Today is the 31st of July, which means that tomorrow is August. If there's one rule I've learned in life, it's that August is always busy. Always! About a month ago I remember looking through my calendar for August and noticing how empty it was. "But August is always busy," I told myself. "I wonder what will fill it this year?"
I feel like we're standing on precipice, on the very edge of an amazing, exciting journey. There's anticipation, excitement, trepidation, some fear of the unknown, just as there is with any journey. For us this is of course not so much a locational journey as an educational one. We're about to enter the unknown, through a curtain and into a new room, walking in places we have not yet explored. It's daunting, overwhelming, but exciting and filled with wonder and mystery. What will it be like? What will she be like?
Ask me when August's over...
Thursday, July 31, 2014
Tuesday, July 29, 2014
The diary is filling up...
So today I made 3 more appointments, all for September! Argh! OK, so i knew it would be like this, but walking it out is another thing altogether! My coping strategy is to rehearse the schedule in my head in the weeks leading up to it all, so at the moment my head contains this much:
This week - normal week, dinner with Keith's Mum on Friday, catch up with my parents sometime over the weekend.
Next week - Monday is my sister's birthday. Keith & Jonica go to Toowoomba for her teeth on Monday, come home Tuesday, so i have boys on my own monday night but some kid-free time on Tuesday (yay!). My parents also leave on a 4wk holiday on Tuesday. See how Jonica goes re:Kindy on Wed & Thurs. Work Wed & Thurs. Catch up with friends on Sat.
The next week - IMPLANT SURGERY Monday, stay overnight, home Tuesday, Ekka holiday Wednesday, see how she goes for Thurs as to whether or not she goes to Kindy / I go to work. Jarrah has a school excursion on Friday.
The next week - Kaelen has a school excursion on Tuesday, the same day as Jonica's post-op appointment. Visit MOPS on Wed, work Thurs.
The next week - String Festival at work Mon & Tues afternoons. Work Wed & Thurs. That's enough for now
The next week - Tues 2nd Sept SWITCH-ON! We get to find out what Jonica thinks of the sound she gets from her implant... Work Wed & Thurs. My parents arrive back home.
The next week - CI Mapping appt Tues, work Wed & Thurs.
The next week - work Wed & Thurs, last week of school term
The next week - CI Mapping appt & Aus Hearing appt for Jonica
The next week - Jonica turns 4!
And that's about where my mental calendar ends right now...but i think that's enough! I got the call about the switch-on date today, as well as the next two mapping appts, and I know that speech therapy will kick in pretty soon after all that, but that can wait. For now I just keep going over the next two weeks, who's going to be where, who's taking whom where and when, in the hope that when it comes to it I won't forget anything! And also that it helps me take it in my stride and not be overwhelmed by it all. That's the plan!
Next appt: Dental surgery @ Toowoomba, Tuesday 5th August. That's next week!
This week - normal week, dinner with Keith's Mum on Friday, catch up with my parents sometime over the weekend.
Next week - Monday is my sister's birthday. Keith & Jonica go to Toowoomba for her teeth on Monday, come home Tuesday, so i have boys on my own monday night but some kid-free time on Tuesday (yay!). My parents also leave on a 4wk holiday on Tuesday. See how Jonica goes re:Kindy on Wed & Thurs. Work Wed & Thurs. Catch up with friends on Sat.
The next week - IMPLANT SURGERY Monday, stay overnight, home Tuesday, Ekka holiday Wednesday, see how she goes for Thurs as to whether or not she goes to Kindy / I go to work. Jarrah has a school excursion on Friday.
The next week - Kaelen has a school excursion on Tuesday, the same day as Jonica's post-op appointment. Visit MOPS on Wed, work Thurs.
The next week - String Festival at work Mon & Tues afternoons. Work Wed & Thurs. That's enough for now
The next week - Tues 2nd Sept SWITCH-ON! We get to find out what Jonica thinks of the sound she gets from her implant... Work Wed & Thurs. My parents arrive back home.
The next week - CI Mapping appt Tues, work Wed & Thurs.
The next week - work Wed & Thurs, last week of school term
The next week - CI Mapping appt & Aus Hearing appt for Jonica
The next week - Jonica turns 4!
