Our Two Year Old Child Aiden's Cochlear Implant Journey

Another Skyrocket Day

2007-07-23T19:20:00.001-04:00

Ric and I took Aiden to his AV Therapy session today all by ourselves - I don't think that has happened yet! My Mom (who sometimes comes with me) is on vacation, and Noah (who is usally there too) is in summer camp this week. What a big difference in our session - our full and undivided attention was on Aiden and his therapist (which, I guess, is how it should always be - but life just gets in the way sometimes....). And, I don't know if it was because of that or because Aiden is just making such great progress, but he had a FANTASTIC session. Maybe his best yet.

As soon as Aiden's therapist laid out an object, Aiden named it off (or at least its sound) before she could even prompt him. And, when asked to pick an amimal out of a line of about 7 animal cards - he did it every time without hesitation! Not only that, but he was just chatting away to himself (in his own language for now) like crazy. One time during our session, a couple of other people walked through the hallway (behind a closed door behind us) who were talking. Aiden stopped what he was doing, turned around, and pointed to his ear. Wow! I barely hear their voices :>

Other than that, Aiden had a really super day. This was Noah's first day at camp, and I thought that Aiden was going to be really missing him. We kept him pretty busy during the day, so he wasn't bored, but he did walk around the house calling, "moah, moah" a couple of times. I have been taking the kids to a playgroup at the gym that is around the corner from my parent's house (Do those of you who don't live in Canada have this? In our big superstore grocery stores, there is a gym upstairs with weights, classes, cardio equipment, etc. AND a daycare. I think it's one of the best things every invented! Not only does Mommy get some time alone, and some excercise, but the kids get to spend an hour playing with some friends, playing games, and doing "kid friendly" excercises.). Anyway, Aiden ususally goes with Noah and Noah takes care of him while they are there (gets his snack, drink, etc). I didn't know this morning how Aiden was going to fare without his big brother, but I shouldn't have worred - he did great :>

Sometimes a "buh" is just a "bus"

2007-07-21T20:13:00.000-04:00

I have to admit, there's one thing I don't totally get about Aiden's AV Therapy. Shortly after "switch on" we spent a TON of time teaching Aiden to say the sounds that are associated with certain items, and not the names associated with them (ie: meow for cat, ee ee ee for monkey, buh buh buh for bus, moo for cow - you get the picture). I realize that he needed to learn how to make all of these sounds to learn the sounds of speech. But, once he got all of those sounds down pat we are trying to get him to CHANGE and now say the real words. It's like, "Okay, you're very smart - great work learning all those sounds. Now, that's not what I want to hear anymore - say this instead." I'm sure it's frusterating for the little guy. It's frusterating for us too. No matter how many hundreds of times I say "cat" when he sees a cat, Aiden still says "meow" every time.

However, we did have a little breakthrough of sorts the other day. There is a school bus yard just down the street from our house. So, everytime we drive by the yard we hear, "buh, buh buh". In turn we say, "Good Aiden, that's a busssssssssssss". Well, we were all driving in the car out to Ric's Mom's house for dinner, and when we were driving by the bus yard, Aiden said, "bus" clear as day! I think we almost drove off the road :> Even Noah was cheering and clapping with us. Now, the cutest thing happens - Aiden still says a clear "bus" most of the time for all busses, and gives himself a little round of applause each time :> :>

Look Who's Talking Now

2007-07-21T19:53:00.000-04:00

Some days, it seem like Aiden's progress happens tiny bit by tiny bit. A new word one week, a better vowel sound another week, etc. And sometimes, when you are really paying attention, Aiden's progress seems to skyrocket out of "nowhere".

Last Wednesday was one of those skyrocket days. We were in Belleville for a couple of days and Aiden was up at his usual 6:20 am (that changes when they get older, right?). I went in to get him and there he was, cute as always, jumping up and down in his crib with a big smile. He waved and said, "hi!!" in a big excited voice, handed me his soother and said, "soosie", then "up, up, up". We grabbed a diaper and headed into Noah's where we've been changing Aiden since the change table moved to Ottawa. Noah has a solar system mobile on his ceiling that Aiden likes to watch, so we turned it on and he said, "round and round". When we were finished we turned off the mobile, to which Aiden said, "All done. Bye bye." Going down the stairs it was, "down, down, down". When we got downstairs Aiden greeted Noah with a big, "Moah!!!"

It took me a minute after this exchange had happened to realize - hey! - Aiden just had a little conversation with me (okay, TO me) - USING WORDS!!! The funny thing was that his implant wasn't even on until we came downstairs and saw Noah.

Like I said, some days it seems like the progress is slow. And then there are days when you realize that Aiden's really GETTING IT, and this words are really coming together to help him communicate with us. I just can't wait to see what we'll be saying about him in 6 months time.

Progress!

2007-07-06T15:58:00.000-04:00

Happy summer everybody! As you can see above, Aiden is having no shortage of fun this summer :> And, he is progressing like crazy with his listening and speaking. We had him back at the Audiologist a couple of weeks ago for his 6 month "mapping", and that went really well. I think that Aiden is hearing more sounds - even very quiet things. In the sound booth he heard sounds as low as 25 decibels, which is amazing. What it means is that he hears everything that a person with good hearing would hear.

And, Aiden's vocabulary is improving and expanding every day. He says new words all the time, and is now starting to say a couple of 2 syllable words like ice cream and all done. He even says his own name almost perfectly! (But, if you can believe it, still not Mom or Dad!!!!).

Actually, his new found ability to communicate is both good and bad... It's good, because for the first time he can actually ASK for what he wants (by saying juice, shoes, cheese, up, more, etc.) - which is great. But, it's kind of getting in the way of his therapy sessions. Up until now, Aiden has happily gone along with his therapy and pretty much did whatever anyone asked him to do. Yesterday, I was doing a little session with him and I said, "okay, now give the ball to the girl." (note: he has to pick the ball out of a number of objects, and hand it to the girl doll as opposed to the boy doll). He looks right at me and says, "No!" What do you mean "no" ????!!!! We played for a couple more minutes, and he says, "all done. up. up. up." Okay.... I guess we're done. I guess I should be excited that he is acting just like any other two year old would :>

One cute story to add. Aiden had a follow up appointment today with his Pediatric Surgeon in Kingston. While we were in the waiting room, Ric and I were playing a little board game with Aiden, Noah and another little girl on one of the tables. The waiting room was packed with people, and when Aiden got bored of the game I went and sat beside another woman on the chairs. We got to talking and she was asking all about Aiden. One of her questions was whether he had any lasting consequences of being just one pound at birth. I said, "well, he lost his hearing in both ears." She looked at me very strangely and said, "but he can understand what you are saying to him" I explained to her about Aiden's Implant, but inside I was thinking, "Seriously! You really think so? The fact that he can hear is evident even to someone who he doesn't know his story, watching him for just 5 minutes? Yeah!!!!!!" Yes, Nicole, Aiden can hear :> :>

Mom? Dad?

2007-05-08T13:56:00.000-04:00

One would think that it would be easy to tell if your child can say "Mom" and "Dad" or not. Well, in our case, you'd be wrong! In just the last couple of days, we think Aiden is saying Mom and Dad.... but we're not sure.

Sometimes, when Aiden wants me to pick him up (he can say "up" perfectly), he says "um um" instead of "up up" - which certainly sounds like it could be Mom. Once he said "Mom" SO clearly that Ric and I both turned right around and said, "that was sure clear"! But, he hasn't repeated it.

"Dad" is the same way. He says "da da da", and once said "daddy" very clearly, but not consistently.

Anyway, I guess it's coming!!

Noah is a different story. Aiden has definately mastered saying "Noah". Okay, so it comes out as "oh ah" - but he certainly means Noah. He calls for him when he isn't in the room, or he can't see him. Cute :>

So Cool!

2007-05-08T13:46:00.000-04:00

This is SO cool - we recently started tracking visits to Aiden's Blog with a new program (well, new to us anyway) called Google Analytics. We can access the program online (www.google.com/analytics) and it keeps a record of how many people visit our Blog every day, whether they are new or returning visitors and where they are from (actually, only where their ISP's are located - but close enough for the entertainment value!!).

I had no idea what kind of resutls we were going to get, but I have been totally amazed!! I have only been tracking the site for 2 weeks, and already we have had visitors from Melbourne, Madrid, Berlin, Olney (in Buckinghamshire, England), Israel, Seoul, all across Canada, and all across the US (the furthest points being Baton Rouge and Carlsbad). So exciting!! Oddly enough, I have found it very interesting that our LEAST amount of visitors are in Canada.

I wonder what all of you from different parts of the world think of Aiden's Blog. Do you have a hearing loss? Do your children? Is there a Cochlear Implant in your life? Are your daily activites, struggles and hopes much different from our own? Imagine if we could set up a network of friends and visit each other when we are travelling around? :> Very cool.

Whoever you all are, I hope you keep coming back to Aiden's Blog. You have certainly given me a bit of extra incentive to keep my posts current. And, if you have a minute, please leave a comment!

Where's Aiden's Implant?

2007-04-25T20:16:00.000-04:00

You may have wondered where Aiden's Implant is in the pictures that we just posted (see next posting below). It's there - it just looks different than you are used to (unless you have seen Aiden lately). About 2 months ago, we got a bit of a hardware "upgrade" for Aiden's implant. You may remember that we were having no end of troubles keeping the behind the ear mic on Aiden's ear. So, we switched him to a device called a "behind the ear processor" or BTE. There is still a magnet on his head. That cord is attached to the BTE. The BTE is supposed to be worn behind the ear (hence the name) like a hearing aid. But, Aiden's ears are not close enough to his head, nor strong enough to hold it. So, we have it safety pinned to his sholder for the time being - as you can see in the above picture with Auntie Sharon.

