Ashley's Activation

Ashley had an eval today to see how well she is developing. She has really progressed in the past 6 months. She jumped from a 6 month level to 11 to 12 month level. The doc was very pleased with her progress. She was a good girl too which is very hard for her. She was all over the place. She wore her glasses and her coil and didn't try to take them off. I guess they are growing on her. She reaches up and touches it now but does not pull it off. It is almost like she is learning that that is where her sound is coming from. She has started to make some new sounds. She is so vocal now. Almost getting Dada. Oh and she is cruising all around the furniture. It is just a matter of time and she is just going to take off. Sorry to ramble proud mama here.
 
ashleysmommy said:
Ashley had an eval today to see how well she is developing. She has really progressed in the past 6 months. She jumped from a 6 month level to 11 to 12 month level. The doc was very pleased with her progress. She was a good girl too which is very hard for her. She was all over the place. She wore her glasses and her coil and didn't try to take them off. I guess they are growing on her. She reaches up and touches it now but does not pull it off. It is almost like she is learning that that is where her sound is coming from. She has started to make some new sounds. She is so vocal now. Almost getting Dada. Oh and she is cruising all around the furniture. It is just a matter of time and she is just going to take off. Sorry to ramble proud mama here.
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Sounds like she is truly thriving in every way :) I love the picture of her in the blow up pool. Thanks for updating us.
 
ashleysmommy,

I just sent you a PM to ask about Ashley's progress, but you answered my question. I'm so glad Ashley is doing so well! Don't worry about rambling -- it sounds like you have every right to be proud! :)
 
So glad to have you back!!!! Not that everyone has not been a great help, I have missed your input. Not many here have the vision and hearing to deal with. Thanks.
 
ashleysmommy said:
So glad to have you back!!!! Not that everyone has not been a great help, I have missed your input. Not many here have the vision and hearing to deal with. Thanks.
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Thanks! It's great to be back! :) I'm happy to help anyway I can. If you ever have any questions about vision and hearing (CI) issues with Ashley, please feel free to send me a PM anytime. :)
 
Good to hear Ashley is doing so well.

It's allway great to go to these evaluations, because it really shows the progress.
At home we are too close to our children, so we sometimes don't notice. Only when other people visit us, or the other way around, we get feedback about progres.

Make sure you videotape daily life!! It's great to look back at it after a couple of months.!!
 
They help a lot. We know what areas we need to work more on and they give us advice and resources to get her new goals accomplished. She is starting to explore more and pay more attention to things. She is still very small for her age but a very feisty little girl.
 
I have a question about map sessions. How often from beginning to now do most have to go in for more programming? Do they start by working on volume levels or do they work on volume and frequency at the same time. I am having some doubts with Ashley's Audi office. Just wanted to know what the average is around. Thanks.
 
ashleysmommy said:
I have a question about map sessions. How often from beginning to now do most have to go in for more programming? Do they start by working on volume levels or do they work on volume and frequency at the same time. I am having some doubts with Ashley's Audi office. Just wanted to know what the average is around. Thanks.
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I'm not sure, but simply said, only the "volume" is adjusted up to comfortable levels. Frequencies and sort of fixed...

With Lotte, the dynamic range was adjusted (volume) until she started blinking - the reflex when too much sounds comes in. Then, they were turned down a bit....
 
ashleysmommy said:
I have a question about map sessions. How often from beginning to now do most have to go in for more programming? Do they start by working on volume levels or do they work on volume and frequency at the same time. I am having some doubts with Ashley's Audi office. Just wanted to know what the average is around. Thanks.
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To begin with I went in every two weeks, which then grew to 4 weeks and currently I am on every 6 months (this is 1 year post switch on.)

The volume (comfort level) is set for every electrode (being the range of frequency sounds) one by one. so it's done together. I can't see how you would only set the volume, unless all the frequencies were bumped up at the same time and by the same level of increase? Maybe the Med-El is done differently?
 
During the first year my 1st CI was activated, my mapping schedule was as follows: 2 weeks following activation, 1 month, 3 months, 6 months, 9 months and once every 12 months (my current schedule at 2 1/2 years post activation of first CI and 1 1/2 years post activation of second CI).

With the Nucleus CI, T (threshold -- the softest sound you can hear) and C (comfort -- the loudest sound you can hear without discomfort) levels are set for each electrode.

For adults and children who are old enough to do so, this means listening to a series of beeps and letting the audi know when they are barely audible and comfortably loud.

Infants and toddlers are mapped differently using either NRT (neural response telemetry) or play therapy (for example, placing a toy in a box every time a beep is heard).
 
Thanks. Ashley has only had 3 mapping sessions including activation. Activation was in April. Her next is at the end of July. When we were getting ready for the surgery the doc talked about it and said it would be around every 2 weeks for the first couple of months and then it would go to monthly and so on. They have been bumping up her volume each visit. We hit a loud program in June so the audi deleted that one and left 2 old and only one new. Now we have to wait 7 weeks for more because they had a computer mix up at the office. Ashley has been on the loudest program from the first week after it was set. She seems to do well at first and then gets uninterested in in some sounds like she is being a typical toddler and ignoring things like she is just used to it and it doesn't interest her any more. She is babbling a lot more and making many new sounds. She will also repeat some sounds when i make them to her. A few are more consistent than others. When she hears the duck she will say ah ah ah for quack quack quack. The doctor seems to think she is doing well but would like her to turn to more sounds. She does this when on a new program for the first week. I explained this and she didn't seem to think there was a problem there. Ashley is super sensitive and it takes a lot to keep her attention. She is also super busy. I feel ,and this is just me being a mom, that she should be getting more mapping than she has gotten so far. I am going to voice my concerns to the audi when we go at the end of the month. We also have to start with a new audi that has never seen Ashley. We were supposed to meet her this time and go over her case with the old audi. That didn't happen. I am very frustrated right now. I am loosing confidence in her implant center. They have been so wishy washy the past two visits. Sorry to go on and on but I am just so frustrated. Any advice?
 
