What a difference a day makes. Or in this case a week.
I called the Audiology Department head on a Thursday, explained my concerns, and was wholly validated. We discussed my concerns, and also the fact she was leaving town for a conference and I should expect to hear back by mid-week. The following Tuesday I heard back from her confirming we had a new audiologist and who it would be.
There is a downside to O's new audiologist, but it is relatively minor. She only ever works Thursdays & Fridays. I can handle that.
I decided that, since she was just taking on our case, I would wait and call Monday morning if I hadn't heard anything. I didn't have to wait. She called me before 10am on Thursday. One week after my initial conversation with the department head.
The conversation with O's audiologist was great. Amazing even.
She confirmed our hearing aid order & color, expressed disappointment over the fact she wouldn't be able to see us the next day and set an appointment for the following Thursday to get O's hearing aids in.
The delay was completely out of her hands - the ear molds hadn't been cured yet, and wouldn't be arriving until Monday. She had just called the company to confirm.
But wait, there's more!
She went over payment (because $$$$), reminded me to bring in certain paperwork, asked if she would be able to forward our information to an organization that routinely helps kids with hearing aids, and let me know what to expect.
She also told me that she wants us to have a 'team meeting' shortly after O gets fitted, if not that morning, with APSEA & our SLP as well. Amazing.
Needless to say I am so, so relieved.
And although the switch to her meant a delay of two days from the original hearing aid appointment, I couldn't be happier with the decision.
Showing posts with label hearing screening. Show all posts
Showing posts with label hearing screening. Show all posts
Tuesday, 28 October 2014
Friday, 17 October 2014
Scary Buying Decisions
Since O's diagnosis, we've had a lot of questions. What caused it? Could it get worse? Can it be fixed? What therapies will be needed? How can we best help? Fortunately, our rep from APSEA has been incredible in helping to answer a lot of these, and more, to help us feel like it's not completely overwhelming.
Once coming to terms with all of the basics, however, the biggest question is - what device will he need? The answer from APSEA was "your audiologist knows all about the current devices and will help you pick the one he'll need." So, we asked our audiologist.
She asks us if we feel confident in our decision. Having never bought hearing aids, and the amount of uncertainty we got from our audiologist, of course we answered that we weren't entirely confident. Thankfully, she offered to get us a second opinion from an audiologist she often works with.
The next morning we get the second opinion - option C is absolutely not acceptable for our little guy. While it would be functional, the extra features in option A are, in fact, heavily used in infants and toddlers. So, yes, they will cost $300 extra in total, but will also save us large amounts of frustration that could likely lead us to buying them anyway 6 or 12 months down the road.
At this point, we both feel completely let down by the audiologist we've worked with so far. While his testing and diagnosis has been extremely thorough, it has become clear that he has very little experience with children and parents. We are in a vulnerable position, and need guidance from the professionals.
All I have to say at this point is - I am incredibly grateful for our rep at APSEA for asking the simple questions like "do you feel confident in your decision", and for being willing to fight for us until we do.
"Well, there's option A at $550 per ear, or option B at $1,200 per ear. It has a few more features."That's about it. So, I look up the devices on the manufacturer's website to compare the two. As far as I can tell, the features added in B wouldn't really apply, as they are controlled manually on the fly by the wearer to make things "a bit clearer" in very specific situations. Not really something an infant/toddler is going to do. So, we ask if we understand that correctly.
"You're right, he won't need those extras. Actually, he won't need the extras in option A either, we turn them off for children. Here's option C, it's $400 per ear, and will have everything you need. Except that A comes with a free gift if you want that."Well, if they're functionally identical for children, of course we want option C. And no need to pay an extra $300 total for a free gift. So, we order, and let our APSEA rep know of our decision. And this is where it gets interesting.
She asks us if we feel confident in our decision. Having never bought hearing aids, and the amount of uncertainty we got from our audiologist, of course we answered that we weren't entirely confident. Thankfully, she offered to get us a second opinion from an audiologist she often works with.
The next morning we get the second opinion - option C is absolutely not acceptable for our little guy. While it would be functional, the extra features in option A are, in fact, heavily used in infants and toddlers. So, yes, they will cost $300 extra in total, but will also save us large amounts of frustration that could likely lead us to buying them anyway 6 or 12 months down the road.
At this point, we both feel completely let down by the audiologist we've worked with so far. While his testing and diagnosis has been extremely thorough, it has become clear that he has very little experience with children and parents. We are in a vulnerable position, and need guidance from the professionals.