And that's about where my mental calendar ends right now...but i think that's enough! I got the call about the switch-on date today, as well as the next two mapping appts, and I know that speech therapy will kick in pretty soon after all that, but that can wait. For now I just keep going over the next two weeks, who's going to be where, who's taking whom where and when, in the hope that when it comes to it I won't forget anything! And also that it helps me take it in my stride and not be overwhelmed by it all. That's the plan!
Next appt: Dental surgery @ Toowoomba, Tuesday 5th August. That's next week!
Saturday, July 26, 2014
I hate fluctuating hearing loss...can I just make that clear?
Yep, let's get it out there right now. Fluctuating hearing loss sucks. Not sure which is worse, fluctuating hearing or deteriorating hearing. They *both* suck! You can just never tell from one day to the next what you're dealing with! And this makes raising kids rather tricky, as if it wasn't tricky already...
So Friday morning, I decided to test Jonica's Ling sounds again, just like Thursday. Hearing aids in, I stood in the same place...and she detected everything! Which is good, it means she's probably hearing pretty well, and certainly better than Thursday, but I just wish it would decide to be somewhere and jolly stay there! Through the morning it became clear that she was hearing almost "normally" - normally for her, as of Wednesday morning - although there were still a couple of times she missed things that I would have expected her to get.
So, what to do? I decided to take her to the retail chain anyway, just in case something showed up that I should do something about. My beautiful friend mc accompanied us. I had asked her to come on Thurs as I wasn't sure how I was going to handle another large drop with everything else going on, but given the fact that Jonica's hearing seemed to have recovered I now wasn't expecting any huge surprises. The people at the retail store were wonderful, very helpful and took our situation in their stride. Sadly their test only went to about 80dB, but that was enough to show us that there was perhaps a small change in the 1kHz region, but nothing that warranted panic. *Phew!*
Today was even better. Well, Jonica was a bit unwell today, ran a slight temperature most of the day, but she seemed to be hearing very well. Even in the evening when her temp was highest, Daddy and I both noticed she was hearing well, I'd say back to Wednesday morning levels. Good!
So, I've notified Aus Hearing just so they know, and I plan to inform our implant surgeon on Monday, just so everyone knows what's going on. As I've said before, 2 bad days every 2 years or so I can cope with, but if it starts to be 2 bad days every 2 months...? How bad do we let this get before we take more drastic measures? There are no easy answers, of course...which is why we just take one step at a time, and just do the next thing...
So Friday morning, I decided to test Jonica's Ling sounds again, just like Thursday. Hearing aids in, I stood in the same place...and she detected everything! Which is good, it means she's probably hearing pretty well, and certainly better than Thursday, but I just wish it would decide to be somewhere and jolly stay there! Through the morning it became clear that she was hearing almost "normally" - normally for her, as of Wednesday morning - although there were still a couple of times she missed things that I would have expected her to get.
So, what to do? I decided to take her to the retail chain anyway, just in case something showed up that I should do something about. My beautiful friend mc accompanied us. I had asked her to come on Thurs as I wasn't sure how I was going to handle another large drop with everything else going on, but given the fact that Jonica's hearing seemed to have recovered I now wasn't expecting any huge surprises. The people at the retail store were wonderful, very helpful and took our situation in their stride. Sadly their test only went to about 80dB, but that was enough to show us that there was perhaps a small change in the 1kHz region, but nothing that warranted panic. *Phew!*
Today was even better. Well, Jonica was a bit unwell today, ran a slight temperature most of the day, but she seemed to be hearing very well. Even in the evening when her temp was highest, Daddy and I both noticed she was hearing well, I'd say back to Wednesday morning levels. Good!
So, I've notified Aus Hearing just so they know, and I plan to inform our implant surgeon on Monday, just so everyone knows what's going on. As I've said before, 2 bad days every 2 years or so I can cope with, but if it starts to be 2 bad days every 2 months...? How bad do we let this get before we take more drastic measures? There are no easy answers, of course...which is why we just take one step at a time, and just do the next thing...
Thursday, July 24, 2014
So much happens in 48hrs...