I don't think that her CI should be set too loud if it bothers her. I think it's probably better to keep things as they are or maybe even turn it down if she gets agitated. It must be very difficult to do a maping for someone as young as your daughter because they can't really communicate what is comfortable for them.
 
Thats just it. I am not sure if it is loud enough. They only bump up the volume very tiny bits. I know this is needed so she is not sent into sensory overload and scared by the sounds she is hearing. She was already used to the old programs the one new one was barely louder. The next one she went higher than she wanted but said she couldn't back out with out loosing the other new one so she just stopped. I would have rather her started over so she could get 2 new like before. I let it go because we were supposed to get more in 4 weeks. Well now that didn't happen and she will be 6 weeks on her only new program and it is usually only about 1.5 to 2 weeks at the most. I get better reactions with her after new programs are turned on. After the newness goes away she becomes uninterested in the same sounds and toys she was into before. I am at a loss right now. She is still showing good signs of hearing but she is also at times very hard to read. Maybe I am expecting too much and need to take a step back. I just see so much progress for about a week or two and then she seems to go back into her own little world. That is not a bad thing I just want her to get the max benefit she can and sometimes I don't feel she is for lack of follow up by her audi. I know once we hit her max comfort level things will spread out a bit. I know it is a slow process because she can not tell us what she can and can not hear. I am just getting frustrated I guess. Sorry to ramble again.
 
I know it may be frustrating but I shouldn't set your hopes up too high. I think that it is sensible to be very careful for a child of Ashley's age. I'm sure you wouldn't want her to suffer from having to endure noises that were too loud and unpleasant for her.
 
ashleysmommy said:
Thats just it. I am not sure if it is loud enough. They only bump up the volume very tiny bits. I know this is needed so she is not sent into sensory overload and scared by the sounds she is hearing. She was already used to the old programs the one new one was barely louder. The next one she went higher than she wanted but said she couldn't back out with out loosing the other new one so she just stopped. I would have rather her started over so she could get 2 new like before. I let it go because we were supposed to get more in 4 weeks. Well now that didn't happen and she will be 6 weeks on her only new program and it is usually only about 1.5 to 2 weeks at the most. I get better reactions with her after new programs are turned on. After the newness goes away she becomes uninterested in the same sounds and toys she was into before. I am at a loss right now. She is still showing good signs of hearing but she is also at times very hard to read. Maybe I am expecting too much and need to take a step back. I just see so much progress for about a week or two and then she seems to go back into her own little world. That is not a bad thing I just want her to get the max benefit she can and sometimes I don't feel she is for lack of follow up by her audi. I know once we hit her max comfort level things will spread out a bit. I know it is a slow process because she can not tell us what she can and can not hear. I am just getting frustrated I guess. Sorry to ramble again.
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I am sorry to read about your frustrations. I cant say that I know what it is like but I can tell u to take it one day at a time.
Babies that age have short attention spans anyway so do you think that could be it?
 
shel90 said:
I am sorry to read about your frustrations. I cant say that I know what it is like but I can tell u to take it one day at a time.
Babies that age have short attention spans anyway so do you think that could be it?
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She has always had a very short attention span. Some sounds though would catch her and she would get really still and concentrate to hear them. Once they stop she goes right back to what she was doing. I think I am starting to second guess her implant team because they have given us so much info in the past 3 or 4 months and then turn around and go the opposite direction with everything. It's almost like they don't even read the notes from the last visit. My frustration is really coming out sorry. I know I have to be patient with Ashley and I have always let her do things in her own time. I DO NOT push her. She is doing great to me any way. I just feel a little more attention to her mapping and adjustments would make a difference. Again my frustrations are coming out. She has even started wearing her implant all but about 2 to 3 hours a day (nap time). She is doing better than me I think. :giggle: Thanks for the input.
 
I do know that with children, they do tend to be more conservative and slower with the volumes. I would not compare our experiences to her. It does sound like from what you are saying that this is the best approach to take with her sensory issues. It is a real achievement considering she is strong willed and takes strong issue with certain things that she wears her implant all day and is happy to do so.

Definitely talk to the clinic about your concerns though. You might find that talking to them and understanding why they do things they way they do will help alleiviate your frustration.
 
I am planning on talking with them. I hope the new audi can clear some things up. I heard from a mom that has already taken her child to her. She said she seems to be real thorough. She took a lot of time going over things. The change may do us good. I am sure Ashley will be fine. I need to remember how far she has come to get to this point. I was just overly frustrated by all of the mixed answers and info we have been getting . I have been getting any where from every 2 weeks to once a month as far as the kids around my area are concerned for frequency of sessions. Maybe they are moving slower with Ashley for a reason. I just wish they would have better communication. Thanks for the input and letting me vent.
 
Maybe you will also find that once she goes bilateral that she will be receiving adequate input with the current mapping strategy?
 
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