Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Although i have no answers for you--on any level really. As a parent, I am thinking of you. You and Robby are trying so hard to do something here, and you've met so much along the way. I wish I could do more than say I am thinking of you. bless his little heart. The cochlear decision is so hard to begin with, I know, and all of this on top of it. I know one way or another, it will work out. Deb Irwin Sherri Porter wrote: > From: Sherri02@... (Sherri Porter) > > Hello everyone, I thought I would update you on how things are going for > us.I wish that I could say that things are wonderful, but unfortunately > I can't.We still haven't seen any definate auditory responses from Robby > and he's still getting facial nerve stimulation and he only has 8 > electrodes programmed due to the stimulation.Yesterday we went to a > seminar for cochlear corp. and we met Robby's audiologists there.They > trie to do a test to see if Robby's auditory nerve was being stimulated, > but the test wouldn't work.It just kept coming up error message on the > computer and flat lines.We tried different computers , different speech > processors , tried punching different things into the computer, made a > million phone calls to cochlear corp..And now nobody knows what the > problem is.After Robby's surgery, in the OR they did 4 different tests, > and all of the results were great.So we don't know if somehow the > internal parts have malfunctioned between then and now, or if Robby's > just ignoring us.Although, I don't understand how a deaf child could > ignore sound.So now I am just emotionally exhausted.I need answers and I > need them now.Robby had hearing aids since he was two months old, and > now if the implants not working, he's gone three months with no sound.I > was ahead of the game having him amplified so young, and now at the age > that he's at for speech development,etc., this is a critical time.I just > don't know what to do anymore.He has been through so much, and I don't > know why this is happening to him.I love my son sooooo much, and when I > look at his sweet little face, I can't keep myself from crying.He will > be 16 months old on Wednesday and already, he has probably gone through > more than any of us will in a lifetime.But he is one strong, happy, > adorable little boy, so I hope I'm doing something right.If he needs to > be reimplanted, I don't kow what I'll do.The first time he ended up in > ICU for five days.I can't put him through that again.I guess I'll just > have to discuss that with the surgeon when and if that time comes.Well, > sorry this is so long.I just really needed to vent. > Sherri Porter > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 1999 Report Share Posted September 25, 1999 Sherri, This is so hard on you. Can Cochlear explain the problem? Sometimes other centers may be able to help. Were you able to have him assessed at another center (or is that taboo?) I send up so many prayers for him - and you! Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 26, 1999 Report Share Posted September 26, 1999 Sherri: My prayers are with you and Robby. My daughter also had terrible problems with her CI surgery - very different from Roby's experience - she rejected it twice and finally had to have the whole thing removed. It was the worst experience in my life. She was 4 yrs old when we did the CI and we fortunately had good communication (we use cued speech) - she was at all times able to tell us how she felt and what she could hear. Another thing that helped is that we kept her hearing aid on in her non-implated ear throughout the whole process - so she was able to hear some even as we waited for the implant to be turned on. My niece (now 11) was implanted when she was 4 yrs old and still maintains she cannot hear much if she is not also wearing her hearing aid in the other ear. Somehow, I know Roby will be fine when this whole thing is resolved. Amy At 11:03 PM 9/25/99 -0400, you wrote: >From: Sherri02@... (Sherri Porter) > >Hello everyone, I thought I would update you on how things are going for >us.I wish that I could say that things are wonderful, but unfortunately >I can't.We still haven't seen any definate auditory responses from Robby >and he's still getting facial nerve stimulation and he only has 8 >electrodes programmed due to the stimulation.Yesterday we went to a >seminar for cochlear corp. and we met Robby's audiologists there.They >trie to do a test to see if Robby's auditory nerve was being stimulated, >but the test wouldn't work.It just kept coming up error message on the >computer and flat lines.We tried different computers , different speech >processors , tried punching different things into the computer, made a >million phone calls to cochlear corp..And now nobody knows what the >problem is.After Robby's surgery, in the OR they did 4 different tests, >and all of the results were great.So we don't know if somehow the >internal parts have malfunctioned between then and now, or if Robby's >just ignoring us.Although, I don't understand how a deaf child could >ignore sound.So now I am just emotionally exhausted.I need answers and I >need them now.Robby had hearing aids since he was two months old, and >now if the implants not working, he's gone three months with no sound.I >was ahead of the game having him amplified so young, and now at the age >that he's at for speech development,etc., this is a critical time.I just >don't know what to do anymore.He has been through