babygirl Posted June 25, 2014 Report Share Posted June 25, 2014 Hi Everyone! I have custody of my four year old granddaughter who has bilateral profound SNHL. Her first set of omplanys were activated 12/17/2012. After about thtre months, she would scream and fight us when we put them on. She acted as if they were hurting her. She would then go to her room and hide them! Then, after s few months she stopped having this reaction. But, she seemed to be regressing with speech therapy snd would ignore me when I called her. We found out in May that both implants failed! Considering the 2% failure rate, I have been baffled by this! The Med-El audi was in the OR for the explant and implantation of new devices. There was nothing visual to indicate cause of failure and they were sent to Innsbrook for engineers to determine. The nrw imolants were activated on 6/6 and med-el rep brought her Rondos, which are great, but they keep falling off. The other day she eas outside playing and got very frustrated. I had to take them off because she eas so frustrated. I called audi and we will go in Friday for stronger magnets. It was suggested to me to try the nrw sport headband for them. I called med-el anf was told insurance will not civer tbis and the cost is $40! This is absolutely outrageous for a headband. We have a very limited income and my budget just won't stretch that far. I personally feel that this should be covered by insurance because of the risk of the alligator clip not holding and them being damaged. Nevertheless, I find it appalling that med-el charges such a ridiculous price for a strip of material with pockets! Because of the extreme heat here in Georgia, the only way to havr her outdoirs very much is to go to the pool. Some days we are there three hours and she cannot wear her processors. I was looking forward to the waterproof covering for the Rondos, but the price will probably be much too high for me to purchase! Are there any other folks in this group who are "poor?" If so, how do you manage to resolve issues like this? She is my top priority and if her processors will not stay on she is getting no benefit from them! I understand that corporations are about profit, but I do not understand these prices! This entire experience with bilateral failures has really stressed me because she has lost precious time. I will not put her through the frustration of her playtime being disrupted. It took up three days to get her to wear them because she thought they were going to "hurt" her. She had to realize they were "okay." She is not going to want to wear them if she cannoy play without them falling off. If anyone has any suggestions that may help, please let me know. Quote Link to comment Share on other sites More sharing options...
babygirl Posted June 25, 2014 Author Report Share Posted June 25, 2014 Hi Everyone! I have custody of my four year old granddaughter who has bilateral profound SNHL. Her first set of omplanys were activated 12/17/2012. After about thtre months, she would scream and fight us when we put them on. She acted as if they were hurting her. She would then go to her room and hide them! Then, after s few months she stopped having this reaction. But, she seemed to be regressing with speech therapy snd would ignore me when I called her. We found out in May that both implants failed! Considering the 2% failure rate, I have been baffled by this! The Med-El audi was in the OR for the explant and implantation of new devices. There was nothing visual to indicate cause of failure and they were sent to Innsbrook for engineers to determine. The nrw imolants were activated on 6/6 and med-el rep brought her Rondos, which are great, but they keep falling off. The other day she eas outside playing and got very frustrated. I had to take them off because she eas so frustrated. I called audi and we will go in Friday for stronger magnets. It was suggested to me to try the nrw sport headband for them. I called med-el anf was told insurance will not civer tbis and the cost is $40! This is absolutely outrageous for a headband. We have a very limited income and my budget just won't stretch that far. I personally feel that this should be covered by insurance because of the risk of the alligator clip not holding and them being damaged. Nevertheless, I find it appalling that med-el charges such a ridiculous price for a strip of material with pockets! Because of the extreme heat here in Georgia, the only way to havr her outdoirs very much is to go to the pool. Some days we are there three hours and she cannot wear her processors. I was looking forward to the waterproof covering for the Rondos, but the price will probably be much too high for me to purchase! Are there any other folks in this group who are "poor?" If so, how do you manage to resolve issues like this? She is my top priority and if her processors will not stay on she is getting no benefit from them! I understand that corporations are about profit, but I do not understand these prices! This entire experience with bilateral failures has really stressed me because she has lost precious time. I will not put her through the frustration of her playtime being disrupted. It took up three days to get her to wear them because she thought they were going to "hurt" her. She had to realize they were "okay." She is not going to want to wear them if she cannoy play without them falling off. If anyone has any suggestions that may help, please let me know. Quote Link to comment Share on other sites More sharing options...