When you see a picture of him face on, you don't even realize that it's there - especially if the BTE has been pinned a bit back on his sholder. So, now instead of having a blinking light on his ear, there is a blinking light on his sholder....

This, of course, is not a permanent solution. We make jokes about Aiden having this extremely high tech piece of equipment, valued in the neighbourhood of $10,000 (just for the hardware), and we have it safety pinned to his shirt....

There had been some talk of Aiden meeting with a plastic surgeon to see about firming up his little ear, and tucking it in closer to his head to accommodate the processor, but I think he needs to be a bit older first. I really NEVER thought I would be talking about taking my 2 year old to the plastic surgeon!!! Of course, I never imagined I would be doing a lot of things that I find myself doing :>

Pictures!

2007-04-25T20:06:00.000-04:00

Here are some great new pictures for you all to enjoy!
The first is actually the first really great picture we have of Noah & Aiden together - taken on Easter Sunday.
The second is our little Lepricon on St. Patrick's Day.
The third is Aiden & I at the Batawa Easter Egg Hunt one week before Easter.
The fourth is Aiden at the same Batawa hunt collecting his eggs.
The last one I think is particularly funny. This was taken at The Rainforest Cafe in Yorkdale in Toronto about a month ago. They have "thunderstorms" in the restaurant, which are actually pretty loud. Noah didn't like them, and put his fingers in his ears whenever they started. Aiden followed suit... I wonder if that helped?? :>

We're Back!

2007-04-15T18:50:00.000-04:00

Wow. Was it really JANUARY 19th when I published my last posting?! I knew it had been awhile, but I was truly suprised that it had been THAT long. I don't know where the time goes, what with me just sitting around at home bored all the time....

Actually, as you might have guessed, nothing could be further from the truth. In fact, there is so much going on with Aiden (and the rest of us) that I hardly know where to begin.

Aiden is saying so much! In 5 days, it will be 5 months since he was "turned on", and his progress has been remarkable. Here's a sample of what he is saying (all on his own, without prompting from us):

- Uh-oh (when he or someone else drops something)
- Bye-bye (when anyone is leaving. Also, when he hear's "bye bye" he will turn around and wave
- Meow (when he sees a cat - even on TV or in a store)
- Bow Wow (when he sees a dog)
- Brruuum (for a car)
- Aaaaahhhh - with a cute up and down finger gesture (for an airplane)
- Puh puh puh (for a boat)
- Baa baa (for a sheep)
- Hello (when he is playing with the phone, holding it to his ear - which is actually pretty funny given that he can't hear out of his ears :> Kind of sounds like "oh oh")
- Hi (as a greeting)
- Moo (for a cow)
- More (when he wants anything - a very long and drawn out version of the word more. He first said this word to tell us that he wanted more chocolate Easter eggs...)
- Baby (VERY clear!)
- Ball (pretty close anyway)
- Bounce bounce bounce (in association with ball - kind of like "bou bou bou")
- Hop hop hop (for a frog or bunny - a bit like "ha ha ha" - whispered)
- No (when we're playing a game with his sippy cup and he's telling me he doesn't want anymore. Kind of like "oh")
- Mmmmm (for food or eating - or anything that tastes good)
- Yeah! or Horray! (when he does something he's proud of)
- Hoo Hoo & owl (for an owl)
- Eee Eee Eee (for a monkey)
- Ssss (for a sleeping baby)
- Hot (for hot coffee, etc. - not exactly clearly that word but close and consistent - like "ha")

I could probably go on - but I think you get the point! Literally, I think he says something new - or says something he has already said a little bit more clearly - every day. And, given that his therapist says that what they look for is for a child to have mastered 10 words in 1 year, we think that he is a fantastic, brilliant little star. I think I was up to 22 words on the above list at less than 5 months....

Here's a sample of some of his reactions to sound:
- Whenever we are in a store and he hears an announcement, he always gets my attention and points to his ear.
- Actually, any new sound that he hears that he can't identify or see the source of, he points to his ear and looks as us as if to say, "I heard that - what is it?"
- My Mom & Dad's coffee machine makes a very distinct noise when it is finished brewing coffee (a bubbly gurgly sound), and Aiden now knows exactly what that sound means. When he hears it, he walks right over to the coffee machine, points up at it and then points to his ear.

Here are some things that Aiden has just started doing:
- Saying "a-ta" when he wants something or when he is giving you something (I say that to him when I want him to give me something)
- The "ssss" sound. To me, this is just a HUGE milestone. This is a sound that he DEFINATELY did not make pre-implant - not even remotely close. And, before he ever made this sound (about 2 months ago) I remarked to his therapist that when he did make the "ssss" sound I would know that we had really accomplished something. Aiden first made this sound for Ric when we were waiting at Hotel Dieu for Aiden's 8th (that's right, 8th) surgery that was subsequently canceled (long story). Way to go Ric!
- I think that he tried to call Noah - although it comes out as "ooh oohh"
- Aiden clearly understands more words than he can say. I told him we had to find his jacket the other day (like in plain, not accented language - I was really pretty much talking outloud to my self, and he went and go it! I almost fell over :>

So, what's next? Everything that Aiden is doing is so exciting, it seems a bit funny to be wondering what's next, but here's what we're looking out for:
- Aiden is doing so well with associating sounds with things (like meow for a cat), that now we are working on him saying the actual names of things. I think he will say cat or car next.
- Okay, so what did I count above, 22 words that he says? Well, two of them are NOT "mommy" or "daddy" or even anything close. That better come soon little one. Remember who the people are that feed you chocolate easter eggs....

What Is That Blinking Light On His Head?

2007-01-19T20:09:00.000-05:00

This is actually a question that we got asked at Costco last week :>

As most of you know, there is a little red blinking light on Aiden's ear level microphone that lets us know that the implant is indeed picking up sound - and apparently makes other people very curious! When people have asked about Aiden's implant, I think I have told every person a different story. I have never known quite what to say before (Do I just call it a fancy hearing aid? Do I go into a lot of detail? Am I talking over or under people's heads?) - but I think I've figured it out! Here's what I'm going to tell anyone else who asks me, "what's that blinking light on his head?" (or words to that effect...)

"It's called a Cochlear Implant. It is like a hearing aid. But, whereas a hearing aid is an entirely external thing, part of this device is actually implanted in his head. Plus, a hearing aid's job is just to amplify sound. A Cochlear Implant goes much further - it actually picks sound up with a microphone (the blinking light part), translates that sound into electrical impulses (using this processor on his back), and sends that information to his brain (through this magnet on his head) which then interpret those impulses and understands them as sounds. It's really pretty amazing."

I hope that helps those of you who have wrote me and said that you also didn't know what to tell people.

Or, you could just follow what Aiden's 3.5 year old brother Noah tells people. Last time we were at Aiden's Pediatrican's office (Hi Dr. Dempsey!!), Noah and Aiden were playing in a little house that it is the waiting room with another girl who was probably 9 years old. She asked Noah what was on Aiden's head. I was just about to jump in and offer an explanation when Noah (as confidently as anything) said simply, "It's a Cochlear Implant, it helps him hear." Seriously!!!!! I didn't even know he KNEW the words Cochlear Implant - let alone be able to use them in a sentance that answered the little girl's question perfectly. I guess I could learn a thing or two from him...

Aiden's Second Mapping

2007-01-19T19:51:00.000-05:00

Aiden had his second "mapping" at CHEO on Monday.

The mapping process is actually pretty cool. Aiden's Audiologist unhooks his implant from Aiden's Speech Processor (the part he wears on his back) and hooks it up instead to a laptop. The laptop is equiped with software that can read and change the settings on Aiden's Implant (much like you would change the settings on the graphic equalizer of a stereo). For Aiden's new Map, the Audiologist wanted to change some of the settings, which would increase Aiden's ability to perceive softer sounds (even as soft as a finger tapping lightly on a table). When the settings were first changed, the Audiologist made a "ssss" sound, and Aiden got very upset and cried like he was hurt - much like he did at the time of initial turn on. So, we gave him a break, and tried again with a less drastic change (even thought the first change was pretty small). Aiden adjusted pretty quickly to the new setting, so that Map was saved - and now this is what we use on Aiden's Implant every day.

Aiden's Audiologist has the ability to program 4 Maps into Aiden's Implant. This part is really cool. Aiden's "Map 1" is the new Map that was programmed on Monday that we are to use everyday. Aiden's "Map 2" is a setting that we change change the implant to if Aiden is in a noisy environment. For example, if we took him to a hockey game, we would take his speech processor, click a button, and reset his map to "P2." On this setting, Aiden would be able to hear less of the background noises at the game and be able to focus more on sounds closer to him (like us talking). In noisy enviroments, this is would be a much more comfortable Map for Aiden. Aiden's "Map 3" is a called the "Whisper Map". So, if we are in a very quiet place (like a library - or at home doing his therapy sessions) we change change to P3 and Aiden will be able to perceive quieter sounds with more clarity - and from a greater distance. Aiden's "Map 4" is simply the original Map we had before the changes were made on Monday.

After the Mapping session, Aiden got to have a little time in the sound booth - and he did amazingly well! He clearly picked up sounds at just 25db (which even I had trouble hearing!).

We had a really great visit all the way around this week in Ottawa. On Thursday, Noah, Aiden & I were invited to a playgroup that another Mom with a boy in AV Therapy at CHEO hosted. We had a really great time - it was so nice to meet her and the other Moms that had children with a hearing loss. All of the kids at the group have hearing aids now, and some are hoping to get Cochlear Implants soon. So, they were very interested in Aiden's experiences. I think it is so important to have this kind of support from people that are going through a similar experience as we are - not to mention that it's just nice to have new friends! :>

Happy Second Birthday Aiden!!

