Julie72 Posted January 13, 2019 Report Share Posted January 13, 2019 Hello everyone - We have just joined this group and thanks for having us. My 5-year old is a new implanted little girl with SSD. We are unsure when she went deaf in one ear. She was activated on 12/4. We are just beginning our AVT journey and long story short, we found out on this past Tuesday that she is hearing through her Roger Select and only loud noises through processor. She started out hearing beeps from activation (only through Roger) and continued over the month. I am a little frustrated with our Roger Select. She heard everything from her therapist from songs, words, sounds in a different room and one ear plugged. For our therapy at home, she only hears half of what I say through the Roger (which is great), but wondering why. Seems like a great device, but it is frustrating that I cannot see if it is working or hooked up to her okay unless she hears something. I only go in the next room about 10 feet away. It would be nice if the indicator stayed green while talking but everything goes off and Phonak said it is normal. She gets a little frustrated at home with AVT. I think part of it is I'm continuously asking her, "Do you hear anything?" because I fear it isn't working properly. While on this topic, does anyone have any great apps for a 5-year old that cannot read yet except for sight words? We have been streaming ABC Mouse music videos, etc. but this is getting old to her. Now that she is hearing, I'd like her to have something to interact better with, although she can interact with ABC, but we need something else. Thank you for your tips and advice! She is doing very well with wearing her processor, etc. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 13, 2019 HearPeers Heroes Report Share Posted January 13, 2019 @Julie72 Congrstulations on your daughter’s great start with her CI. That is terrific. Since she was only activated last month, her CI hearing has probably not stabilized yet. It took me 3 months before reaching stable MAPs. During those first 3 months my listening with my CI went something like this... get a new MAP....hear so much better..... time goes on.....harder to hear......time for another new MAP So it is quite possible that your daughter’s CI hearing is changing still. But it will become stable and then this pattern will stop. It just takes time. As a Teacher of the Deaf I work with children with CIs (in addition to having bilateral CIs myself). We use the Roger System at school for many students. It is a great system for understanding speech at a distance and to help in noise. We do not recommend that children depend on the Roger System in their daily lives. We want them to hear well with their processor alone. That’s why we conduct our auditory therapy sessions without the Roger input. For me, on my own listening journey, I found it best to train in as close to the natural setting as possible. For example, if I wanted to improve hearing someone seated across the living room....I trained listening to speech at that distance. Roger is line of sight. Inside the signals bounce off of the walls and sometimes line of sight is not as much of an issue. I hope your daughter continues to do so well. Which processor is she using? Julie72 1 Quote Link to comment Share on other sites More sharing options...
Julie72 Posted January 13, 2019 Author Report Share Posted January 13, 2019 Thank you for your response! She has the sonnet w/ flex31 electrode array. We were told to do our AVT with the Roger, as our therapist does, but it may be because she is not really hearing yet with just processor alone. It's also hard to isolate her bad ear because she hears so well with her left - even with a plug! She has received 9 maps total since 12/4 and we will remain on one until early March. She has come a long way and we are hopeful! The Roger has just been very frustrating, but think we just need to be patient. I think it will help a lot when she is hearing from her processor, etc. Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 13, 2019 HearPeers Heroes Report Share Posted January 13, 2019 @Julie72 I am trying to think of some ideas for isolating her CI ear for training. Your daughter is only 5...... -if you have headphones at home that are completely around the ear, you can set your iPhone or iPad under settings so that all sound is delivered to one side only. That would provide only CI sound without using Roger. -you can use a BT telecoil neckloop, like Artone 3 MAX, and set the Sonnet on T. Sync it to your phone or iPad and that would deliver only CI sound to your daughter as well. The difficulty in using Roger with our Med-El processors is that it ALWAYS mixes Roger signal with environmental sounds. Our Sonnet mic remains active. Telecoil will cut off all environmental sounds and provide purely the audio signal from the device. There is a cool online story website for kids. Great listening practice. Let me post a link for you. It is free. Julie72 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 13, 2019 HearPeers Heroes Report Share Posted January 13, 2019 https://www.storylineonline.net/ Julie72 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 13, 2019 HearPeers Heroes Report Share Posted January 13, 2019 @Gemma Do you have suggestions for this family? Julie72 1 Quote Link to comment Share on other sites More sharing options...
