This post is going to be whiny. Consider yourself warned.
...
I signed up for a gym membership. Five years of parenthood, and the stresses of having a child with hearing loss, as well as the stresses of every day life, have not been kind to my body. Sure, I pretty much look the same as I did PB (pre-babies), but I don't feel the same. So, I decided to be selfish and do something for me.
In order to get myself to the gym, I knew that I would need to join a gym with a children's center. With our crazy work schedules, this ensures that I can get my workout in, even if Drew's Dad is out of town or working late. Great idea, or so I thought. The very first night that I left the kids in the play place, all of the older children made fun of Drew and his ears. How sad is that? So, after my workout, as I'm tired and ready to head home, I have to deal with hearing about how all of the other children in the play place were whispering and talking about Drew and his ears. Sucks.
...
I've finally made the big decision to enroll Drew in swim lessons. We are heading to Disney World for our first family vacation in 46 days, not that I am counting, and I thought it would be a good idea to introduce Drew to real swimming before our vacation. Well, today I had a little pity party for myself about how hard it is for me to get him to swim lessons. I have to bring his spare left ear parts. I have to put them in the waterproof food saver bag. I have to turn it on, take his other ears off, hold the ear, in a bag, on his head while trying to put a swim cap over it to hold in place. It sucks that he can't just run and jump in the pool like the other children. And the alternative, him not being able to hear while in the pool, is unimaginable.
...
Drew loves sport. Seriously loves them. But his ears are always falling off. He has to stop and start playing so many times in a day just because his ears come off and he needs them put back on. And now, he has decided that he enjoys boxing. (I blame that one on his Daddy and the Wii.) Well, he wants to take his shirt off to box. Well, in order to do that, he knocks his ears off and then needs them put back on. It sucks that he can't just play what he wants to play, when he wants to play without having to make sure he can hear.
...
I am finished. Now back to our regularly scheduled (cheery) blogging.
Showing posts with label Dilemmas. Show all posts
Showing posts with label Dilemmas. Show all posts
Tuesday, February 23
Monday, December 8
Tough Decisions
I guess the title really says it all. We have made some really difficult decisions recently regarding our Cochlear Implant team and the service level being provided to Drew. I am always reluctant to share these types of situations, as I have no way of knowing who is reading this blog, and I don't want to upset or offend anyone. However, I don't think that we are the only family that will experience these types of issues, so I want to be candid and share our story, in hopes of helping others in our similar situation.
We shared with you a few months ago that we have been having difficulty with Drew's new therapist through our Cochlear Implant team. After continuing to try to work through the issues, it became abundantly clear that this new therapist was never going to provide the level of service to which we were accustom, and have grown to expect. While she improved in areas of "lesson plans" and "homework," we continued to struggle during the session themselves. There were points of uncomfortable silence, where it seemed like she didn't know what to do or say, and was searching for something else to do.
I never felt like this new therapist ever really made an effort to "learn" or understand Drew. One glaring example, during our final session, was when working with the Ling 6 sounds. Drew has clearly mastered detection and imitation of these sounds over the past 17+ months. When we do a Ling 6 test with Drew, we test each ear individually, at a distance of 9-12 feet, with background noise, like the television or radio. During our final session, this therapist thought testing the Ling 6 at a 1/2 foot distance in silence, with both ears on, would be a good idea.
Overall, I felt that she really lacked the personality it takes to be the type of therapist our hearing impaired child needed. She was very passive and quite shy. And personality, no matter how many meetings I request, and suggestions I give, is not something that can be changed. So we decided to readjust our therapy schedule. We are now seeing our therapist through the Early Intervention program weekly, and we have added a weekly (in home) music therapy through We Joy Sing. Drew continues to have preschool one day a week, and beginning in January will be taking a gymnastics class. All of this combines to make an excellent language calendar, and keeps our boy very busy!
While we have been going thorough this struggle with therapy, we have also been having problems with Drew's audiology team. I have to say that this whole process has been very difficult. It's so difficult sometimes to advocate for your child, especially when he or she is exceeding expectations. I have often felt like my concerns are automatically dismissed because my child can talk at age level.