2007-01-11T20:09:00.000-05:00

We had a fabulous birthday party for Aiden yesterday (not quite the extravaganza that it was last year - but fun nonetheless!). And, he could actually HEAR us sing Happy Birthday to him :> Now that's a cool birthday present. Aiden's Grandma and Grandpa traveled for more than 4 hours back and forth from Ottawa just to have dinner with us, and Aiden's Nanny joined us as well. We cooked Aiden's favourite dinner (ham, Tater Tots and asparagus), and Daddy made one of his famous birthday cakes in the shape of a train. Poor little Aiden has a bit of a cold, so there aren't many smiles from him in the pictures :<

I actually can't beleive that it's been as long as it has since I made my last posting. My apologies to those of you who check here often hoping to hear news of our little man (Hi Shirley!!). Aiden continues to do amazingly well with his implant. As you can see from the last picture in the series above (with Nanny and Noah) we are still having the same frusterations as always with keeping his behind the ear microphone actually behind his ear. So, it dangles around by his neck like this picture shows most of the time. At first that really bothered me - but now I guess we're getting used to it. We have ordered a longer wire from Cochlear through CHEO, so our next step is to try having him wear the microphone on his sholder, as many other people have suggested. I'll keep you posted on how that goes!

In terms of his actual hearing and speaking - he is really making amazing strides. The way that things usually progress with a child after implant activation is that the first 4 months or so are spent really just listening and taking in all the new auditory information. After 4 months they start to imitate some new sounds. Think of it this way: a newborn baby hears about 3 months in utero - and 6 months or so in the world before they start making intelligable sounds. Well, Aiden (in his typical fashion!) is just 6 weeks post activation - and is already making an amazing amount of new sounds.

For some time now, he has imiated the airplane (ahh, ahh, ahh) sound. But now he REALLY clearly says "meow" for a cat and "bye" when someone leaves and he's waving. He also says, "ma ma ma" (but I don't think he actually means "mom" yet). He also is very good at imitating sound patterns. Plus, his therapist and I think he makes a train sound ("ooh ooh ooh") and a monkey sound ("ee ee ee"). Pretty impressive I think! Also, I think that Aiden really LIKES wearing his implant. Whenever it is off (bath time, bed time, in the car) he points to his ear like he is missing something. Also, when the magnet falls off - he comes and finds me. Plus, when he sees the implant when it is off, he will always bring it to me and hand it over like he's saying, "come on mom, let's get this thing on!"

Also, as an aside, now that he can hear, Aiden's sign language skills seem to have improved! He clearly does the sign for cat, milk and sleep. Very cute :> I'm trying to get him to sign "all done" for when he's finished his meal instead of throwing it on the floor...

Other than that, we couldn't be happier with his progress!!! I can't even imagine what kind of a posting we might be making a year from now on his third birthday!!!

Is That a Car Sound I Hear?

2006-12-09T19:47:00.000-05:00

Very exciting - both Ric and I thought that Aiden is making the "car" sound ("brrrruuuum") when he is playing with toy cars today. Also - Aiden is definately doing the "airplane" sound ("aaahhh aaaahhhh"), plus several other "hard" sounds like "ba ba ba" and "da da" (although not in relation to anything in particular).

I mentioned earlier in the week that Aiden's Audiologist gave us some wig tape on Monday to try. We have used it on a couple of occasions, and it seems to work - but only for a limited amount of time. One perfect example was in the grocery store the other day. I used the tape to secure his ear mic behind his ear and it stayed on for the entire trip. This was a HUGE improvement from last time when it came off every two seconds. The tape seems to hold until Aiden decides that he is going to pull the mic off. Then, even just one removal seems to weaken the "stick" of the tape. However, it works for awhile which is better than nothing! We have run out of our sample, so I will have to visit a little wig store in Belleville and re-stock.

I should mention that most of the times we have had Aiden out this week, lots of people have commented on or asked about his implant. EVERYONE takes an extra long look at him, but more people are actually saying something now. One lady in the grocery store commented to her friend, "oh, that baby (yes - she meant my 2 year old!!) has a hearing aid." Again when we were at the checkout another lady asked about Aiden's implant and said she thinks she has seen him at the store before. This lady was interesting, she told me that her husband had to go to an Ottawa hospital A LOT too - every six months!!! I didn't have the heart to tell her that we go every week. To her, twice a year was a real challenge :>

Then again, when we were out for lunch at Cora's, a couple at the next table asked lots of questions about Aiden's implant. I keep thinking that I should make little cards or something with a picture of the internal and external device and a little description of the implant to hand out. I think it's nice when people are genuinely interested - and I feel like I should at least try to give them good answers to their questions.

Great Weekend!!

2006-12-04T18:58:00.000-05:00

We had some really fantastic "winter" fun back in Ottawa this past weekend. Spencerville, a country town near Ottawa, had a Winter Festival on all weekend. We all (me, Noah, Aiden, Grandma & Grandpa) packed up and headed out there first thing on Saturday morning to enjoy the "Santa Breakfast" at the local Legion. Aiden ate a HUGE helping of pancakes, toast, sausage and scrambled eggs. Then the kids got to have their pictures taken with Santa. Noah told Santa that he wanted a John Deere, and construction trucks ... Aiden, however, was a little suspect of Santa :>

After breafast we participated in lots of other great Festival events: decorating Gingerbread Men, horse drawn sleigh ride, kid's crafts, Barbershop Quartet, and hot apple cider over a fire outside the town's Mill. We really had a great day. Again we are all amazed that Aiden wears his implant up at full volume around all of this hustle and bustle - and it doesn't seem to phase him a bit!

Back at home, we met up with "Auntie Sharon" (my sister). We then got the chance to all sit around the table and have a little Therapy session with Aiden. He did GREAT! And, again, he CLEARLY showed that he heard all of the "sounds of the speech spectum" and all of the "learning to listen sounds" that we made as well.

Then, to top off that great weekend - Ric came to Ottawa this morning so we could both accompany Aiden to his AV Therapy (Audio-Verbal) at CHEO. And, what a little superstar our boy is!!!!! In the sound booth, Aiden showed very distinct reactions to sounds at just 30 db (like a whisper). Then, during his AV Therapy, he actually COPIED the sounds of a cow (okay, so it was an "oooo" - but pretty close!!), a monkey ("ee ee ee") and a sheep!! Aiden's therapist was SO amazed by him - and so was his Audiologist. (We also received some wig tape for Aiden at this appointment - and it actually seemed to be working, until Aiden got really tired at home and just kept pulling it off!) They just can't get over the progress that he is making (especially considering that his implant was activated just 2 weeks ago today). Way to go Aiden! I think that next week I will take some pictures of Aiden from the NICU to show them. I know that, although they think he is amazing now, when they see his start in life they will really understand he is nothing short of a miracle. We sure do anyway :> :>

Back at Home for a Couple Days

2006-12-04T18:49:00.000-05:00

The boys and I had a great couple of days "back at home". They sure enjoyed playing with their Dad (the picture of them laughing was taken when they were bouncing up and down on his chest :>). You can see a bit of our frustration in action in this picture as Aiden's behind the ear mic is dangling down around his back because he is bouncing around. I also took Noah and Aiden to see the Christmas Train at the mall (the second picture). The train really captured both of their interest - and we made lots of "train" noises for Aiden's benefit! We're still keeping up everyday with Aiden's "learning to listen" sounds therapy - and he really does seem to respond to all of the sounds that we make.

Great Quotes

2006-11-27T21:43:00.000-05:00

I have been meaning to do this for awhile, and I haven't really had a minute until now. Over the past few months, I have read so many great quotes that have really resonated with me. I want to try and remember them all, so I think this Blog is as good a place as any to list them. If readers have any that they would like to add, just put them in a comment and I'll add to the list! As for my own list, I will keep adding to it myself.

"The longer I live, the more I realize the impact of attitude on my life. Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company ... a church ... a home. The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past ... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the string we have, and that is our attitude ... I am convinced that life is ten percent what happens to me and ninety percent how I react to it. And so it is with you ... we are in charge of our attitudes." Charles Swindoll

"What I've learned in good times I can fit on the head of a pin" C.S. Lewis

"Spread love everywhere you go: first of all in your own house. Give love to your children, to your wife or husband, to a next door neighbour ... Let no one ever come to you without leaving better and happier. Be the living expression of Bod's kindness; kindness in your face, kindness in your eyes, kindness in your smile, kindness in your warm greeting" Mother Teresa

On Flossing (:>): "If you are pressed for time, here's a tip for you: only floss those teeth that you would like to keep" Dr. Oz

November 24 - Four Days Post Switch On

2006-11-24T13:55:00.000-05:00

Well, they said it would happen - and it did! This morning when we put Aiden's implant on, there was no crying! In fact, he did so well that I thought we should try changing his settings to Map 3 instead of waiting for the weekend. So we did, and again he did great!! I almost went to Map 4, but I decided not to push my luck. Maybe tomorrow :>

Great responses to sound today. We notice him responding the most when he is in his booster seat at the table. I wait for him to look away or down and then either clap or make one of his "learning to listen" sounds - and right away he looks up! Of course we clap and cheer and get all excited. He seems to think this is a fun game.

One of his "learning to listen" sounds is of an airplane (ahhh, ahhh, ahhh - not your typical airplane sound, but the one we are supposed to do with this therapy). Today, after I did the sound, I handed the airplane to Aiden and he flew it around and made the ahh, ahhh, ahhh sound!!! Coincidence? Maybe, but I gave him lots of encouragement none the less.