My goodness, where to begin...at the beginning, i suppose. Clarification: this appointment was not implant surgery itself, just a post-scan consultation at which we would choose a future date for surgery. Sorry if that was unclear.
Before I get started, I just wanted to day thanks to everyone who reads these posts, and especially to those who comment or send me messages. We really appreciate your support and your company on this journey!
So, 8:15am surgeon's appointment...which turns out to be 8:45am in real life...and it's all systems go for surgery. Now to find a date. We have two choices, one in early Aug or one in early Sept. I then mention that she has some dental work to be done as well (see this post), and ask if there would be a possibility of doing both teeth and implant at the same time. The answer is an emphatic 'NO', for very good health reasons, and in fact he'd really prefer it if her teeth were done first.
Right!
So they're happy to hold both dates for us, get paperwork going and fill in the date later, if we can tell them asap which date we want. This of course is now going to depend on when i can get her teeth done! So we leave that appointment and while walking back to the car i get on the phone to the dental people.
It's been about 3 months since we've seen the dental people, and i've deliberately put them on hold for a bit because of the implant, thinking we could do the teeth afterwards. I also happen to know that the dental surgeon we saw has left the practice, so we're going to have to go with someone else, suddenly! I explain all this to the dental people, who are very good actually, look at the file and decide that the quote from 3 months ago is probably still good and they'll go ahead and book the surgery for us. Now, dates...hmmm, late Aug in Brisbane...not exactly what I had in mind...or very early Aug in Toowoomba.
Toowoomba.
OK, so now this turns into a whole new thing. Do we get the teeth done quickly (in Toowoomba) so that we can get the implant in Aug, which is actually my preferred time because I can more easily take time off work that week than Sept, or do we do teeth in Brisbane and delay the implant til September?
What would you choose?
Of course there is no right or wrong answer, so we've ended up choosing to get her teeth done in Toowoomba and have the implant done earlier rather than later, mainly because it will be easier for me to take time off work then even though it will make it a crazy busy time. It also gets her implant in nearly a month earlier, which is an extra month of rehabilitation before school, which just gives her that extra month's chance of being ready before school begins in 2016. I know, a long way away, but we just don't know how quickly this left ear is going to pick up, if at all. I don't feel like we have no time, but I also don't feel like we have much to waste either.
So, Tuesday 5th August will see Daddy and Jonica checking in to day surgery at a hospital in Toowoomba, and returning with 4 stainless steel crowns on her 2yr-old molars to hold them together. Then the next week, Monday 11th August will see Mummy and Jonica checking in to a Brisbane hospital for an overnight stay, and coming home with an amazing Australian device in her head, ready to bring the world of sound back to her left ear. What a week! And then the follow-ups. And then therapy begins...
Well we thought we had that sorted. Which it is, but then you can just never tell what's around the corner. I picked Jonica up from Kindy yesterday afternoon, and as we got in the car she began crying and saying that her ears weren't working, either of them. I checked both hearing aids, yes they were working quite fine...but every time i put them in she'd scream and cry and insist they weren't working and that she couldn't hear me. What?!? Finally i left them out for a bit, cos there was no convincing her otherwise. We travelled to our next stop in the car, and once she calmed down, she didn't speak. Hmmm. That's quite unlike my little chatterbox, as was the reaction to her hearing aids...
Got to our next destination, attempted to put the hearing aids in again, same reaction. Wow, this was really serious. I began to wonder if that right ear had dropped again. How could i tell? I wish you could get a home hearing test kit. I've got to make it up as i go a little bit, but i'm slowly working out ways of observing how well my kids are hearing in given situations. We got inside to a quiet area and i asked her a few questions. To some she gave rubbish answers, but some she answered correctly. Argh! Hard to tell if she was honest or mucking around. She was clearly quite tired, so responses were going to be unreliable at best anyway.