Julie72 Posted January 13, 2019 Author Report Share Posted January 13, 2019 @Mary Beth thank you for your tips! I am looking at this story site now! Mary Beth 1 Quote Link to comment Share on other sites More sharing options...
Gemma Posted January 14, 2019 Report Share Posted January 14, 2019 Sorry I’m not upon Children’s apps.... As she not a profiecent reader yet how about letting her watch/listen to TV shows that she knows with sound to CI alone, or using YouTube kids videos. Try 10 - 15 mins at a time. have you got any children’s audio books, or do any of her books have CD’s etc that go with them that you can play for her whilst she looks at the book? Again there are a naumber of Children’s audiobooks on YouTube too, but it’s best if you go through and select some first to make sur they are appropriate. Good luck! Mary Beth and Julie72 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 14, 2019 HearPeers Heroes Report Share Posted January 14, 2019 Thank you @Gemma! Quote Link to comment Share on other sites More sharing options...
Julie72 Posted January 14, 2019 Author Report Share Posted January 14, 2019 We have been streaming ABC Mouse music videos that she is familiar with, such as Itsy Bitsy Spider, etc. The problem is there are only so many and she is bored. ha! Thank you @Gemma Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted January 14, 2019 HearPeers Heroes Report Share Posted January 14, 2019 @VeroNika is single sided deaf with a CI too. Any suggestions for @Julie72? Quote Link to comment Share on other sites More sharing options...
VeroNika Posted January 22, 2019 Report Share Posted January 22, 2019 Hi @Julie72 - let me start by wishing you and especially your daughter all the best for her haring journey! 😊 Like @Mary Beth said I am ssd and use a concerto/opus 2 by Medel for my deaf ear!my opus 2 came with a connection cable that lets you directly connect the processor with things like an iPod/smartphone/laptop and found that helpful for training, as otherwise, when training, you always hear with your hearing ear as well (note: I was told not to use that cable when devices are being charged).so I would listen to music/audio books I like with that cable to train just the hearing through the processor!However I am sorry - I don't know of any specific child-friendly training apps and, as I don't use a Roger pen I can't say anything about the specifics of how that gets along with ssd!if there's anything you'd like to know about ssd and things like going to school, tips for noisy environments, etc. just let me know and I am happy to help! 😊 Julie72 and Mary Beth 2 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Jdashiell Posted March 8, 2019 HearPeers Heroes Report Share Posted March 8, 2019 I saw this in twitter and wanted to share https://twitter.com/i/redirect?url=https%3A%2F%2Ftwitter.com%2Fi%2Ftopics%2Ftweet%2F1103966108585996288%3Fcn%3DZmxleGlibGVfcmVjc18y%26refsrc%3Demail&t=1+1552051579104&cn=ZmxleGlibGVfcmVjc18y&sig=227e0eff262608b3ca6fb0ba556465edef2175be&iid=2b439b0e337f454cbaa8f901196aa8a2&uid=36647297&nid=244+272699392 I have never shared a twitter link before and wonder if those without a twitter account and read it. Julie72 1 Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted March 8, 2019 HearPeers Heroes Report Share Posted March 8, 2019 Med-El has Luna on their FB page too if people can not access it via Twitter Quote Link to comment Share on other sites More sharing options...
HearPeers Heroes Mary Beth Posted November 13, 2019 HearPeers Heroes Report Share Posted November 13, 2019 @MED-EL Moderator SSD folder please thanks Quote Link to comment Share on other sites More sharing options...
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