Noah again is great with him today. He wants to do listening sounds with Aiden as well, and has invented a few of his own. Who knew that "dig, dig, dig" was the listening sound that a bulldozer made? :>

The ear level microphone is staying on better today. Still not GREAT, but better. We are using the little "huggie" that holds it on and that seems to work a bit better. I'm still looking forward to Ric bringing the ear mold to try that trick out. He's planning to come either today or early tomorrow.

There is such amazing weather here in Ottawa today that it's hard to beleive we're into late November - and almost a month away from Christmas. I think it must be 10 degrees. This has allowed us to go to the park and out for walks, so that helps keep us busy. I'm missing the "break" that I got by going to work a bit today. At least it is fun to point out everything to Aiden and tell him the words for lots of objects. I'm sure that will keep me entertained for another couple days, weeks, years - whatever :> :>

Actually, when the kids wake up (yes, both sleeping at once!!!) I think we will head to Starbucks (thank your for that break Cheryl!!!) for a drink and to Chapters to check out what books they have in stock that contain some "learing to listen" sounds for Aiden. Until tomorrow....

November 22 - Two Days Post Switch On

2006-11-24T07:58:00.000-05:00

10:00 am: Again, Aiden's Implant went of first thing this morning when he got up. In fact, this is going so well, I'm not even going to say that anymore - the implant goes on when he gets up and only comes off in the car and when he sleeps. Again, there was a bit of crying first thing, even on volume one of Map 1, but it didn't last more than a couple of seconds before we were able to distract him.

The rest of the morning was a bit frusterating. Keeping the ear level micorphone on is a real challenge. Every time Aiden moves his head a bit too fast - off it comes, and pulls the magnetic coil off with it. Plus, we don't seem to notice too many reactions to sounds. We know that, although he HEARS sounds now, he doesn't UNDERSTAND them, but I thought there would be more clear reactions.

9:00 pm: We had our first "post switch on" follow up appointment at CHEO at 2:15 today - and it went really, really well!!! Despite the fact that Aiden would rather make the "hallway circle" through the Audiology Department than sit down and have a therapy session, he did great!

It wasn't too long that we were there before both his Audiologist and AV Therapist agreed that the ear level microphone was as irritating as I thought it was earlier (glad to know I'm not the only one!!). The problem seems to be that the cartilage in Aiden's ear isn't finished forming - and so his ear isn't firm enough to hold the device. Secondly, there is still a lot of muscle compacting behind his ear from the surgery which is making his ear stick out more than it will eventually - and that makes it hard to hold the microphone as well.

They had a couple of ideas on how to fix the problem. The first was double sided wig tape. However, because the skin behind his ear is still thin from the surgery, we can't try this solution out yet. The second was to attach his hearing aid mold to the microphone - and us this to kind of "secure it" into his ear. Ric is coming to Ottawa on Friday, so I'll have him bring the mold and we'll try this out.

To be honest, I am starting to wonder whether the implant that DIDN'T have an ear level microphone might have been a better choice - but it's a bit late for that now :> We will make this work - I just haven't figured out how yet... When I talked to Ric today, he mentioned something about Duct Tape - so maybe we'll try that next!!! (typical boy :>)

Anyway, back to the appointment. Aiden's Audiologist switched his implant settings to Map 2 (I'll have to explain what this means another time - but it means the sound is louder at a VERY basic level). When the switch first took place, Aiden cried again and they had to turn the volume down. We distracted him for a bit and eventually got Aiden happy at Map 2 - Volume 9. After that, he had some really, really great responses to sound! He CLEARLY looked at people who were making sounds out of his visual field. This time there was no mistaking it!! He even turned around and looked at Noah when he was clapping, so Noah was pretty happy about that :>

His AV Therapist said that she was really happy with Aiden's responses today. We left with some homework assignments for therapy at home (including making lots of "airplane, sheep, firetruck, cow and kissing" sounds) and told that we could turn Aiden's Map settings up to Map 3 on the weekend.

After the appointment, we went to pick my Mom up at the airport on her way back from Winnipeg. This was a pretty busy and noisy environment, and Aiden didn't seem the least bit spooked or anxious about it - so this is a good thing I think!!

Until tomorrow...

November 21 - One Day Post Switch On

2006-11-21T18:52:00.000-05:00

Aiden had a really fantastic day for his first 'real' day of hearing! Last night he had a terrible night's sleep - I think he slept for about 20 minutes from 2:30 am until 6:00 am when he decided it was time to get up. So, I was a bit apprehensive about putting the Implant on him when he was tired and cranky - but we gave it a go anyway (okay, maybe I was a bit excited too! :>). It was only about 5 minutes after he was up that I put it on. And, even though the volume was turned way down, Aiden cried a bit when I first put the implant on. However, the crying didn't last, and I was able to distract him pretty quickly. And, after that he had NO trouble with it at all! In fact, he generally left it alone (which is AMAZING given the nightmare that keeping hearing aids on him was). In very short order, we had the volume his first "map" up to 9 (the highest volume of this level), and it didn't seem to bother him in the least.

We made lots of sounds all morning - in fact if anything we might have overdone it - we all wanted him to hear EVERYTHING (including Noah!), so it was a bit of a noisy environment. Now, there weren't very many occasions when I thought that Aiden was responding to sound - but it's still pretty early yet for that from what I understand. The most amazing thing that happened all day was that this morning the microphone fell off of Aiden's ear - and he PUT IT BACK ON HIMSELF!!!!! This is really nothing short of incredible!!!

The most annoying thing about this implant is that the ear level microphone (the piece that looks like a hearing aid) doesn't stay on very well. In fact, it seemed like everytime Aiden moved his head it fell off. We were able to put a "huggy" around it later in the morning and that helped a bit - but it's still a bit of a pain to have to keep putting it back on every time you turn around. I'm sure this will sort itself out in time though.

Noah was very, very good with today with Aiden. He really worked hard at trying to get him to hear different sounds. He kept saying, "can you hear that Aiden" or "Yeah, you can hear me (and pointing to his ear like we were taught to do)!" and even, "can you hear me now?" Aiden's Implant package came with a toy implant that is meant for a teddy bear - but it is now Noah's implant to play with. First thing this morning he actually wanted us to put tape on his head to hold it in place like Aiden's. So we did :>. Then, just before lunch, Noah held "Implant Clinics" (his words!!) in his bedroom. One by one he called Ric, Aiden and I into his room to see the doctor. We were tickled with a feather, brushed with a luggage tag, and then fitted with the toy implant. "Does that help you to hear?" he asked. Too cute :>

This afternoon we took Noah and Aiden to get some groceries at Loblaws. I think this was the best trip we had to Loblaws so far. It was so amazing to actually be able to TELL Aiden about everything that he was seeing. Loblaws had balloons everywhere today and Aiden was fascinated by them. I'm half surprised that he can't say ballon already for the number of times we said, "b..b..b...ballon!" to him!

People's reaction to Aiden was pretty interesting. No one said anything - but they sure gave him a second and third look. It must seem pretty strange to people that haven't seen an Implant before. I guess we better get used to it! It was kind of shades of the reactions we got when we had Aiden out in the stroller with his oxygen prongs and tank. At least Aiden was happy and laughing for most of the trip.

After the grocery store we took Noah and Aiden to see "Auntie" at a job site she was working on so that Noah could ride in the Excavator. He loved that :>

Aiden's Implant didn't work out so well in the car. If Aiden looked to his right, the magnet and microphone got knocked off really easily. I am hoping we can remedy that soon.

By the time we got home, Aiden was pretty tired. We were able to keep the implant on all though dinner (so it now has a bit of sweet and sour chicken sauce on it!). But, shorly after, he decided that he had had enough and took it off as soon as we could get it back on. So, we deduced that he was done for the day.

All in all, he had a fantastic first day. Although we didn't see much reaction to sound, we are thrilled that the crying seems to have stopped, that he wore the implant for almost the entire day and that he really didn't bother with it. Can't wait to see what tomorrow holds! We have an appointment at CHEO at 2:15 and I'll let you know how it goes...

November 20, 2006 - Switch On Day!!!!

2006-11-20T18:20:00.000-05:00

Big day for all of us today - Aiden's Implant was switched on!! So, the answer to the big question everyone has been asking us, "What do you think Aiden will do when they turn it on?" is....
Well... He cried. Yup, cried. Not just little tears - big, big heartfelt crying. Poor little guy. They have been telling us at CHEO for months that this was a possible reaction, but I REALLY never thought that would be his reaction. I was betting on no reaction, or smiling. Not crying!!! However, everyone there reassured us that this was totally normal. Aiden has never had the sensation of hearing before, and it is very foreign and probably pretty scary so I guess his crying isn't too surprising. As we were told, we brought lots of toys that he likes to keep him occupied and happy - so these came out right away. If you can beleive it, a Ziploc bag of Q-Tips (this is something he is ALWAYS into at home, and I don't normally let him play with them!) seemed to be the most popular. Followed by a new shape sorter game, chocolate covered raisins and a tape measure.
The Audiologist took things very slowly. When he turned the implant on, he started with it hooked up to a computer and playing soft to loud beeping sounds to test where Aiden's threshold of hearing is. Then, he did the "mapping" of the implant based on what Aiden can hear, and then hooked him up! But, everytime there was sound coming through to the Implant, Aiden cried. He was sad for a pretty long time, and then his AV Therapist suggested that we let him wander around. Well, as soon as he was on the move, he was happy again! He wandered around all over the place (with the implant on - hearing!!!) and really seemed to pay attention to the sounds around him. They put him in the sound booth for a test, and got really really good responses from him. So, it works!!!