The problems surrounding audiology began in September, at Drew's mapping appointment. It had been nearly five months since Drew's last mapping appointment, and turned out to be a total disaster. Drew was asked to complete a language evaluation, which took the first 50 minutes of the appointment. This could have been completed at home, or therapy, to not waste precious mapping time. Then Drew's audiologist proceeded to look at his maps for about 10 minutes. That's 10 minutes combined. For both ears. Our audiologist wasn't even going to put Drew in the sound booth! She did so only at my request. The booth test lasted about three minutes and then we were sent on our way. During the appointment, Drew's audiologist only made adjustments to the map of his right ear.
I calmed myself down over the next few hours, but could not shake the feeling that Drew was not properly mapped. I contacted other parents, who all found the fact that no adjustments were made to an ear after five months quite odd. Then, the paperwork from the appointment was sent out incorrectly, indicating that changes had been made to his left ear, when in fact they were made to his right. The whole ordeal left me questioning whether or not Drew was appropriately mapped.
Within days, Drew's Dad and I began to notice that Drew was confusing the /o/ and /m/ sounds. Even at a close distance. His therapist noted this as well. This was alarming, and I brought my concerns to Drew's audiologist. I insisted on have a full booth test done for Drew, including results for each ear individually. Drew's audiologist was very open to this and scheduled the appointment for the following week. But the booth test was again disappointing, as she only tested Drew with both ears on, and only did environmental sounds. When the audiogram was complete, she handed to it me and said that everything was fine. I immediately noticed that Drew was hearing at 25db for the low frequencies, and around 20db for higher frequencies.
I continued to question Drew's maps. The one thing I knew was that Drew continued to confuse the /o/ and /m/ sounds. I felt like something was wrong with Drew's maps.
I decided to take Drew for a second opinion, at another CI program in our state. I did not tell the audiologist of any of my concerns. I simply wanted her to evaluate, on her own, Drew's maps, looking for reassurance that everything was OK. This new audiologist started the cochlear implant mapping appointment with a booth test (something I had asked our old audiologist for, to no avail). The new audiologist was able to test each ear individually, with the booth test lasting over 50 minutes! Coming out of the booth I felt such a sense of relief, knowing that we would have a very clear understanding of exactly what Drew was hearing with each ear.
Within minutes of analyzing Drew's two audiograms, the new audiologist looked and me and said, "Are you noticing Drew confusing the /o/ and /m/ sounds at all?"
I nearly feel off of my chair. "Um, yeah, that's exactly why I'm here," I thought. I told the new audiologist that Drew had been confusing those two sounds. Within fifteen minutes the new audiologist had made the necessary adjustments, and I watched as she tested Drew in front of me, go from confusing the sounds to clearing recognizing them. My confidence was instantly restored in Drew's maps.
But I left the second opinion appointment that day with a tough decision to make. Should we continue to have Drew mapped with his original audiologist, or move all of our services for audiology to a different hospital? This question has weighed heavily on my mind for the last two months. I have thought about this question a lot, and have finally come to the decision that we are going to move Drew's audiology services to another program.
I have had several conversations with our old audiology department about my concerns, and I was really starting to feel like there was an attitude with our program like, "Lady. Your kid can hear. What else do you want? Maybe he will confuse the sounds sometimes. At least he can hear something." At one point, we were even told that we have really high expectations. It just became clear that no matter what I do, I will never have the confidence in our former audiologist as a result of this situation. And since our program only offers one mapping audiologist, we have no choice but to go elsewhere.
I guess the moral of this (really long) story to parents is to follow your gut instinct. If you don't feel like you child is hearing something, go with that feeling and have it checked out. If we would not have sought out a second opinion, who knows when Drew's map would have been adjusted appropriately, and think of all the language time we would have lost as a result. As parents, we know our children best and really need to follow our feelings. This has been a really hard decision to make, as we have such respect for our surgeon and the program he is trying to build, but we have made a decision in the best in interest of Drew.
We shared with you a few months ago that we have been having difficulty with Drew's new therapist through our Cochlear Implant team. After continuing to try to work through the issues, it became abundantly clear that this new therapist was never going to provide the level of service to which we were accustom, and have grown to expect. While she improved in areas of "lesson plans" and "homework," we continued to struggle during the session themselves. There were points of uncomfortable silence, where it seemed like she didn't know what to do or say, and was searching for something else to do.
