Have a prayer request for those who pray if you don't mind. My son goes in for surgery on Wednesday. This surgery will change his life forever if it works. Many of you on here know my youngest, Nik, is Deaf-blind. Though the blindness has not set in yet. Won't until the teen years. So we feel very compelled to get his ears working right so that he may have the ability to hear. His hearing aids now do not help. The surgery is cochlear implant surgery. It is 3 hours long. They drill into the skull to place a device adn a magnet. The external processor will be worn a month after surgery due to healing and such. Activation is Dec. 9th for him. So, if you would please pray for a positive outcome and a smooth surgery process for him this Wednesday, Nov. 12th. Surgery is at UNC. We are told will we indeed be able to come home the same day. With most my kids I ended up having to spend the night so very happy about this being same day surgery. Last year we had a major botched surgery done on one of my daughter's so this is a little nerve wrecking. That and there is so much at stake for him. Thanks in advance for the prayers for Nik. Take care, stephanie--mom to 7
Will pray for him, Stephanie. And may God bless you and your husband abundantly for being such wonderful parents to your special children. :grouphug:
Stephanie - I will be keeping you, your family and especially Nik in my prayers before, during and after this surgery! Blessings to all!
I somewhat know what you are going thru (if you ever want to chat privately) I am there for ya. Your son will be in my prayers for the next few days and for a fast recovery. Ro
On his records, it states Ushers. We don't think he has Ushers due to the auditory neuropathy dx as well. However, there is one other kid in the nation that we are aware of that has AN as well as Ushers. Crazy, huh. The opthalmologist that saw him said he has all the traits, characteristics and markers of RP. This guy has been doing this for over thirty years so I guess he knows his stuff. However, SO hoping he's wrong secretly. YOu know what I mean. told the RP won't really start setting in until the teen years. Typically, they said RP combined w/ Deafness means Ushers. However, that is not always the case. Either way, whether there's the genetic connection to the ushers or not, he's deaf and going to be blind most likely. Same outcome, just one would have a genetic connection and one doesn't. UNC genetics will not test him for Ushers. URGHH. They have to have a definitive RP dx even though its their people that tested him and gave him the dx. UNC will not make the dx "official" until he has an ERG done. UNC will not do an ERG on peds patients so we are stuck in the middle here so to speak. We've gotten a second opinion from Duke and she is thinking he may not have RP. Obviously, we like her idea better--LOL. However, she's rather new at this. Just don't know but have been begging for 2 years now to get hte ERG done. It's a field of vision test. Now, the Deaf-blind program people came to our house years ago and did a little test on him and said, yes, he definitely seems to be losing field of vision and does show signs of RP. He's very sensitive to light. Some days he can tolerate the sunlight, others, he just can't. Takes time fo rhim to adjust from one set of lighting to another. Has balance issues at times(sign of ushers). Night blindness..just can't tell yet. Yet, the kid can see planes in the sky. Go figure! His vision for distance is great but close up...horrible. Hope that explains it a little. RP is a part of Ushers but "officially" we don't have the dx. Just on papers for his medical files at UNC. Got to go. Thanks for asking though. And please, if you kno wanything about RP do let me know. Stephanie--mom to 7
Are they doing both ears on wednesday or just one ear? Not that it matters either way ... prayers are prayers. I will pray for his cochlear implantation and that everything over the next month runs smoothly. UNC does good work with them. I know someone who had one ear done during the summer. She'll go back for the other ear later on.
God Bless both of you. Are you in contact with the Foundation Fighting Blindness? http://www.blindness.org/ (Go to the Ushers link) I'm sure they could find someone who could make a definitive diagnosis. Here are some clinical trials regarding Ushers. Please let us know how everything turns out. We will all pray for your son. http://clinicaltrials.gov/search/condition="Usher+syndrome" Found 5 studies with search of: "Usher syndrome" 1 Recruiting Natural History and Genetic Studies of Usher Syndrome Conditions: Retinitis Pigmentosa Syndromic; Congenital Deafness; Usher Syndrome; Retinitis Pigmentosa and Deafness; Progressive Hearing Loss; Retinitis Pigmentosa Intervention: 2 Completed A Genetic Analysis of Usher Syndrome in Ashkenazi Jews Conditions: Usher Syndrome; Retinitis Pigmentosa; Congenital Hearing Impairment Interventions: Procedure: Audiogram; Procedure: Electroretinogram 3 Terminated Study of Dietary N-3 Fatty Acids in Patients With Retinitis Pigmentosa and Usher Syndrome Conditions: Usher Syndrome; Retinitis Pigmentosa Intervention: 4 Completed Study of Usher Syndromes, Type 1 and Type 2 Condition: Retinitis Pigmentosa Intervention: 5 Recruiting Molecular Genetics of Retinal Degenerations Conditions: Retinal Degeneration; Retinitis Pigmentosa Intervention:
Just the right side for now. UNC is extremely conservative in their approach to this. They ahve only done 5(okay, 6 now) billateral implants there. They've done several hundred unilateral. Would would have loved bilateral but answer was no. If this works, it will be done hopefully a few months later if progress is documented w/ the one side. And trust me, I'll document everything--LOL. We have a great doc according to everyone. Can not wait for it to be over and done w/. Thanks for your concern. Stephanie--mom to 7
Does your doctor look like Doogie Howser? Not the actual Neill Patrick Harris ... but a really young doctor that is actually a bit older. My mom's friend called her doctor .. Doogie Howser because he looked like he could have been in his late teens.
