that Ben's loss is genetic. We're still deciding if we're going to do it or not ... our insurance won't pay for it or the hearing aids, so of course we chose the aids over the two.
I love that there's a family who is at the same stages we are. Thank you so much for sharing your story! If you'd like to keep in contact via email, mine is mjk_tjk@yahoo.com. Email anytime!
Hi, my name is Elizabeth and I write for www.cochlearimplantonline. My fellow blogger, Rachel (a bilateral CI recipient) and I, along with a team of other moderators interested in hearing loss, have developed a new website, www.deafvillage.com, and we would love to add your blog to our feeds list. Please email me at: elizabeth@deavillage.com to subscribe! We hope you'll join us... because "it takes a village to raise a child"!
I remember being so scared during the eye exam, but once we received the news that he could see fine, it put everything else in perspective!
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