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

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

Computerised Tomography...

Thurs 19th June

Today was a day of many firsts. Jonica's first admission to hospital, her first General Anaesthetic, her first CT scan, our first glimpse into what might be going on inside her head that may be causing her hearing loss, and causing it to drop...and Daddy's first day on unemployment. Daddy took her to the hospital for their 6:45am check-in (!) while I got the boys to school and thought about going to work. Ended up taking my first day off sick for this job, so I went back home to bed.

Sounds like she was one of the first children in, as she was in recovery by 9am. I had held some concern for her reaction to the GA, as I have a tendency to drastically oversleep. My sister did too as a child, and although she appears to now be fine as an adult, and both our boys have been fine, I was just unsure about what was going to happen for Jonica. Thankfully, she was soon awake and hoovering the jelly and ice cream they gave her!

We will need to visit the implant surgeon again to get results for the scan, but at least it's done!

Today, Tues 24th June, was meant to be our next speech appt at Mater, but the speechie called in sick. We've rescheduled for Thurs 3rd July, so I suspect that will delay our progress slightly. Never mind...

Next appt: Thurs 3rd July Mater speech pathology

Ok, this is just getting weird...fingernails!

We noticed these little beauties on Jonica's fingernails some time during May...

They were on both thumbs, both middle fingers, one ring finger, a very mild one on one little finger...and then they appeared on both big toes and a random selection of other toes. Did you know that fingernails grow at approx 0.1mm per day? And toenails at approx 0.03mm per day? Well now I do, and when we measured these marks and did the maths, they would appear to line up fairly closely with the time surrounding when her hearing dropped. Hmmm...

Since this photo, this thumb nail has come off completely, as has one of the middle fingers. Her big toes will come off as they are completely detached across the nail plate, and I think she may lose a few others too. They will grow back, but it's interesting that they seem to correspond to a change in hearing. Makes me wonder if they are connected. Did I ever mention Heimler syndrome? More research required, methinks.

Back on track

Tuesday 10th June - Mater speech & audiology

Today was Jonica's first dedicated speech pathology appt at the Mater. Last time was a general introduction to the whole situation, this time the speechie began the battery of tests and assessments which would tell us how her speech and language is developing.

Really, she did remarkably well. Very often with these tests they continue until the child responds incorrectly 3 times in a row. There were a number of occasions when Jonica gave 2 incorrect responses in a row and I thought, "this is it, she's going to finish here...", and then she'd get the third one correct! Some of them were quite complex sentences and I really wasn't sure that she'd understand them...but she did!

There are more tests required than they can do in one session, so we'll be back on Tues 24th June to complete the rest. Good thing I was only working Tuesdays until Easter! Really, the further through this we get the more I see the Lord's timing in everything. I don't know what you believe about God and spiritual things, but every day I live I'm seeing more and more evidence for the existence of a personal God who loves me, loves you, and takes a very close interest in the happenings of our lives. I know that not everyone will agree with me, and I'm not here to argue with anyone, but the last 18 months of my life has for me contained too many "coincidences" for them to remain coincidences. It's so easy to miss what God is doing in our lives, but once you start to see Him, He's everywhere!

So, back to the Mater...we had a quick morning tea break after speech, and then it was on to audiology. The purpose of today's audiology was to confirm last appt's results, test her aided thresholds (what she responds to with hearing aids in) and do some speech perception tests to see how she processes words and sentences with each ear. We did speech perception first, with only her right hearing aid in. As expected, she did very well and made very few errors. Next was left hearing aid only...which of course was a very different story!

We did notice a change in Jonica's speech soon after the last Mater appt. She had lost many "s" sounds and other things since the drop, so it was quite noticeable when, about 2 days after the last Mater test, she came home from Kindy putting S's on the ends of words again! Over the next few days I noticed that some words were getting their middle S's back again too, like "horsey" which had devolved into "hor-hee". I wondered if her hearing had changed again, so I was curious to see what happened by this appt.

Her left ear started off *terrible*, but then about half way through the test we began to see some correct responses. The further through the test we went, the more her left ear seemed to "tune in" and she gave more correct responses! I know it's no substitute for further intervention, but it was very interesting to see what her left ear was *really* able to do with some effort. There had been talk about, post-implant, giving her some time each day with just her implant, without the right hearing aid, to encourage that ear to really work. Now I'm wondering if we should have been doing that with this left ear since the drop! To see such a remarkable improvement in such a short space of time was incredible, made me wonder just how lazy her left ear was getting.

Next was aided thresholds. Very similar to regular testing, but through a speaker and with hearing aids in. For her right ear, most responses were in the 20-40db range (I think, working from memory here 2wks later!) but her 4kHz was 50db. The audiologist was surprised to see the 4kHz's there at first, but then remembered that her right ear 4kHz is fairly poor anyway, around 100db. Her left ear was generally above 50db, even up as high as 75-80db. That means that even with her hearing aid in, she has a severe loss in her left ear!

Finally, we repeated the regular tests from last time, only in the left ear. Interestingly, although her results were mostly within margin of error of last time, they were all slightly better. For me, the best one was 4kHz; last time there was no response, today she responded at 115db! Ok, it's not much, but there was something there rather than nothing! Doesn't change the game plan, but perhaps explains the improved speech.

A huge day...back home on the bus, pizza for lunch, time for a rest...

Next appt: Thurs 19th June CT scan

Oops...a dental interruption!

Thurs 5th June

Kaelen came home today saying he had a sore tooth, that someone had knee'd him in the mouth at school. Hmmm, not what you want to hear from a Prep class. Had a look and it looked very much like the tooth had been broken off, and the area was clearly inflamed and slightly bloody. Looks like we need a trip to the dentist!

Managed to get an appt at 11am the next day, so off we went. They took an x-ray, which showed that the tooth had in fact been impacted, pushed back further into the gum. We could also see the adult teeth underneath, and the root of the baby tooth was very close to it. So, on dentist's advice, poor Kaelen had to lose his first baby tooth by extraction! 

Here's the impacted tooth...

And here's the resulting gap...

The joys of boys :-)