Leblisa Posted June 25, 2014 Report Share Posted June 25, 2014 Hello Judy, I can hear your frustration loud and clear and your little granddaughter is so lucky to have a loving caregiver in you. I imagine if she hadn't had the rare failure of her first implants you wouldn't be feeling quite so much frustration with the cost of things now, but you both have already been through so much! I think MedEl is a wonderful company and I am sure they do try to keep costs down as best they can. If it were a simple headband it would be as inexpensive as a simple headband from Walmart. Because it is specially made, and probably not mass produced like headbands made in China, I assume the production costs are higher. In any case, if you can save even $1 each week, eventually you will have enough to afford to buy one for her. You ask how other people handle these unexpected costs: in the past if I needed something out of my budget range I have sometimes sold something that I owned to raise some cash, I've asked if it's possible to make a payment plan of maybe $10/month for 4 months; I've worked some extra hours and I've sometimes just cut back on other expenses that weren't really necessary, for a while. In the meantime, does she have a back-up set of processors? If so, you might be willing to experiment with do-it-youself waterproofing. There is a video on YouTube that shows a father using a device that is normally used to wrap food for long term storage in the freezer but instead he uses it to make a tightly-sealed, air-filled, plastic cover for the processor for his son. They then also put a swim cap on and you see the boy jumping in the pool and playing with his friends in the water. I've also heard of people having good luck with just double bagging in a top-quality zip-lock bag and then putting a swim cap on top. I think you should go on YouTube and search for videos about 'waterproofing cochlear implant processors' and see what other people are doing. The stronger magnets will help her Rondos to stay on better. When I first got mine I needed the #4 magnet (also for my Opus 2s). I've graduated to #3 magnets but it will still occasionally fall off - thank god for the tether! I would be good if you had a stronger magnet for playtimes and then you could switch to less strong magnet for quiet times so she does not have that much tightness in her scalp all the time. It's wonderful that her current implants work and, once the magnet strength is right for her, she'll be less frustrated with them. Your calmness and encouragement that things will get better will help her learn to deal with those difficult feelings - a tough (but valuable) lesson for any of us to learn, let alone a 4-year old! All will get better with time. Good luck to you both! And just one other thing: this site is very slow, so you will have to be patient with it. If you still see the word 'Loading' (mine shows in a yellow box up at the top) don't keep clicking on the 'Submit' button because it doesn't speed it up and simply makes repeat posts. Quote Link to comment Share on other sites More sharing options...
babygirl Posted June 25, 2014 Author Report Share Posted June 25, 2014 Thanks for your input! This site of extremely slow and I did keep hitting submit! I know now not to do that again. And, yes I could save $1 per week and then she will be able to wear them in ten months. I have no idea where these are produced, but $40 is an outrageous price! One can actually purchase a handwoven basket for that cost! When I am given such a price, the first thing that pops in my head consists of two words, "corporate greed!" A piece of fabric is a piece of fabric...bottom line. You mentioned the food saver idea for swimming and I have considered trying this...only problem is that if they are ruined, I cannot replace them. Quote Link to comment Share on other sites More sharing options...
jpl2ci Posted June 25, 2014 Report Share Posted June 25, 2014 Judy, I sympathize with your frustration regarding the sport headband and keeping the RONDO attached to her head. I have the headband and the pockets are made from a different moisture wicking fabric. So the band itself is fabric 1 and the pockets are fabric 2 but they both work together to keep the processors dry. you could also look at EarGears, www.gearforears.com. they have a RONDO design for unilateral and bilateral, with or without a tether that clips to clothing. I use them on my OPUS 2 when I ride my bike here in TX. Quote Link to comment Share on other sites More sharing options...