Checked her again this morning, and I think there's been a change. Pest. Tested the Ling sounds at 1m with both hearing aids and she failed to even detect at least 2, maybe 3 of the sounds (can't remember, brain's a bit full atm!). She normally can hear them all with both hearing aids in. But still she's patchy, seems to hear some things but not other things...how am i gonna nail this one down?!? Emailed Aus Hearing today, just to let them know there may be something afoot. And then, it came to me! There's a retail chain of audiology services here in Australia that park themselves in shopping centres and do free hearing tests. Aha! If I take her to one of those and see if she'll do the test, then compare the result to her latest audiogram from Aus Hearing or Mater (if it's detailed enough), I should be able to see if anything's changed! Then if it has, i can go straight to Aus Hearing, results in hand, and hopefully get something moving if necessary. What a plan!
So guess what I'm doing tomorrow...I'll let you know how it goes...
Next appt: Tues 5th August, Jonica's Dental Surgery in Toowoomba
Before I get started, I just wanted to day thanks to everyone who reads these posts, and especially to those who comment or send me messages. We really appreciate your support and your company on this journey!
So, 8:15am surgeon's appointment...which turns out to be 8:45am in real life...and it's all systems go for surgery. Now to find a date. We have two choices, one in early Aug or one in early Sept. I then mention that she has some dental work to be done as well (see this post), and ask if there would be a possibility of doing both teeth and implant at the same time. The answer is an emphatic 'NO', for very good health reasons, and in fact he'd really prefer it if her teeth were done first.
Right!
So they're happy to hold both dates for us, get paperwork going and fill in the date later, if we can tell them asap which date we want. This of course is now going to depend on when i can get her teeth done! So we leave that appointment and while walking back to the car i get on the phone to the dental people.
It's been about 3 months since we've seen the dental people, and i've deliberately put them on hold for a bit because of the implant, thinking we could do the teeth afterwards. I also happen to know that the dental surgeon we saw has left the practice, so we're going to have to go with someone else, suddenly! I explain all this to the dental people, who are very good actually, look at the file and decide that the quote from 3 months ago is probably still good and they'll go ahead and book the surgery for us. Now, dates...hmmm, late Aug in Brisbane...not exactly what I had in mind...or very early Aug in Toowoomba.
Toowoomba.
OK, so now this turns into a whole new thing. Do we get the teeth done quickly (in Toowoomba) so that we can get the implant in Aug, which is actually my preferred time because I can more easily take time off work that week than Sept, or do we do teeth in Brisbane and delay the implant til September?
What would you choose?
Of course there is no right or wrong answer, so we've ended up choosing to get her teeth done in Toowoomba and have the implant done earlier rather than later, mainly because it will be easier for me to take time off work then even though it will make it a crazy busy time. It also gets her implant in nearly a month earlier, which is an extra month of rehabilitation before school, which just gives her that extra month's chance of being ready before school begins in 2016. I know, a long way away, but we just don't know how quickly this left ear is going to pick up, if at all. I don't feel like we have no time, but I also don't feel like we have much to waste either.
So, Tuesday 5th August will see Daddy and Jonica checking in to day surgery at a hospital in Toowoomba, and returning with 4 stainless steel crowns on her 2yr-old molars to hold them together. Then the next week, Monday 11th August will see Mummy and Jonica checking in to a Brisbane hospital for an overnight stay, and coming home with an amazing Australian device in her head, ready to bring the world of sound back to her left ear. What a week! And then the follow-ups. And then therapy begins...
Well we thought we had that sorted. Which it is, but then you can just never tell what's around the corner. I picked Jonica up from Kindy yesterday afternoon, and as we got in the car she began crying and saying that her ears weren't working, either of them. I checked both hearing aids, yes they were working quite fine...but every time i put them in she'd scream and cry and insist they weren't working and that she couldn't hear me. What?!? Finally i left them out for a bit, cos there was no convincing her otherwise. We travelled to our next stop in the car, and once she calmed down, she didn't speak. Hmmm. That's quite unlike my little chatterbox, as was the reaction to her hearing aids...
Got to our next destination, attempted to put the hearing aids in again, same reaction. Wow, this was really serious. I began to wonder if that right ear had dropped again. How could i tell? I wish you could get a home hearing test kit. I've got to make it up as i go a little bit, but i'm slowly working out ways of observing how well my kids are hearing in given situations. We got inside to a quiet area and i asked her a few questions. To some she gave rubbish answers, but some she answered correctly. Argh! Hard to tell if she was honest or mucking around. She was clearly quite tired, so responses were going to be unreliable at best anyway.