All I have to say at this point is - I am incredibly grateful for our rep at APSEA for asking the simple questions like "do you feel confident in your decision", and for being willing to fight for us until we do.
Monday, 6 October 2014
A Diagnosis - part 2
I was thrilled when the audiologist called me later that same day to say she could get us in within two weeks.
We would have to sleep deprive O in order to make sure he would sleep through the test, but she assured me that we would have whatever time needed to get him to sleep once we got there.
The morning of the appointment came, I had a cranky baby in my arms, and my phone rang. It was the receptionist for the audiology dept. calling to cancel as one of the audiologists were out sick. I would hear back, she said, with a new appointment.
About a week later that finally happened. A new audiologist I hadn't dealt with called to schedule a time. He seemed flustered and short, deciding that he would bring us back without a second audiologist in a week's time.
Again I sleep deprived O and got ready for the appointment. Since he is now also solely bottle fed I made sure he was hungry and tired by the time we left. When arrived we went to the waiting room. When this new audiologist came to get us he decided to again run a tympanometry. No real surprise but O's ear had flip flopped again - one was showing decent movement, the other was not.
We then went in to the room where he was to perform the test. O was restless and hungry, but this audiologist didn't seem to care. He went about everything else, so finally I just took out the bottle and started to feed O.
The testing took the better part of two hours, during which time O made a valiant effort to stay asleep in my arms. Have you ever held a baby for two hours trying to be as still as possible? That shit sucks.
But I digress. After two hours we were no better off than we had been. Since he wasn't very open or talkative with us before or during we had no idea what was really happening. It turns out the audiologist ran a more specific version of the ABR instead of the bone vibration test we had been told would be performed. He was more or less confident in the results (which didn't look very good) but he wanted us to come back, again, to do the bone vibration test.
The very next week I again sleep deprived my baby. Again he ran a tympanometry test and this time there was decent movement in both ears. The second audiologist was a bit better, but barely, when it came to expressing what was happening during the test. I volun-told my husband that it was his turn to hold O during the test.
Nearly three hours later we had the results: O has moderate-severe hearing loss in both ears.
We would have to sleep deprive O in order to make sure he would sleep through the test, but she assured me that we would have whatever time needed to get him to sleep once we got there.
The morning of the appointment came, I had a cranky baby in my arms, and my phone rang. It was the receptionist for the audiology dept. calling to cancel as one of the audiologists were out sick. I would hear back, she said, with a new appointment.
About a week later that finally happened. A new audiologist I hadn't dealt with called to schedule a time. He seemed flustered and short, deciding that he would bring us back without a second audiologist in a week's time.
Again I sleep deprived O and got ready for the appointment. Since he is now also solely bottle fed I made sure he was hungry and tired by the time we left. When arrived we went to the waiting room. When this new audiologist came to get us he decided to again run a tympanometry. No real surprise but O's ear had flip flopped again - one was showing decent movement, the other was not.
We then went in to the room where he was to perform the test. O was restless and hungry, but this audiologist didn't seem to care. He went about everything else, so finally I just took out the bottle and started to feed O.
The testing took the better part of two hours, during which time O made a valiant effort to stay asleep in my arms. Have you ever held a baby for two hours trying to be as still as possible? That shit sucks.
But I digress. After two hours we were no better off than we had been. Since he wasn't very open or talkative with us before or during we had no idea what was really happening. It turns out the audiologist ran a more specific version of the ABR instead of the bone vibration test we had been told would be performed. He was more or less confident in the results (which didn't look very good) but he wanted us to come back, again, to do the bone vibration test.
The very next week I again sleep deprived my baby. Again he ran a tympanometry test and this time there was decent movement in both ears. The second audiologist was a bit better, but barely, when it came to expressing what was happening during the test. I volun-told my husband that it was his turn to hold O during the test.
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| Sleep deprived and deceptively happy - that only lasted a minute |
Nearly three hours later we had the results: O has moderate-severe hearing loss in both ears.
Sunday, 5 October 2014
A Diagnosis - part 1
When you're about to leave the hospital, after just having your sweet baby they do a simple screening to check for possible hearing problems. They stick these little headphones in your child's ear and bounce a small sound-wave in. The test is checking for the echo. If an echo is picked up, your baby passes. If not, they are referred, which means further testing is needed.