so much, and I don't >know why this is happening to him.I love my son sooooo much, and when I >look at his sweet little face, I can't keep myself from crying.He will >be 16 months old on Wednesday and already, he has probably gone through >more than any of us will in a lifetime.But he is one strong, happy, >adorable little boy, so I hope I'm doing something right.If he needs to >be reimplanted, I don't kow what I'll do.The first time he ended up in >ICU for five days.I can't put him through that again.I guess I'll just >have to discuss that with the surgeon when and if that time comes.Well, >sorry this is so long.I just really needed to vent. > Sherri Porter > >>All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 1999 Report Share Posted September 27, 1999 Sherri: They took it out permanently - they still have no idea why she rejected the CI - probably allergic to one of the polymers that coats the implant. Amy At 09:55 PM 9/26/99 -0400, you wrote: >From: Sherri02@... (Sherri Porter) > >Amy, thankyou so much.I didn't quite understand, does your daughter have >a CI now, or did they take it out permanently? > Sherri Porter > >>All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 1999 Report Share Posted September 27, 1999 Sherri, My thoughts and prayers are with you and Robbie. I am sure you are comfortable with the professionals you are dealing with. The facilities in Dallas- where I live are superb as well. My daughter's sees doctors at Southwestern Medical School and the surgeon who does implants is one of the best in the area. If you want at any time the reference feel free to e-mail me privately. The entire team is PHENOMENAL. He has dealt with children with Mondini, such as my daughter. May you find strength in this difficult time. Tina Sherri Porter wrote: > From: Sherri02@... (Sherri Porter) > > Hi Cheryl, thankyou for the kind words.And no Cochlear doesn't know > what's going on.They are puzzled, they're looking into it now > though.There was three people from cochlear there working with him.I > haven't been to another center because I'm pretty convinced that he's > with the best.Everybody is putting their all into this.Hopefully we'll > have answers soon. > Sherri Porter > > > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 1999 Report Share Posted September 27, 1999 Sherri, We're sent a bunch of our guardian angels your way to stay for a while! Here's to things looking up! Hugs, et al Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 1999 Report Share Posted September 27, 1999 Sherri, I sure hope they get things figured out real soon. I know how frustrating this must be for you. I hope Robby is doing well through all this. My son Zak had the N24 last Dec, in Jan he developed an infection. The implant was turned on and he was geting really good results with it, he was able to detect speech at 20db. However, we couldn't get rid of the infection. We tried several antibiotics, they surgically cleaned the area, they moved the implant and cleaned the area again, more antibitotics, then IV antibiotics, then the implant extruded, and finnally had to be removed about a month ago. And now we are facing the decision of what to do about re-implantation. So I have some idea of the furstration that comes with complications and I know it is not easy for you. Please know that you are ont alone and feel free to vent anytime you need it!! You and Robby are in my prayers, RoseAnn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 In a message dated 10/17/99 8:27:21 PM Eastern Daylight Time, Sherri02@... writes: > Finally, finally, finally. I have great news.After three long terrible, > heartbreaking months, I am finaly rejoicing!!!!! Robby can finally hear > with the CI.They switched him over to the ace strategy and Robby is now > responding to speech and everything Sherri! What wonderful news! I am so glad to hear that he is now finally responding! YAAAYYYY for Robby!! Orla Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Sherri, That is great news on Robby. I am happy for you and your family. Elaine D. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 1999 Report Share Posted October 17, 1999 Sherri, What wonderful news!!!!!! We have kept you in our prayers and will continue to do so. Keep us posted on all the progress!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 1999 Report Share Posted October 18, 1999 Sherri, that is the best news I've heard! You must be flying high -- congratulations and good luck! Stefanie >From: Sherri02@... (Sherri Porter) > >Finally, finally, finally. I have great news.After three long terrible, >heartbreaking months, I am finaly rejoicing!!!!! Robby can finally hear >with the CI.They switched him over to the ace strategy and Robby is now >responding to speech and everything.He acts like a totally different >child now.When he sees the speech processer coming towards him he gets >so excited and when it's on, he can't stop smiling and laughing.He is >more vocal, more attentive, and alot more gigglier!!!!!!!!!!! I am on >cloud nine.Everybody thought tat he was going to have to be reimplanted >because he wasn't responding at all so we thought something was >wrong.But not anymore!!! Now I know about the joy that everyone has >spoke about and I sooooo longed for.I guess God listened to our >prayers!!! Thankyou!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! > Sherri Porter Quote Link to comment Share on other sites More sharing options...
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