We were at CHEO for about 2.5 hours. And, by the time we were ready to leave, Aiden had had ENOUGH. He was so tired. We got him home (to Grandma & Grandpa's) safe and sound and put the Implant on again when we got here. When the Implant was turned on here, he cried again - but this time seemed to settle down and get used to it pretty quickly. We have control over the volume, and we can turn it up or down if he is upset or not. The Implant got knocked off his head (or pulled off) a few times. When we have to put it back on again, Aiden cried a bit every time. So, that is going to take a bit of getting used to for him (and us). At CHEO, they said that the crying response should only last a couple of days, and then he will be more used to the stimulus.

Aiden is sound asleep in bed right now (early to bed for him tonight!), and we'll try again in the morning. But, what a huge day for us all!!! We are happy that this day is finally here, and we can't wait to talk to that boy in the morning :>

Note: The first picture here is of the Audiologist putting Aiden's implant on for the first time (not hooked up yet).
The second picture is of poor Aiden once the Implant was turned on.
The third picture is a pretty good view of the new Implant.
The fourth picture is of Aiden following a toy puppy that his AV Therapist was pulling downt he hall once he was a bit happier. You can see his Implant's "harness" in this picture (which holds the processor). I don't think we'll use this very often - it's pretty cumbersome, and the processor's pouch has a clip that works pretty well on Aiden's pants.

November 13, 2006 - 4 Weeks After Surgery

2006-11-15T10:54:00.000-05:00

We made another important decision for Aiden today - we picked and ordered the colour of his implant!! :> On Monday, Aiden will be given a blue "microphone" (the part that sits behind his ear and looks like a hearing aid), a silver "magnet" (the part that will sit on his head behind his ear), silver wires (to connect all the pieces together), a grey body worn processor (the only colour option there was) a black and blue processor holder and a black harness to wear the processor on his back.

We are SO excited about his turn on on Monday. I really can't wait to send my posting on Monday night to let you all know how it went.

Bath Time!

2006-11-10T14:28:00.000-05:00

Yeah, Aiden has been really depressed since his implant surgery. No smiling, no laughing - totally boring. HAH! Just kidding :> That couldn't be farther from the truth. As you can see, Aiden spends a good part of his day laughing his little head off. He thinks a bath with his Dad is especially funny (he's being squirted by a bath Penguin...).

The funny band on his head is on to hold an ear plug is Aiden's left ear because he still has a tube in that ear. The right tube was removed when the implant went in. Because you can't get water in your ears when you have an ear tube, bath time looks like this!

November 9, 2006 - 24 Days After Surgery

2006-11-10T14:18:00.000-05:00

I took what I think is a fantastic picture of Aiden today (if I do say so myself!!). I wanted to take a picture of Aiden to post, and show you that his bandages and Steri Strips are almost all off. Little by little, for about 2 weeks now, as the bandages have been peeling away we have just been taking a pair of scizzors and trimming them up. Today, as you can see, we're almost done (or he's almost done - I'm not sure which :>)! And, Aiden's incision scar looks like it is healing up really well.

After I had taken these pictures, I looked back at them on my camera and noticed a pretty cool thing. On the first picture shown here you can REALLY see the outline of Aiden's implant. I think that's so cool. I never really realized how big it is! As you can see in the second picture (which is just here for comparison sake) under normal circumstances you can't really see the implant at all. I don't know if it was just the lighting or shadows or camera flash that caught it on the first one. But, whatever, it's pretty amazing! Once his hair grows back, this view of the implant will probably never be available again.

Once the bandage is all off, I'll take another snapshot so you can see the incision. I still haven't seen the whole thing myself, but it seems to be pretty long.

Helpful Things

2006-11-10T14:17:00.000-05:00

Lots of people have asked us what they can do to help out during the time of Aiden's Implant surgery, turn-on, therapy, etc. We really, really appreciate those offers of help. And, this is where we're going to do something about them!! When Aiden was in the NICU, lots of people offered help, and we (in some part) were a bit to overwhelmed to even know what would be helpful.

I read an article, after Aiden was discharged, that I wish I had read earlier. This article said that, if people are offering to do thing for you, make a list available to them of things that would be helpful. That way, people can look at the list and pick something that they might like to contribute.

So, here's my list!! Okay, so it's just one thing right now - but I'll keep thinking and add to it :>

1. We do a lot of driving, whether it's back and forth between Ottawa and Belleville, or to and from CHEO and my parent's house. One of my "driving treats" is a Starbucks Coffee. Actually, lately it's a "tall, soy, no-whip mocha". Anyway, I have a Starbucks Gift Card that can be "loaded" by anyone online at any time. So, if you want to buy me a coffee for the road, just go to www.starbucks.com/card. They will tell you what to do. My card number is: 6028 3791 3850 2933. Thanks!

October 24, 2006 - 8 Days After Surgery

2006-10-25T15:21:00.000-04:00

I took this picture of Aiden this morning while he was wolfing down a breakfast of bananas, cherry bread and apple juice. Although you can't see it, his head bandage is still there. However, we got permission from the surgeon at the post-op on Monday to trim the bandage as it starts to peel away. So, it's a bit smaller today (but not much).

As you can see, Aiden's spirits are as good as ever. Nanny is babysitting today while Ric and I work and Noah is at daycare, so they should have a great day together!

So, can Aiden hear now?

2006-10-24T14:40:00.000-04:00

Lots of people ask me this question and others like, "when the implant is turned on, will Aiden be able to hear right away?" And, I think I have come up with a good way to answer these questions using the analogy of somone who has decided to get a home computer that they have never had before.

So, Steve's heard that "everyone else" has a home computer, and thinks that he should get one too. (Compare to: As his parent's, Ric and I think that Aiden should be able to hear.)

Steve does a bunch of research, and picks the model that he thinks will work best for him. (Compare to: We choose the Cochlear Freedom model of Cochlear Implant for Aiden.)

Steve purchases the computer, brings it home, and sets it up on his desk. (Compare to: Aiden went in for surgery on October 16th, and his implant was implanted. This is where we are right now.)

Steve's new computer is a big step for him, and he decides to wait awhile - like 5 weeks - before he feels comfortable plugging it in and turning it on. (Compare to: Aiden will wait until November 20th for his implant to be "turned on" while he recovers from surgery and his incision has healed.)

Five weeks later, the "bid day" has arrived, and Steve is ready to start! He plugs in the computer, turns it on and "voila" it works!! (Compare to: On November 20th, Aiden's implant will be turned on for the first time at CHEO.)

Hmmm, okay, so Steve has a computer, and it's plugged in and working - how come he doesn't know how to use it? Ah, right - this is all new for Steve. I guess he better take some classes and learn how to use this thing! (Compare to: Although Aiden will be able to hear on November 20th, sound will be a brand new thing for him. It will take lots of time, and lots of work and therapy to teach him that sound is important, what it means and how he can best make use of it.)

I hope that helps!!!

October 23, 2006 - One Week After Surgery

2006-10-23T12:07:00.000-04:00

Aiden's post-op appointment with his surgeon apparently went well this morning. I'm at work in Belleville today, but Ric sent me a text message earlier with the Doctor's comments of, "Looks like he's doing great. See you next time." I bet he's glad they went all the way to Ottawa for that news!! :> I'm still not sure what kind of bandage Aiden is left with. I should find that out...

October 22, 2006 - 6 Days After Surgery

2006-10-22T19:48:00.000-04:00

Well, we've been back home since late Thursday evening and I think that Aiden is happy to be back. He has been sleeping much better, and really seems to be in great spirits. He has been playing up a storm with his brother and eating really well too. Aiden hasn't been out much, his only trip out of the house was a walk to the Taste of Country store with Ric, Noah and Bev on Sunday afternoon. It was a beautiful day here. They went into the store for a few minutes to look around and then walked back home (Aiden wore a sweater with a hood to the store - I think it would really freak people out to see a little guy with a partially shaved head and a big ugly bandage whether he was smiling the whole time or not!)

Ric, Noah and Aiden left for Ottawa at 5:00 tonight for a post-op appointment that Aiden has with his surgeon at 8:45 tomorrow morning. I work tomorrow, so I'm holding down the fort here. Noah says before they left, "Mommy, I will miss you, what are you ever going to do without us?" Too cute :> Actually, I haven't been here at this house alone for several years, but I think I'll manage...

PS: My Dad took these pictures at my parents' house of Ric and Aiden last night after "the boys" arrived in Ottawa. I'm not sure whether this bandage will be gone by tomorrow or not!

October 18, 2006 - Two Days After Surgery

2006-10-22T19:05:00.000-04:00

Aiden woke up bright and early at 6:00 am again today, but it didn't last long! Ric had him back down for a nap by 7:00. After his nap, the ENT Doctor came in and signed his discharge order. Aiden's big head bandage was removed (leaving a smaller bangade that you can see in this picture) and he was ready to go! By the time I got to the hospital at 10:00 with Noah, Ric and Aiden were packed up and ready to head home. This picture was taken in the hospital parking lot as we were getting into the van.

Aiden did really well for the rest of the day at my parents' house. He had a big, big nap in the afternoon, and spent the rest of the day playing and running around. He is a little unsteady on his feet, but that is the only difference that I notice in him. From what I understand, some adults who get Cochlear Implant surgery experience a bit of dizziness post surgery, so maybe Aiden is too.

Now, because I'm writing this after the fact, I can say that Ric and I were eating our words a little bit overnight this night. Aiden had an really, really terrible sleep. He was up most of the night, and although he didn't seem irritated or uncomfortable - he just had NO interest in sleeping. Ric took him downstairs at about 3:00 am, and I guess he was just a going concern until about 4:00 am. Then, he was up for the day at 5:30 am. Does this little child just not require rest????!!!

