There's recent pictures, organized by month (newest at the top) at the Photo Gallery link to the right. If you take pictures of our boy and want them up here, just send them to me in the best quality you have and I'll add them to a gallery.
Cochlear Implant Activation (September 6, 2007)
Well, I'm a bit tired, but long story short. His first day wearing his processor with it turned on has gone very well.
We had 2 hours at the hospital getting the MAPing (programing) done. 20 of his 22 electrodes are working well. That is a good result. He only really needs about half to get some good hearing. He tolerated a good dynamic range too - 15.
Most importantly, he is willing to wear the thing. We tried putting it on him without turning it on over the past few weeks. It didn't go well, so I wasn't sure if he would even make it through the programming. But he seems interested in the sounds. He did have a few moments where he was upset by it all, but he was able to be jollyed up pretty easily and quickly.
He wore it for about an hour after the session, and has had it on since he woke up from his nap at 3:30 pm. We just took it off to give him a bath. We'll put it back on when he's dry again.
He has lots of distraction with Nana Linda and Grandad Peter playing with him all afternoon. Tomorrow will be a new challenge with just Mom.
We've been given 4 programs. The first one is very soft. If things go well tomorrow, I might try program number 2 for a bit. But there is no real hurry, we'll take our time. The audiologist said he might get tired from all the new stimulation - more motivation for me to keep it on!
cheers,
gd
and from Grandpa Kit... (lots of pictures.... click here)
It's very difficult to know what to write to tell you about Merlin's much anticipated "turn-on" day. In many ways it was not an 'exciting' event to try to describe, but here goes...
We all travelled to the hospital in the Hellenius' van which was a great idea. Rob's parents, Peter and Linda drove down from PG mostly just for this event.
We all (six adults and Merlin) went up to the conference room and met Robert the CI clinician and Sydelle, Merlin's Speech-Language helper from the Deaf Children's Society.
In the weeks before today, Gilly and Rob had been trying to get Merlin accustomed to wearing his CI (Cochlear Implant) gear, especially the bit that goes around his ear. Merlin tolerated it for about 20 seconds! And since he removes it by throwing it on the ground (not a good idea with a $4000 item), they had been working with the simulated one that goes on his Teddy bear provided with his CI gear. So the process began with 'fitting' and working out a good arrangement for the magnetic head piece, processor and controller. Merlin sitting in Rob's lap, Sydelle distracting him and Robert fitting pieces in place. Merlin quickly figured out that just by shaking his head he could 'throw off' the annoying bits. Ultimately, surgical tape was sought and the head piece and processor were taped on and that worked.
Here's some pictures. Linda H. took these. Using the camera flash wasn't possible but they give you an idea of what was going on. Click either picture for a larger page.
. . . . . . 
Merlin is nothing if not adaptable, and jumping forward two hours, by the time we left the hospital, Merlin was wearing his CI gear without tape and seemed to be fairly tolerant of having it in place. He wore it until we were settled into a restaurant for lunch and then 'removed' it. Time will tell how he habituates to this new piece of paraphernalia but we were all surprised at how quickly he came to accept its presence and it looks as if it won't be a long battle to get him to accept wearing it (one of the pluses from this day). I've just talked to Gilly and she said that after his big day, once he got home, he fell asleep while wearing his new equipment and after he woke up again, they put it on him and he's tolerating it well although he's a bit fussy about it.
OK, back to the room and the turn-on. After the 'fitting' was worked out, Merlin's CI was wired directly to a laptop computer and Robert began a series of tests of the 22 electrodes that stimulate nerves from different sections of the cochlea. In the operating room immediately after surgery he had run a test that showed that electrode 1 was not working and that one or two others might be questionable. They actually only need ten working electrodes (channels) to build a usable speech signal. Robert's tests today confirmed that electrode 1 was still not producing a response and another might be questionable but the others all showed as working. Electrode 1 might start working in the next month but generally, if the electrodes ARE working they don't then stop working, so 20 of 22 is a very respectable result from the surgical part of the business.
The first stage involved slowly and sequentially testing each of the 22 electrodes at different levels of electrical stimulation until they can see the nerve to the brain 'fire'. The goal being to determine the minimal level of stimulation required so that nerves are not damaged when the electrodes are triggered by the external processor.
Then Robert began stimulating electrodes at different levels and watching for a visible response from Merlin, which was difficult because Merlin was deliberately being 'amused' by Gilly, Rob and Sydelle to keep him from removing the equipment. Merlin responded with quick looks to the side of the stimulation every now and then, and then growing quite 'introspective' as if he were just 'tuning in' to this new form of stimulation of a part of his brain and finally just expressing two-year-old exasperation at having his hand movements limited and being kept in one place.
