Partial Recovery!

So much has happened in the last few days...where to start...

After the adventure that was Wednesday, we got up Thursday morning and got on with the day...Jonica was going to Kindy again, the boys and I were going to meet friends...when I noticed at breakfast, with hearing aids in, that Jonica seemed to be hearing and interacting with Kaelen across the breakfast table, about 3ft! I asked her if she could hear me, and she nodded. I asked her if she could hear Kaelen, and she nodded! She could hear something! To confirm *what* she was hearing I did a quick hack Ling sound test - put my hands in front of my face so she couldn't see my mouth - and she correctly identified 5 out of 7 sounds!

Recovery!

I can't describe the relief that I felt in that moment. Although I knew it could go again as quickly as it returned, I was just thankful that something had returned! I kept an eye on her through the morning and noticed that at about 5m there was still no response, so she clearly didn't have everything back, but she was no longer in her own little world, she was chatting again, and you could have a conversation with her at about 1m. I still gave her the medication as prescribed, but was pleased to be able to tell Kindy that she was doing better that day. 

We kept our Aus Hearing appt as scheduled on Friday, cos I knew she wasn't 100%, I knew she hadn't got everything back, so it was important that we knew exactly what she did have so we knew where to go from here. She was brilliant at the test and listened very well for a long time, they got full air conduction results for both ears...and what they found was somewhat unexpected.

Her right ear, the one with the fluid behind the eardrum, appears to have recovered to the same levels as before the drop on Monday, the only variation being what they would expect from fluid behind the eardrums. But her left ear, the one with no fluid, was 20-40db down across all frequencies. This means that her best frequency in that ear is 80db, which is about as loud as a shopping centre food court. All other frequencies were 100db or worse, akin to a domestic vacuum cleaner. No wonder she wasn't hearing anything on Tuesday & Wednesday if both ears were anything like that! Of course we don't know what her right ear really did on Tues & Wed, but she was so unresponsive that it would be hard to imagine it was much different to the left ear.

So the next step is to confirm these levels in a week or so, and if they seem to be permanent then we have some decisions to make. At those levels in her left ear, a hearing aid is pretty much useless. If those levels don't improve before the next test, we are looking at having to consider a cochlear implant for her left ear. A whole new learning curve for me!

If her left ear recovers fully before the next test, I would be somewhat hesitant to go for an implant. Yes, her hearing fluctuates somewhat, and consistent hearing is important for speech & language development. But if this is all it is, 5 bad days every 2 years which then recover, I'd have to think very carefully about the decision to implant. Implants are fantastic for those who need them, but they do destroy all remaining natural hearing in the ear. That's fine if there is really none to work with anyway, but in Jonica's case, if this was how it kept going with just a few bad days every couple of years, I'd be very hesitant to blow away her residual hearing too soon. 

Not much to do about it now...just wait and see. I'm in Tasmania with Kaelen this week anyway, visiting my sister and her children, so plenty else to do and think about!

Next appt: Mon 28th April 11am - Aus Hearing follow-up for Jonica

Where does it go?

My posts seem to be fewer and further between these days, and for me that's a good thing. That means that things are stable, kids are moving along, doing what they're supposed to be doing, and life is generally good. I guess that means too that the creation of a post signals bad news...

There have been some adventures. Jarrah has had ongoing ear infections again, all in the left ear, so he spent most of 2013 with only one hearing aid in. He still had a grommet in that ear, so once it was removed things settled down quite a lot. I think there's still a hole in the eardrum (better check!), but that is apparently closing over so we seem to have avoided the need for further surgery there.

Kaelen is stable as ever. His language is progressing nicely, his intelligibility is improving, he's loving Prep and has recently taken to the piano. He's very self-motivated (when he wants to be!) so has made excellent progress in a short space of time for a little guy, and was sure to point out to me the other day a note on our piano that has gone out of tune with recent wet weather. His (amplified) ears work just fine!

Jonica has been doing incredibly well. Her hearing had settled after the last drop 2 years ago, and although she has very little hearing in the high frequencies (4kHz = 90-110db), she's been doing amazing things with what she has. Both her speech pathologist and her teacher of the deaf have been quite surprised at what she can do/hear/say, given the nature and shape of her loss. She's started using possessive pronouns which involve an 's' sound on the end, she's been putting lots of nice 't' sounds on the ends of words and we've been working on 'f' and 's' at the start of words - much more difficult and perhaps a little advanced for a hearing-impaired child of her age, but better to make her aware of it now rather than wait til there's a problem.