October 17, 2006 - Day After Aiden's Surgery

2006-10-22T14:56:00.000-04:00

6:00 am: Aiden got an early start to the day today! When he woke up, he was pretty groggy, and really just wanted to sit in the rocking chair with me and relax. But, before we sat, Aiden posed for this cute picture to show that he still has a smile, even early in the morning the day after surgery. :>

Aiden's nurse came in a couple of times, took his vital signs, and thought everything looked good. Aiden actually sat with me in the chair and watched a bit of Canada AM (He MUST have been groggy, because he ususally has no interest at all in TV. Or, maybe he just likes Shamus :>). Aiden's new IV doesn't seem to be bothering him too much. It is in his forearm, and the IV nurse put a board on it and wrapped it up with a terry facecloth and tape, so that seems to be working for him. He does play with his head bandage a bit, but it doesn't seem to be causing him too much discomfort.

7:30 am: Okay, now Aiden has really woken up and wants to be on the go! He has NO interest in sitting with me anymore, or hanging out in his crib. However, he is attached to an IV line and cord that are only about 3 feet in length. So, the distance he can travel is frusteratingly short (for both of us!). Plus, with only one dose of antibiotics to go, I don't want to take any risks of losing that IV again.

8:30 am: Breakfast time! I ordered Aiden pancakes, syrup, cheese and a banana from the Room Service menu (so cool!!). I actually figured that he might eat a little bit, and then I could finish the rest. But, he ate the WHOLE thing!! After breakfast, Aiden played a little bit and then the nurse came in to give him his last dose of Antibiotics and take his IV out. Taking the IV out went considerably smoother than putting it in. Once Aiden was free of his IV, there was no holding him back. He was on the go and wandered out of his room, and up and down the hall of his wing (much to everyone's amazement!).

10:30 am: I put Aiden down for a nap, and went downstairs to get a coffee. When I got back, my Mom was in the room with Aiden, and he was wandering around again! Does this boy EVER get tired? I was really starting to wonder. Aiden's nurse had told me about a playroom for their overnight guests just down the hall, and so all three of us went for a walk down there.

It was at the playroom that I found a computer with an Internet connection, and posted the following quick message on this Blog (which some of you have seen). It is so clear that I wrote this in a hurry (nice spelling and grammer Nicole!) and was so disjointed that I was going to delete it. But, I changed my mind. One day Aiden will likely want to read exactly what I had to say to let everyone know how he was doing. So, here it is again:

Everything went amazingly well with Aiden's surgery!

When the surgeon first met with us, he was pretty sure that Aiden would just be having the Mastoidectomy. But, when he went in, the Mastoid bone was free of fluid and infection, and he went ahead and did the whole implant surgery!

Aiden is doing really well today. Actually, we are in the CHEO playroom right now and Aiden is playing with my Mom. I found and internet connection here, so I'm taking a minute to let you all know how well he's doing. He just had his IV removed, and so he's happy to be out and about moving around.

The actual surgery yesterday went very well. The surgeon actually called it a textbook implant. The Audiologist was in the operating room before they closed him up to test the implant, and it works really well already. She even got some responses from the auditory nerve that she wasn't even expecting.

Aiden spent 2 hours in the recovery room where he mostly just slept with Ric and I holding him. Then we were admitted into his room, and he had a pretty unsettled evening. He lost his IV line, and getting a new one was pretty tramatic (for everyone involved!). But, after that (and a little Codine) he slept fairly well overnight.

This morning he woke up happy and hungry - he ate pancakes, cheese and a banana. They actually have a really cool way to serve food here. There is a room service line and menu, and when your child is hungry, you just call up and order something off the menu. It's then delivered to your room in under 20 minutes. Too bad the parent's can't order too!! I was joking with the nurse that I was going to order Tacos and Chili Fries for Aiden. She said maybe I should start with something a little lighter. I don't thing she got my joke :}

Well, my Mom is chasing Aiden down the hall, so I better sign off. Needless to say, his recovery is going well. If all continues this way, we should be going home tomorrow.

11:30 am: Aiden has played and played (and totally charmed the Playroom volunteers) and walked and walked. So, Mom and I ordered him some lunch with the intent of putting him to bed right after. The last cute picture above is of Aiden having his lunch of Kraft Dinner, carrots and grapes - which he wolfed down (singing to himself all the while!!). After lunch, we managed to get him to sleep. We had to stand outside of the room so that he couldn't see us to actually get him down.

12:30 pm: Mom bought me lunch at the hospital cafeteria, and we brought it back to eat in the room. Then, after a whole 45 minute sleep, Aiden was up again. There was more walking, and more playing in the playroom. We even had a couple of visitors.

3:15 pm: Ric and Noah met up with us on our way back from the playroom, so we went back and played some more! This child of ours is supposed to be a bit tired and lazy from a SEVEN hour surgery yesterday right? Not a chance! Noah gave Aiden a very cute little John Deere Combine that he picked out from the gift store :>

4:45 pm: Mom and Noah headed home.

6:00 pm: I headed home, and left Ric with Aiden for the night. I think when I got back to my Mom and Dad's that I was asleep by 7:30 :> I was so tired.

Overnight: Aiden and Ric had a great night. Aiden had a sound sleep, and by the sounds of it so did Ric!!

October 16, 2006 - Day of Aiden's Surgery

2006-10-19T12:29:00.000-04:00

The following is a story about the most fantastic day of Aiden's Cochlear Implant surgery.

5:20 am: Ric and I dragged ourselves out of bed at my parent's house and went about getting ready to go to the hospital. We had a big bag to pack for Aiden and myself, because we knew that neither one of us would be home for a couple of days. We made sure that we packed up lots of Aiden's favourite toys and familiar blankets (with his "home" smell) and a couple bottles of apple juice. We remember from past surgeries that, post-op, Aiden is REALLY thirsty, and apple juice is his favouite drink.

5:30 am: Noah was woken up when Ric and I got up (he was sleeping with me, because "Nanny" was in his regular bed at his Grandma and Grandpa's), and couldn't get back to sleep. So, he climbed in bed with Nanny and they talked and played games for awhile.

6:00 am: Aiden wakes up, and my Mom got busy changing him and getting him dressed for the big day. Ric and I had a bit of breakfast, and tried to eat while Aiden's attention was somewhere else so that he wouldn't want to eat what we were having.

6:35 am: Okay, so this is a bit later than we wanted to be leaving, but by now we are in the van and headed for CHEO. Luckily the traffic isn't bad.

7:10 am: We get all of our papers signed at CHEO's admitting department, and they send us up to the third floor to the day surgery area, where we wait and wait. There is a playroom in the waiting room, and Aiden played with toys, with other children awaiting surgery (as an aside - the day surgery room in a children's hospital is the oddest place becuase you know that all of these sweet little children are about to go into surgery for one problem or another and their parent's are all going through what we're going through. But, everyone is just hanging out playing with toys) and, of course, Aiden is taking off and walking up and down the halls. As always, lots of people remark on how cute our little munchkin is :> No one asks why we're there, and we don't ask anyone else why there are there.

8:15 am: Aiden's name is called and we meet up with a nurse to answer a hundred questions about Aiden's history. The nurse takes his blood pressure and temperature, double checks his hospital band, and gives "Lamie" (Aiden's stuffed Lamb - very original name eh??!) a sticker to identify him so that he can go into surgery and recovery with Aiden. The nurse then gives us a yellow striped pair of hospital PJ's to dress him in, and we take him to the locker room to get changed. Then, we head back to the waiting room to play some more.

8:45 am: One of the Audiologists that we know very well comes by the waiting room to give Aiden a portable Tymp test. His fluid levels still look good, but the Audiologist again warn us that his levels, although good, are "boarderline", and that we should really be prepared for only half of the surgery to be completed today (a Mastoidectomy).

9:10 am: Aiden's name is called again, and we are escorted down the hall to the surgery hallway. It is here that our surgeon meets with us to tell us about Aiden's surgery, and we get to meet his Anestigiologist. Again, the surgeon explains all about the Mastoidectomy and basically talks about the Implant surgery as an aside, "if all goes well." He says that he is hoping for the best, but will make the "best surgical decision". He says that Ric and I can come to the OR information desk at about noon to ask how far he was able to get.

9:30 am: Ric and I go down to the cafeteria to get a bite to eat and a coffee, and then we head up to the (very cramped!) surgery waiting area and began our long wait.

11:50 am: With A LOT of trepadation, Ric and I went down the the OR desk to find out our fate :> And, GREAT NEWS!!! they were able to go ahead and do the full implant surgery. It's hard to say what my reaction was to this. Honestly, I was expecting it to go the other way so much that it took awhile for the great news to sink in (it still hasn't, and I'm writing this 5 days later!). We made a few phone calls to let others who had also been anxiously waiting what we had learned, and headed back to the waiting room. We were told that Aiden was doing well, but would still be in surgery for another 2 or 3 hours.

3:00 pm: The Audiologist comes to meet us in the waiting room to tell us that she has gone into the OR to test the Implant. And, not only does it work (good thing!), but she was able to get some responses from Aiden's Auditory Nerve from her sound stimulations that she wasn't expecting to get. She thinks this is great, and so do we! Again, she says that Aiden is doing well. He is just having his head x-rayed (to ensure that the electrode aray is sitting properly in his cochlea), then he will be bandaged up and sent to recovery.

3:45: The surgeon comes out to meet us in the waiting room post surgery to talk with us. His words are, "I don't really know what else to tell you other than what the Audiologist said, it was a textbook implant surgery." He answers a couple of our questions, and gives us post-op instructions. While he is talking to us, a nurse comes to tell us that we can go into recovery to visit him now (and gives us a tiny bag with Aiden's hair in it :>).