Finally, Robert set up a program or series of programs (MAPs), based upon these measurements, uploaded them to the CI processor, unhooked the laptop connection and let the microphones in the processor take over, set to very low volume levels. ie: Merlin was only getting electrodes firing from very nearby sounds. It wasn't possible to be sure if at any point, Merlin actually cocked his head to the side and indicated "what was that?" but we all took a turn to talk to him and what then followed were instructions for how Gilly and Rob were to work with Merlin over the next few weeks before his next visit to see Robert. At one point, with the CI working we started clapping and Merlin got right into that, joining us in grinning and clapping away in time. But who knows whether that was just Merlin enjoying a circle of attentive adults being silly or whether he was enjoying a synchronised sound-visual event? Basically over the next weeks, Gilly and Rob need to try to move him through four, increasingly more responsive programs on the processor all the while monitoring his responses. Starting at the lowest level of dynamic range response and working their way up through the four programs as Merlin shows that he can tolerate them, at the same time getting him adjusted to wearing the apparatus. At subsequent sessions, Robert will create programs for the electrode array that respond to a wider dynamic range and then Merlin will adjust to 'hearing' them. Robert did tell us that they've had good results with all of the CIs implanted in their auditory neuropathy patients.
All in all, Robert seemed quite pleased with Merlin's first visit. Robert's the one with the experience so if Robert is happy, we are happy and as noted above, the initial 'just getting Merlin to wear the gear' problem may not be all that great despite our early concerns. (Gilly did take some surgical tape home with her though). The whole session took about two and a half hours and we finished with a nice all-together lunch in a restaurant that Rob H. picked that turned out to be a good choice.
Sydelle made a movie of a lot of the visit although Rob figures that a lot of it will be the back of Rob's head as he held Merlin. If any part of the movie proves interesting, I'll put it here.
Although the event wasn't a 'breakthrough' (and we didn't expect that), it was another marker along Merlin's incredible journey and we were glad to have been able to be part of it.
Thanks for your support throughout.
Grandpa Kit
Merlin doing fine (August 27, 2007)
Yesterday Merlin came to our house for most of the day. He's really signing a lot now and his walking is improving. He still wants a helping hand but he's planting his feet more carefully. I think it will still be several more months before he takes steps on his own but the progress is noticeable.
I took advantage of his visit to take a couple of not very flattering photos of his operation and Gilly brought over his CI 'gear' for us to examine. Click this link to access these photos.
He's really doing well and isn't favouring the operation site at all. We tried his external CI (earpiece) on him but he immediately removes it. Interesting because he keeps his hearing aid in quite readily. At this point, it does nothing though so it's understandable that he'd just take it off.
His shy smile and "That's a good one" look at you when you do something he knows is silly is one of his more endearing features. We had a great day and visited with Joanne and Derek and Rob (and Tuki).
Grandpa Kit
Cochlear Implant Operation follow up (August 17, 2007)
Merlin is doing very well after his CI. He is not favouring the actual operation area behind his right ear and even sleeps on that side. He doesn't seem to be in much pain and is more or less his usual self although he's been enjoying all of the extra attention. Gilly hasn't had to give him very many of the pain-killers that she was issued with. He's been checked out a couple of times post-operation. On the first day home, he did seem to have an allergic reaction to something, possibly the iodine solution used in the hospital but that is now pretty much cleared up. Swelling of his right ear is going down and it almost matches the unaffected ear. There's a picture here of a rather angry looking scar if you really want to see it. Yesterday he had an extensive session with the team and they pronounced him as 'doing very well'. A big box of the external parts of his CI has arrived and Gilly has gone through it all. She says that it's "much more complicated" than his hearing aids.
His official 'turn on' date will be September 6th and for this, Merlin's new friend, technician Robert has booked the board room at BC Childrens' to accommodate the various grandparents and other interested parties on the big day and it will also be videotaped for those who can't make it in person. Of course many more visits will be required to get Merlin 'habilitated' to his implant but this first moment is one that all of us want to be there for. More on or after September 6th.
Grandpa Kit
Operation completed (August 10, 2007)
It was a long day at BC Children's Hospital. Merlin went into his cochlear implant surgery at about 11:45 this morning (his Dad was with him until the anaesthesia was administered).
It was 4:00 PM before the surgeon came out to tell us that the surgery was complete and had gone well. They do a post-surgery test to see if the implant "works" before bandaging him and sending him up to the recovery rooms. He woke up after about an hour and Merlin and Gilly will spend the night in the hospital and they come home tomorrow morning after another check up by the surgeons. Gilly called to say that he was recovering well, had ripped his "turban" off and has had something to eat.
So we seem to be past this hurdle. Next will be the first activation of the implant in about three weeks.
Thanks for your messages of support and prayers
Kit and Jane (and Merlin, Gilly and Rob)
Merlin's Ears (May 23, 2007)
Merlin has a date for his Cochlear Implant (a bionic ear) surgery on August 1st (or sooner, if there is an opening). The surgery takes a few hours and he will be in the hospital overnight. He'll have a big bandage on his head for a bit. Then 6-8 weeks after the surgery, we'll go in to get the implant "turned on".
The turn on is a gradual process. There are about 22 electrodes, and essentially the volume for each one will be adjusted to be comfortable, and over time increased to give him the most benefit. This process is called MAPing and is much more detailed than what I have just written.
For more info on CI's, go to: http://clerccenter.gallaudet.edu/KidsWorldDeafNet/e-docs/CI/index.html
For the latest photos, go to: http://picasaweb.google.com/gillythegreat/May2007
or: Merlin Photos
(yes, the kid has 2 websites)
cheers,
gd
Click here for a recent movie.... Gilly caught Merlin climbing the ladder on his bunk bed...