I never felt like this new therapist ever really made an effort to "learn" or understand Drew. One glaring example, during our final session, was when working with the Ling 6 sounds. Drew has clearly mastered detection and imitation of these sounds over the past 17+ months. When we do a Ling 6 test with Drew, we test each ear individually, at a distance of 9-12 feet, with background noise, like the television or radio. During our final session, this therapist thought testing the Ling 6 at a 1/2 foot distance in silence, with both ears on, would be a good idea.
Overall, I felt that she really lacked the personality it takes to be the type of therapist our hearing impaired child needed. She was very passive and quite shy. And personality, no matter how many meetings I request, and suggestions I give, is not something that can be changed. So we decided to readjust our therapy schedule. We are now seeing our therapist through the Early Intervention program weekly, and we have added a weekly (in home) music therapy through We Joy Sing. Drew continues to have preschool one day a week, and beginning in January will be taking a gymnastics class. All of this combines to make an excellent language calendar, and keeps our boy very busy!
While we have been going thorough this struggle with therapy, we have also been having problems with Drew's audiology team. I have to say that this whole process has been very difficult. It's so difficult sometimes to advocate for your child, especially when he or she is exceeding expectations. I have often felt like my concerns are automatically dismissed because my child can talk at age level.
The problems surrounding audiology began in September, at Drew's mapping appointment. It had been nearly five months since Drew's last mapping appointment, and turned out to be a total disaster. Drew was asked to complete a language evaluation, which took the first 50 minutes of the appointment. This could have been completed at home, or therapy, to not waste precious mapping time. Then Drew's audiologist proceeded to look at his maps for about 10 minutes. That's 10 minutes combined. For both ears. Our audiologist wasn't even going to put Drew in the sound booth! She did so only at my request. The booth test lasted about three minutes and then we were sent on our way. During the appointment, Drew's audiologist only made adjustments to the map of his right ear.
I calmed myself down over the next few hours, but could not shake the feeling that Drew was not properly mapped. I contacted other parents, who all found the fact that no adjustments were made to an ear after five months quite odd. Then, the paperwork from the appointment was sent out incorrectly, indicating that changes had been made to his left ear, when in fact they were made to his right. The whole ordeal left me questioning whether or not Drew was appropriately mapped.
Within days, Drew's Dad and I began to notice that Drew was confusing the /o/ and /m/ sounds. Even at a close distance. His therapist noted this as well. This was alarming, and I brought my concerns to Drew's audiologist. I insisted on have a full booth test done for Drew, including results for each ear individually. Drew's audiologist was very open to this and scheduled the appointment for the following week. But the booth test was again disappointing, as she only tested Drew with both ears on, and only did environmental sounds. When the audiogram was complete, she handed to it me and said that everything was fine. I immediately noticed that Drew was hearing at 25db for the low frequencies, and around 20db for higher frequencies.
I continued to question Drew's maps. The one thing I knew was that Drew continued to confuse the /o/ and /m/ sounds. I felt like something was wrong with Drew's maps.
I decided to take Drew for a second opinion, at another CI program in our state. I did not tell the audiologist of any of my concerns. I simply wanted her to evaluate, on her own, Drew's maps, looking for reassurance that everything was OK. This new audiologist started the cochlear implant mapping appointment with a booth test (something I had asked our old audiologist for, to no avail). The new audiologist was able to test each ear individually, with the booth test lasting over 50 minutes! Coming out of the booth I felt such a sense of relief, knowing that we would have a very clear understanding of exactly what Drew was hearing with each ear.
Within minutes of analyzing Drew's two audiograms, the new audiologist looked and me and said, "Are you noticing Drew confusing the /o/ and /m/ sounds at all?"
I nearly feel off of my chair. "Um, yeah, that's exactly why I'm here," I thought. I told the new audiologist that Drew had been confusing those two sounds. Within fifteen minutes the new audiologist had made the necessary adjustments, and I watched as she tested Drew in front of me, go from confusing the sounds to clearing recognizing them. My confidence was instantly restored in Drew's maps.
But I left the second opinion appointment that day with a tough decision to make. Should we continue to have Drew mapped with his original audiologist, or move all of our services for audiology to a different hospital? This question has weighed heavily on my mind for the last two months. I have thought about this question a lot, and have finally come to the decision that we are going to move Drew's audiology services to another program.