4:00 pm: When we saw Aiden in recovery, he was very, very upset - crying his little heart out. But, as soon as we picked him up he settled right down and fell asleep. However, it was really hard to hold him and keep him comfortable. Aiden's head bandage was really big and awkward, and he was attached to a SAT monitor, blood pressure monitor and IV line. Every time he moved I thought I was going to pull one of his lines out of order. Really, after that, he was just uncomfortable. He was so tired, and clearly disoriented, and just could not get comfortable. I held him, Ric held him, he laid down - nothing seemed to work. Finally, the nurse let him have a drink. He finished THREE bottles, and that settled him a bit.

5:00 pm: I knew that my Dad (Lewis) and Ric's mom (Bev) would be coming to the hospital soon, so I went downstairs to find them. I met up with them in the hospital parking lot, and let them know that they came just in time because Aiden should be leaving recovery and going up to the overnight floor at 5:30.

5:30 pm: Bev and Lewis waited for us right outside the recovery doors, and so they were able to go up with us and a nurse to the 5th floor. Ric carried Aiden and his IV pole up, and both Bev and Lewis were surprised at how alert he was just a few hours after surgery.

6:00 pm: This is about when the picture at the top of this posting was taken. Bev was the most successful to this point of getting Aiden to settle down, and so she sat with him and held him for awhile.

6:30 pm: My dad headed out back home to sit with Noah so that my Mom could come and have a visit too.

7:00 pm: Auntie Sharon arrives for a visit!!

7:15 pm: My Mom arrives too. (Note: The hospital staff were VERY good. Aiden is really only supposed to have 2 visitors at a time, including parents, and we had 5 people in the room at this point. They even brought us chairs!!)

7:45 pm: Aiden's nurse noticed that his IV had gone inerstitial (came out of the vein) and needed to be replaced. Aiden still had 2 doses of IV antibiotics to get, and needed the IV until morning at least. So, the IV team was called up. As it turned out, they were doing an emergency PIC line in the OR, and we had to wait.

8:00 pm: Visiting hours are over and my Mom and Sharon head home. Ric and Bev stay to help me get through the IV change.

8:20 pm: The IV nurse comes to change Aiden's IV, and it is NOT pretty. Aiden just doesn't have good veins for IV lines. First of all his little hands are still small, and there aren't any straight veins in them - they all curve. Plus, Aiden has had so many IV lines in his lifetime (already) that his veins are full of scar tissue. So, the IV needle starts, but can't be fully inserted. It is clear from the sores on his hands that they tried many times in the OR to find a good IV vein pre-surgery. It took Ric, myself and nurse to hold Aiden down while the IV nurse tired to get an IV in. She had a lot of trouble, but at least we got to pick Aiden up and hold him between "tries." This was really hard. Near the end, I was really lightheaded, and I really thought that I was going to be sick. I sat in the bathroom for a minute, and then they were finally done. I swear, I have seen Aiden get many, many IV's in the NICU and it was never this hard to go through.

8:50 pm: Ric and Bev headed home for the night. I tried to get comfortable on my "chair bed" and finally Aiden slept.

Overnight: Aiden had a pretty restless sleep. Thankfully, someone had brought a rocking chari into our room and I was able to rock him several times to get him back to sleep.

October 15, 2006 - Day Before Aiden's Surgery

2006-10-15T21:52:00.000-04:00

Well, it's 10:00 pm on Sunday, and I really should be going to bed :> I guess we have a big day tomorrow...

Aiden's surgery is scheduled for 9am, and we have to be at the hospital at 7am. Aiden's fasting details are pretty easy to live with - no milk after Midnight, and nothing else to drink after 6am. He probably won't even miss anything.

Aiden had a good day today, and he was feeling great. We are in Ottawa at my Mom and Dad's, and Ric's Mom is here too.

Aiden will stay in the hospital for 2 nights, and I will send a post as soon as I can with an update on how he's doing.

Well, here we go!...

What Happens During Cochlear Implant Surgery?

2006-10-11T09:34:00.000-04:00

The internal component of the Cochelar Freedom Cochlear Implant (including the attached electrode array) is implanted totally beneath the skin. The surgery usually takes anywhere between 3 and 6 hours. Here is what happens during that surgery:

1. Prior to surgery, the area of the head where the cochlear implant will be placed is shaved.
2. While Aiden is under general anesthesia, the surgeon will make an incesion behind his ear.
3. The surgeon will then form a small depression in the mastoid bone behind the ear to hold the cochlear implant in place.
4. The electrode array is inserted into the cochlea, which is adult size at birth, through an opening near a structure called the round window. The thin, tapered, and flexible construction of the Freedom electrode array minimizes damage during insertion and helps it conform to the cochlea's curved shape.
5. The incision is then closed and the head is bandaged. Once the skin heals, the implant is hardly noticeable; only a slight bump remains. Depending on your hairstyle, this will usually be covered.

How long does it take to recuperate?

It generally takes 3-5 weeks after surgery for the incision to heal. However, most implant recipients feel well enough during that time to resume their normal activities. After this time of healing, the implant will be "turned on."

This information was adapted from the Cochlear "Issues and Answers" book (for the Nucleus 3 implant system, but I'm pretty sure it is the same for the Freedom system too).

October 10, 2006 - Six Days Before Surgery

2006-10-11T09:30:00.000-04:00

Well, a big weight off our sholders today. We emailed CHEO with our decision to go with the Cochlear Freedom brand of implant, and now we're ready to go!

However, we did recieve an email today from one of the staff at CHEO that read,

"Thanks Nicole, yes I did get that information from Paula [NM: the information that Aiden's right tube was open, and looked clear of fluid from the Tymp test] and that was good news; please keep on keeping the aid off the right ear as we discussed previously; I want to be sure that you understand that the open tube is good news but the surgeon may still find some small amount of fluid internally in the mastoid; he would then be forced to do the procedure in two stages; first doing the mastoidectomy and then the implant 2-3 months later."

I had vaguely remember knowing this, but needless to say, I was pretty deflated by this news. I guess the roller coaster continues :> We are sure hoping this doesn't happen. If you are interested, keep reading on to learn a bit more about what a Mastoidectomy is...

A Mastoidectomy is a surgical procedure to remove an infected portion of the bone behind the ear when medical treatment is not effective. This surgery is rarely needed today because of the widespread use of antibiotics.

Purpose

Mastoidectomy is performed to remove infected air cells within the mastoid bone caused by mastoiditis, ear infection, or an inflammatory disease of the middle ear (cholesteatoma). The cells are open spaces containing air that are located throughout the mastoid bone. They are connected to a cavity in the upper part of the bone, which is in turn connected to the middle ear. As a result, infections in the middle ear can sometimes spread through the mastoid bone. When antibiotics can't clear this infection, it may be necessary to remove the infected air cells by surgery. Mastoidectomies are also performed sometimes to repair paralyzed facial nerves.

Description

There are several different types of mastoidectomy:

Simple (or closed). The operation is performed through the ear or through a cut (incision) behind the ear. The surgeon opens the mastoid bone and removes the infected air cells. The eardrum is cut (incised) to drain the middle ear. Topical antibiotics are then placed in the ear.
Radical mastoidectomy. The eardrum and most middle ear structures are removed, but the innermost small bone (the stapes) is left behind so that a hearing aid can be used later to offset the hearing loss.
Modified radical mastoidectomy. The eardrum and the middle ear structures are saved, which allows for better hearing than is possible after a radical operation.
The wound is then stitched up around a drainage tube, which is removed a day or two later. The procedure usually takes between two and three hours.

October 9, 2006 - One Week Before Surgery

2006-10-10T09:39:00.000-04:00

After months of debating which Cochlear Implant to choose for Aiden, we finally came to a decision today!

It's Thanksgiving Monday, and my Mom, Dad, sister and Ric's Mom are over for Thanksgiving dinner. Ric and I have been talking back and forth all day about the pros and cons of each brand of Implant (see "Choosing a Cochlear Implant" for details). After dinner over coffee, Pumpkin Pie and Whipped Cream we had a big round table discussion about it. Finally, Ric and I were on the same page about which Implant to choose (we had been going back and forth all this time, I would choose one and Ric would choose the other - a day later we would both switch!).

Tomorrow morning I will send emails to CHEO and let them know that we opted for the Cochlear Freedom Implant.

October 4, 2006 - 12 Days Before Surgery

2006-10-10T09:38:00.002-04:00

As many of you know, we have had a lot of challenges with fluid in Aiden's ears. This fluid has actually postponed his surgery once already. Aiden has tubes in both ears (which have had to be replaced once already) to drain that fluid out.

Today we had an appointment with our Audiologist in Kingson that we have been looking forward to with great anticipation (and some nervousness!).

The Audiologist performed a Tymp test on Aiden (A Tympanography involves inserting a small device into the ear canal to measure eardrum absorption of sound under different air pressures. It shows how well the Eustachian tube is working, and how well the eardrum can move. A graphic printout, called a tympanogram, illustrates the movement of the eardrum. This graphic printout is also supposed to indicate levels of inner ear fluid as well).

And, great news!!! The test showed that Aiden's fluid levels are good. And, his right ear tube is open :>

While we were at the Audiologist's office, she noticed that there was a lot of discharge in Aiden's left ear. An ENT had a look at his ear, drained the fluid with suctioning and gave us antibiotics and ear drops to clear up an infection.

But, the main news of the day is that his right ear looks good - and that's the ear they want to Implant.