christianlove777 Posted June 25, 2014 Report Share Posted June 25, 2014 Judy, WOW! I can't believe what I was reading. Both implants failed!?!?!? I would be screaming on top of my head too!!! Now that her implants has been replaced are they working? I am wearing #4 magnet on my Rondos and it's not strong enough for me yet. I just recently had surgery on both side on June 4th, 2014. I can tell over time that it's getting stronger to hold on to the implants. I only been wearing Rondos for 2 weeks now and each day I'm hearing more and more beautiful sounds (I was activated on both side on June 18th, 2014). I am responsible for Safety at my job and I have to do the Fire Drill. I got to tell ya, with the hearing aids I could NOT hear the fire alarm but with my CI I can hear it LOUD! I do not reqrest getting MED-EL implants and processors. I'm loving it each day and I know in time your granddaughter will start to love it too. I learn something last night. When I put my Rondos in the waterproof aLOKSAK bag so I can go play in the rain (it never rain) the batteries drain out fast. I did some research and learn that if you use 675p it will drain out fast because it needs to breath (really!?!?!). It work best with recharable batteries. Opus2 would be best to use in the bag and you can get Nammu swim cap that will hold the processor in the cap while swimming. I was told that MED-EL does not recommend it and may void the warrenty so becareful. Give it time and your granddaughter will start loving it and want to wear it in her sleep :-) Quote Link to comment Share on other sites More sharing options...
babygirl Posted June 26, 2014 Author Report Share Posted June 26, 2014 Thank you for your reply. I know this takes time and training the brain to hear is a slow process. I am quite upset that she lost so much time because of the failures. I sometimes feel very alone and question my decision on having her implanted with CI's. I know that my heart is affecting what I logically know. It just breaks my heart that she has been through so much in her young life! She does not know her dad and her mommy is struggling with addiction. But, she is s happy little girl, and very smart! She is my heart and I want the very best for her. I want her to always feel safe and loved. I want her to grow up with confidence in herself. I am trying to work through a lot of mixed feelings and this was not s very good time to learn a headband costs $40! I am experiencing some very uneasy feeling toward med-el, and need to resolve these feelings and keep moving forward. I have gotten some great suggestions and plan to look into the online ihear program to see if it would be covered by insurance. Ssloyah has speech twice a week for s total of 1 hour and I am not sure if this is enough at this point. Resources in my area are very limited. God has blessed me with this wonderful little girl and with this blessing comes a responsibility I do not tske lightly! I cannot let her down. Quote Link to comment Share on other sites More sharing options...
christianlove777 Posted June 26, 2014 Report Share Posted June 26, 2014 Judy, After reading you post you reminded me a lot about my step mom. Like Lisa said, your granddaughter is very blessed to have a great loving caregiver like you. I do not feel that she has lost so much because she has you. My step mom came into my life when I was 2 ½ years old. She would get up very early in the morning to clean house and get it done before I wake up. She would play with me and sometimes she would “home school” with me. We would play a game like putting shapes into buckets and before I can put the shape in I have to read her lips and respond back to what I think she said. She would do everything what she felt is best for me at that time. My parents were poor when I was growing up. If my step mom has not came into my life I think I would have done worse in school. I graduated high school 55 out of 331 students with top honor. It was my mother’s love caring and hard work that got me through. When I started to get lazy my dad made sure he got his belt and paddle ready LOL…it’s worth it. As long as you continue to home school with your granddaughter you will be helping speech therapist and teachers a lot. I had speech therapy 3 days (sometimes 5 it depends on their schedule) a week for about 30 minutes to 1 hour for 7 years. As long as you help her with speech and understanding words she will do great. Hopefully she will not struggle in English like I did. I am confident that she will do great all because of your loving, caring, responsibility, and hard work…it will pay off J Quote Link to comment Share on other sites More sharing options...
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