I have had several conversations with our old audiology department about my concerns, and I was really starting to feel like there was an attitude with our program like, "Lady. Your kid can hear. What else do you want? Maybe he will confuse the sounds sometimes. At least he can hear something." At one point, we were even told that we have really high expectations. It just became clear that no matter what I do, I will never have the confidence in our former audiologist as a result of this situation. And since our program only offers one mapping audiologist, we have no choice but to go elsewhere.
I guess the moral of this (really long) story to parents is to follow your gut instinct. If you don't feel like you child is hearing something, go with that feeling and have it checked out. If we would not have sought out a second opinion, who knows when Drew's map would have been adjusted appropriately, and think of all the language time we would have lost as a result. As parents, we know our children best and really need to follow our feelings. This has been a really hard decision to make, as we have such respect for our surgeon and the program he is trying to build, but we have made a decision in the best in interest of Drew.
Monday, April 14
CI Dilemma #2
What do you do on Sunday morning when your CI child is constantly crying because he keeps letting go of his balloon and can not reach it himself?
A. Put your Sunday paper away and follow him around for hours, constantly handing the balloon back time after time. You haven't read the Sunday paper since you had kids anyway, right?
B. Throw said balloon away.
C. Tie a loop in the string and hook it to your child's coil. That way when he lets go the balloon it is still attached to him.
A. Put your Sunday paper away and follow him around for hours, constantly handing the balloon back time after time. You haven't read the Sunday paper since you had kids anyway, right?
B. Throw said balloon away.
C. Tie a loop in the string and hook it to your child's coil. That way when he lets go the balloon it is still attached to him.
Tuesday, February 26
How To Swim With A Cochlear Implant On
This video gives us hope for those hot, humid days in mid summer. Many times we have sat and wondered "How can Drew swim with a his cochlear implant on?"
At first we figured it couldn't be done. We thought that we'd have to just keep a close eye on him, maybe communicate solely through sign because he wouldn't be able to hear a thing in the pool.
I know Cochlear's Nucleus Freedom Implant is "water resistant", but certainly that doesn't mean it can withstand a furious game of "Marco Polo". We figured swimming would be a difficult task to endure.
Then we came across this video, which has me ready to do a giant cannonball - Greg Lougainis style - right now!
The video states several times to proceed at your own risk (to the equipment), but I think this could definitely work. We will most definitely be shopping for the FoodSaver
to protect the implant and some flashy swimming caps, to get Drew ready for some big-league splashing this summer.
Note: Another accidental benefit of having bilateral cochlear implants pops up here. We'll have him wear just one in the pool, and if for some reason it is damaged, we have the other to fall back on until we can mortgage our house to pay for a replacement.
Happy Swimming!
At first we figured it couldn't be done. We thought that we'd have to just keep a close eye on him, maybe communicate solely through sign because he wouldn't be able to hear a thing in the pool.
I know Cochlear's Nucleus Freedom Implant is "water resistant", but certainly that doesn't mean it can withstand a furious game of "Marco Polo". We figured swimming would be a difficult task to endure.
Then we came across this video, which has me ready to do a giant cannonball - Greg Lougainis style - right now!
The video states several times to proceed at your own risk (to the equipment), but I think this could definitely work. We will most definitely be shopping for the FoodSaver
to protect the implant and some flashy swimming caps, to get Drew ready for some big-league splashing this summer.Note: Another accidental benefit of having bilateral cochlear implants pops up here. We'll have him wear just one in the pool, and if for some reason it is damaged, we have the other to fall back on until we can mortgage our house to pay for a replacement.
Happy Swimming!
Wednesday, October 10
CI Dilemma #1
We've had our first dilemma...
Often CI children wear their body worn processors in a pocket(s) attached to the child's clothing. So, what do you do when your CI child spills a cup of milk all down his shirt less than 20 minutes before bed-time?
a. Leave him in the wet shirt so he can keep his ears on.
b. Remove his ears and wet shirt and call it a day.
c.
Often CI children wear their body worn processors in a pocket(s) attached to the child's clothing. So, what do you do when your CI child spills a cup of milk all down his shirt less than 20 minutes before bed-time?
a. Leave him in the wet shirt so he can keep his ears on.
b. Remove his ears and wet shirt and call it a day.
c.
The diaper works too!
I have to say that we entertained the diaper idea for a few moments but I actually managed to keep both ears on while removing the wet shirt and putting on a new shirt. Man I'm getting good with his equipment!
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