O was born during a particularly busy period for the maternity ward. The day I went in I was alone in Labour & Delivery. But by the time I had given birth there had been four more babies born. Three more followed shortly after.
It should be no surprise then that our nurse was run completely off of her feet. And visibly pregnant. When she came to do the first attempt we mentioned our concern over O being slightly congested. When he referred she brushed it off, as she said three other babies that morning had referred, and decided she would try again in a little while.
She came back four or so hours later, and tried again. Again he referred. "It's no big deal" she said, "babies quite often refer due to fluid from being in the womb, and he's being quite squrimy. They'll bring you back in a month to try again."
That was fine, we finally got our discharge, and we left.
I won't go in to full details on the whirlwind that was our first few weeks at home, but suffice to say it entailed lots of missing sleep, lots of time trying to get O to nurse, two ER trips [one for me as my legs ballooned and one for O because my little squirmer tore his umbilical cord], several trips to the breastfeeding clinic, a visit to our doctor, and appointments with a speech language pathologist because O was having issues with his latch.
It was during a follow up visit with the SLP around the one month mark that I mentioned we had never heard back with an appointment for the hearing test. She decided since we were there already and it was sort of quiet to quickly grab the main assistant in the audiology dept.
Not more than five minutes later she came to run the test. Again O was fairly squirmy and kept referring. The assistant decided to bring us back again in a week to do an ABR [Auditory Brainstem Response]. On our way out she had an audiologist quickly run a tympanometry to check for any fluid in his ears. This is a simple test, again with headphone looking things inserted into the ear to push air in checking for proper eardrum movement. One was showing acceptable movement, one was not.
The next week we were back again, with a sleepy cranky baby.
On our way in for the ABR they decided they wanted to run another tympanometry to check for any fluid in his ears. This time the opposite ear had less than ideal movement. It came as no surprise, when forty-five minutes later the results from the ABR were again referred.
An audiologist came in and talked to us about it. She seemed fairly positive and so I remained positive as well. She told us they would like to do a bone vibration test, essentially bypassing O's middle ear to check for hearing loss. This test, she said, requires two audiologists so may be trickier to book. They would do their best to get us in as soon as possible.
O was born during a particularly busy period for the maternity ward. The day I went in I was alone in Labour & Delivery. But by the time I had given birth there had been four more babies born. Three more followed shortly after.
 |
| My sweet squishy boy shortly after birth |
It should be no surprise then that our nurse was run completely off of her feet. And visibly pregnant. When she came to do the first attempt we mentioned our concern over O being slightly congested. When he referred she brushed it off, as she said three other babies that morning had referred, and decided she would try again in a little while.
She came back four or so hours later, and tried again. Again he referred. "It's no big deal" she said, "babies quite often refer due to fluid from being in the womb, and he's being quite squrimy. They'll bring you back in a month to try again."
That was fine, we finally got our discharge, and we left.
I won't go in to full details on the whirlwind that was our first few weeks at home, but suffice to say it entailed lots of missing sleep, lots of time trying to get O to nurse, two ER trips [one for me as my legs ballooned and one for O because my little squirmer tore his umbilical cord], several trips to the breastfeeding clinic, a visit to our doctor, and appointments with a speech language pathologist because O was having issues with his latch.
It was during a follow up visit with the SLP around the one month mark that I mentioned we had never heard back with an appointment for the hearing test. She decided since we were there already and it was sort of quiet to quickly grab the main assistant in the audiology dept.
Not more than five minutes later she came to run the test. Again O was fairly squirmy and kept referring. The assistant decided to bring us back again in a week to do an ABR [Auditory Brainstem Response]. On our way out she had an audiologist quickly run a tympanometry to check for any fluid in his ears. This is a simple test, again with headphone looking things inserted into the ear to push air in checking for proper eardrum movement. One was showing acceptable movement, one was not.
The next week we were back again, with a sleepy cranky baby.
On our way in for the ABR they decided they wanted to run another tympanometry to check for any fluid in his ears. This time the opposite ear had less than ideal movement. It came as no surprise, when forty-five minutes later the results from the ABR were again referred.
An audiologist came in and talked to us about it. She seemed fairly positive and so I remained positive as well. She told us they would like to do a bone vibration test, essentially bypassing O's middle ear to check for hearing loss. This test, she said, requires two audiologists so may be trickier to book. They would do their best to get us in as soon as possible.
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