Well, now we have a problem. On Monday evening she said to me suddenly, "Mummy, my ears are quiet!" The kids normally say this if their batteries are low (or dead!), so i checked her hearing aids - nope, they seemed to be working fine, no blockages, batteries were fairly new. She hasn't always been reliable with this, so I didn't think too much of it. However, the next morning as we were having breakfast, I noticed that she was having real trouble understanding me, with words and sounds that she hasn't struggled with before. Then as we were getting ready for Kindy etc., I called to her a couple of times in ways that would normally have been fine and there was no response. Hmmm... I mentioned to Kindy that I thought she wasn't hearing too well, and to please use lots of gesture and tap her shoulder to get her attention etc. They were grateful for the warning, and agreed at pickup time that there was definitely something not right.

It wasn't until I really put some effort into observing her and our interactions that I discovered how bad things really were. In the morning I had called to her from about 4 feet away and got no response at all. In the evening Jarrah sat at the table less than 3 feet from her and started talking to her - no response. He moved closer, less than 2 feet away, and spoke loudly. Some response, but no real understanding of what he had said. After her bath but before I put her hearing aids back in, I called her from about 1 foot away, no response. I immediately put her hearing aids in and tried again, this time with some response - which means she looked up at me! We brushed her hair and I spoke point blank into her hearing aid; she understood some of what I said. The cat came into the room, meowing for his dinner, and he's a pretty noisy cat. She couldn't hear him. This morning we got out her little violin, she had a turn then I had a turn. She got quite upset when she couldn't hear me playing from about 1.5 feet away.

Oh dear.

I had a look in her ears to find quite a bit of wax. Knowing that the GP wouldn't do anything about it, I decided it was best to try to see our ENT as soon as possible to (a) get the wax cleared out, and (b) rule out any other medical issues which might have caused such a loss. Our ENT is a champion. I left a message on their answering machine at 8am, and at 9am they were calling me with a squeezed-in appointment. I had to almost jump down the phone at the GP's receptionist to get them to fax a referral through TODAY rather than jump through their hoops, but the ENT's receptionist asked no questions, just immediately offered a time. Today! Wonderful. Exactly what the Dr ordered...

ENT managed to get all the wax out without even a flinch from MissJ! Found some fluid behind one eardrum but nothing else obvious to cause such a change. Gave us some antibiotics for the fluid and a short course of steroids as an anti-inflammatory...and recommended an urgent hearing test. I had notified Aus Hearing of our situation before seeing the ENT and they had already mentioned an urgent review so that was my *next* phone call after the ENT appointment! Friday 8:15am. Excellent.

So, where does all this leave us?

* Daddy is currently overseas, arrives home midnight Friday
* At 1pm Friday, Kaelen & I fly to Tasmania to spend a week with my sister and her children, so Jonica & Jarrah will be looked after by my parents for some amount of that time
* Hearing test Friday will tell us more exactly where things are at, and how far her current hearing aids will stretch
* In the back of my mind is the possibility of Jonica needing cochlear implants.

Last time her hearing dropped, 2 years ago, it did appear to recover somewhat after about a week. There is no guarantee that this will or will not happen this time. All fluctuating hearing loss is unpredictable, both in time and magnitude, so there is every chance that she will never recover from this, just as much as there is every chance that she will. But we don't know if, or when. Her speech was already affected less than 24hours later, I can see some of her auditory memory is not quite secure enough yet for her to have full use of all the language she normally uses, and she's not chatting like she normally does when she plays. This afternoon we were at a friend's house after seeing the ENT, and she was playing by herself in another room, completely silent. Normally we can hear her very easily and can tell exactly what she's doing, but not today.

Where does it go?

When a deterioration like this happens, where does the hearing go? I know that's a stupid question, but there has to be some half-reasonable answer. Something must change, or cause a change, which impacts her hearing. What is going on?

Stay tuned for the next instalment...and huge thanks to my friend mc for offering unprompted to look after the boys while Jonica and I went to the ENT today. So much easier with 1 child than with three, as she well knows, so THANKYOU!


Next appt: Friday 11th April 8:15am Aus Hearing