Checked her again this morning, and I think there's been a change. Pest. Tested the Ling sounds at 1m with both hearing aids and she failed to even detect at least 2, maybe 3 of the sounds (can't remember, brain's a bit full atm!). She normally can hear them all with both hearing aids in. But still she's patchy, seems to hear some things but not other things...how am i gonna nail this one down?!? Emailed Aus Hearing today, just to let them know there may be something afoot. And then, it came to me! There's a retail chain of audiology services here in Australia that park themselves in shopping centres and do free hearing tests. Aha! If I take her to one of those and see if she'll do the test, then compare the result to her latest audiogram from Aus Hearing or Mater (if it's detailed enough), I should be able to see if anything's changed! Then if it has, i can go straight to Aus Hearing, results in hand, and hopefully get something moving if necessary. What a plan!
So guess what I'm doing tomorrow...I'll let you know how it goes...
Next appt: Tues 5th August, Jonica's Dental Surgery in Toowoomba
Tuesday, July 22, 2014
Last minute change!
Received a phone call today from the implant surgeon - they have a cancellation at 8:15am tomorrow, so our appointment for next Monday 28/7 has been brought forward to tomorrow, Wed 23/7. A whole 5 days! Not as much as I was hoping, but at least the waiting is almost over. By this time tomorrow, we'll know when Jonica will get her implant!
Next appt: Implant surgeon, TOMORROW Wed 23rd July
More speech, and an informative phone call...
Finally, our final speech assessment! Lots more listening, more words, more sentences, some copying, which she hates...but I felt confident Jonica's responses were pretty indicative of her true abilities. She's pretty co-operative and is reliable with her responses, so she's pretty easy to assess.
The speechie had scored her first round of tests, and she was mostly in the average range! This is amazing considering how much hearing she doesn't have, but she has always outperformed her audiogram and her language development has always been excellent so in ways I wasn't surprised. Comprehension was in the average range, Word Structures was mildly delayed (mostly due to missing S's off the ends of words) and Expressive Vocab was in the average range. Quite pleased :-)
Earlier this same week, on Tues 1st July, I received a phone call from our implant surgeon with results from Jonica's CT scan. As it turns out, Jonica has what's called Enlarged Vestibular Aqueduct on both sides, and also the Mondini defect on both sides. EVA I had fully expected, but the Mondini was quite a surprise. A brief explanation...
EVA... There's a small bony canal & lymphatic duct in your head that runs from the inner ear towards the brain cavity, and there's a lymphatic sac between the skull and the lining of the brain. When the little canal is slightly larger than normal, the fluid in the sac can flow back towards the inner ear which it's not supposed to do, and a hearing loss occurs. One of main characteristics of EVA is a deteriorating hearing loss, usually in sudden, large changes and sometimes with recovery but sometimes not. Head trauma can be a catalyst, even a mild bump. This is exactly how Jonica's hearing loss has progressed, so I fully expected EVA to show up on the scan.
Mondini defect...the cochlea is a tiny, snail-shell-shaped organ in the inner ear which contains all the small hair cells which detect and transmit sound to the brain via the relevant cranial nerve (cranial nerve VIII, for those who are interested). A normal cochlea has 2.5 turns, but one with the Mondini defect only has 1.5 full turns, leading to hearing loss. This condition is not necessarily inherited, it's usually due to an interruption to development of the inner ear in about the 6th week of pregnancy. It seems that Mondini and EVA tend to travel together, so at this stage it's a bit hard to tell if one caused the other or if they just happen to both be present in this case.
So, we have a clear reason for her hearing loss. There still may be a genetic component, but we haven't had genetic testing done yet so we won't know until we have that done. We also have some ideas about how to preserve the hearing she has left, and thankfully she's not a very bump-my-head kind of kid. Now we just have to wait for an appointment with the surgeon to do paperwork and arrange a surgery date...currently scheduled for 28th July, although we're on there cancellation list in case something comes up sooner!
Next appt: Mon 28th July, Implant Surgeon
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