Aiden at 21 Months of age

2006-10-05T20:03:00.000-04:00

Aiden at 21 months old (18 months corrected) is busy, busy, busy (and a lot of fun!). He is now walking all over the place, and even tries to RUN around after Noah - which results in both of them laughing hysterically at each other. Aiden had an appointment yesterday at Special Infant Clinic with one of the Doctors who saw him in the NICU. She was amazed at how well he was doing, and very happy to see him. His gross and fine motor skills were assessed at about a 12 - 14 month level, but the OT who did his testing said(given his rocky beginning) that this was amazing! So, 11 days before surgery, we have a happy and healthy boy.

Sign Language

2006-10-05T19:37:00.000-04:00

Shortly after we learned that Aiden was deaf, we met with a Home Visiting Teacher from Sir James Whitney School for the Deaf in Belleville. She explained to us that we had several different options to choose from regarding how we were going to communicate with Aiden. In short, we could choose (these are pretty loose descriptions, by the way...):

1. AV (audio-verbal) therapy only. In this case, we would try to use very few gestures with Aiden, and try not to give him visual cues when speaking to him. Some AV teachers even cover their mouths when they speak, so a child will not learn to lip read. We would work our very best to try and get Aiden to communicate with us by listening and speaking only.
2. ASL (American Sign Language) only. In this case, we would not try to teach Aiden to hear or speak, but we would concentrate on teaching him to communicate with Sign Language.
3. Total Communication. We would try and teach Aiden to communicate using a variety of different methods. We would teach him Sign Language, teach him to listen and speak, teach him to lip read, and give him plenty of visual cues along the way to aid his comprehension of what we were saying to him.

We choose the Total Communication approach, and were set up with an AV Therapist and an ASL consultant on alternating weeks.

Now, at that time, there were no ASL consultants available in Belleville, so we proceeded with AV Therapy alone, waiting for an ASL consultant to be assigned to us. During this time, we met and talked to lots of hearing parents of deaf children. Some of them were really glad that they had learned Sign Language (in varying degrees), and some of them were glad that they had not.

One family told us a story that made some sense to us. Her entire family and extended family are hearing. Her child was born deaf. And, learning Sign Launguage takes time, as it IS like learning a whole new language (obviously!). Her reaction way, is her WHOLE family really going to learn ASL in order to communicate with her child? She suspected not, and went the way of AV Therapy alone (with a Cochlear Implant).

And, once we started to be seen by the staff at CHEO in the Cochlear Implant program, they cautioned us that ASL would not really be needed after Aiden was Implanted - as he would then be a 'hearing' child. They also cautioned us that, ASL takes time to learn, and perhaps that time might be better spent on Aiden's AV Therapy.

So, even when an ASL consultant became available, we didn't pursue it. Then, Aiden started having trouble with fluid in his ears, and his Cochlear Implant surgery was postponed, and postponed and postponed. We started to realize - this child is going to be 2 years old, and we have no "real" way of communicating with him! So, we got busy trying to learn some ASL on our own, and contacted Sir James Whitney again about hiring an ASL consultant.

And, 3 lessons in, we are SO glad that we did!! We really, really like our ASL consultant. Plus, Aiden seems to have a real connection with her. Especially in our first lesson, he really seemed to get that she was trying to communicate with him in a way that he could understand. And, the lessons are helping us out a lot with our Signing as well. We are quickly learning that the Sign Language that you can learn from a book is quite different than Sign Language actually in use. Our consultant is very animated, and we never realized what a big part of Sign Language facial expressions are.

Plus, I don't know why this never occured to me before but, I think that it is really great that Aiden has meet someone else who is deaf. As he has be born into a hearing family, I think that a connection with someone else who is deaf will be important for him.

So, slowly but surely we are picked up some Sign Language. It is hard to get in the habit of showing Aiden signs for things, but we keep at it. I think teaching a child ASL would be a lot faster if the parents used it as a first language, and it was second nature to them. We really have to think about saying things AND signing them -and we don't always remember to do that.

I think that, even after Aiden's Implant, we will continue to keep up with some Sign Language. Aiden is still a deaf child. And, when the implant is off (ie: when he's swimming, bathing or in the night) it will be nice to still be able to communicate with him.

How Did We Learn About Aiden's Hearing Loss?

2006-10-05T10:39:00.000-04:00

We learned about Aiden's hearing loss in stages, over the course of many months. Here's the story:

May, 2005: a couple of days before Aiden's discharge from the NICU, he was given a routine Hearing Screening Test from the Ontario Infant Hearing Program. To read more about the Risk Factors for Hearing Loss that were identified in Aiden prior to taking this test, please see our entry entitled, "Why is Aiden Deaf?". Ironically, the results of this test were inconclusive, and Aiden was scheduled for a repeat of this test after discharge on August 9th. At this time, we were told that the tester knew that the hearing test would be inconclusive because Aiden was really squirmy during the test, and was making lots of noises. Apparently, these are not good conditions for the test. The day after the test, I asked Aiden's nurses whether they thought he could hear. They actually thought that he could. One of his nurses commented that Aiden seemed to be comforted by me when I was there, and they attributed this to his hearing my voice.

August 9, 2005: This was our follow up test from the NICU screening test. We were told to bring Aiden to the Belleville General Hospital when he was very, very tired. The ABR (or BERA) test that he had on this day needed to be done while Aiden was asleep. For this test, sounds are placed in the ear, and the brainstem's responses to those sounds are recorded by a computer from electordes taped to Aiden's head. Well, even though Aiden was extremely tired when we brought him in (which, by the way, it is REALLY hard to keep a small baby awake when they are tired), we couldn't keep him asleep. The Audiologist was only able to complete the test for Aiden's Right ear before he woke up. And, despite A LOT of trying (I think Aiden and I were there for 3 hours) we couldn't get Aiden back to sleep. Sadly, the results of the test showed that his right ear was not responding to any sounds. We left this test with the hope that, although the hearing looked damaged in his right ear (and, at the time, we really didn't realize what this really meant) it was entirly possible that there was good hearing in his left ear. We were scheduled for another try at this test on August 25, 2005 in Kingston. At this meeting I was told about the possibility of a Coclear Implant for children with a severe hearing loss who do not even benefit from hearing aids (we had never ever heard of such a thing before). This information at least gave us some hope. Although, truth be told neither Ric nor I had NO idea at the time what it meant to have a deaf son, and all of the implications that it would have upon our lives.

Mid-August, 2005: At home, we all spent a lot of time trying to figure out ourselves whether Aiden had any hearing or not. We would make a loud sound out of his sight, and see if he would respond. Oddly enough (knowing what we know now) sometimes he responded. However, he DIDN'T respond often enough to cause us question. Sometimes we would explain this away with his stay in the NICU. After all, he spent the first 5 1/2 months living in a very busy, very loud, 24-hour a day environment. Maybe he was just used to loud noises, and therefore didn't pay them much attention. It's amazing what will give you hope... And, there were the times that Aiden did respond to noises. For example, I would have sworn that he didn't like the sound of the vacuum cleaner. (Or, maybe I was just looking for a break from the housework :>).

Also, Aiden has always been a VERY visual little boy. He really looks at faces, and takes lots of clues from facial expressions. Sometimes, his quick and clear responses to people's visual cues are easily confused with thinking that Aiden can actually hear you.

All in all, as we waited for the next hearing test, I think we were all of the opinion that we wouldn't have been surprised either way whether Aiden could hear or not.

August 25, 2005: So, our instructions were to again bring Aiden to this test when he was really, really tired. And, given what happened last time, we actually did a great job of this. In fact, I remember the drive up to the test from Belleville to Kingston. We had played and played with Aiden all morning trying to wear him out. Well, that worked. In the car, literally 2 minutes down the road, Aiden fell asleep. I woke him up (he was NOT pleased with me) and we continued on. About half way to Kingston, Aiden fell asleep again and I could not wake him up. Ric actually had to pull over on the side of the 401 so that I could take Aiden out of his car seat to wake him. The poor little guy cried the entire rest of the way to the hospital. But our efforts were in vain. Again, Aiden slept through some of the test, but wouldn't sleep through the whole thing. We still didn't know whether he could hear or not. Our Audiologist's recommendation was that we do the test AGAIN, but do it while he was sedated. The Sedation Hearing Test was booked for October 26th.

October 26, 2005: Well, on this day, with a little help from a sedative, we managed to keep Aiden asleep long enough to complete his hearing test. Sadly, the results were not what we were hoping for. The test they used can measure the brainsteam responses to sounds up to 90 db (pretty loud). Aiden had no reaction to sounds this loud, and at the end of the test he was diagnosed as being severe to profoundly deaf in both ears.

At this same appoinment, we were amazed at the resources that we were immediatly connected with as soon as we had our diagnosis. We were set up with people from Sir James Whitney School for the Deaf, the Canadian Hearing Society, people to help us with special disability funding and more. And, just one week later, we had an appointment for Aiden to be fitted for Hearing Aids.

I don't really know how to describe what the news was like to learn that Aiden was deaf. As you can see, it wasn't like we thought he could hear one minute and learned that he was deaf the next. This progression of slowly learning I think helped to lessen the blow. Plus, in the midst of all of this, we did learn a bit about the Cochlear Implant program which gave us some hope. And, during this time Aiden also saw his Pediatrician in Belleville a lot. This doctor knew what we were going through, and told us that of all of the things that could have befallen Aiden, a hearing loss was one of the "better" ones. Such leaps and bounds are being made in the area of restoring hearing loss that it was something that could be overcome (whereas some of the potential hazzards that Aiden faced could not have been).

Having said that, that October day of Aiden's diagnosis was really hard. I was sad for Aiden, worried for Aiden, and sad for us. Now, here we are almost exactly one year later, filled with hope. We've got such high expectations for his Implant surgery. To think that Aiden will be hearing and speaking well for his age by the time he goes to school is nothing short of totally amazing.

Why is Aiden Deaf?

2006-10-05T10:06:00.000-04:00

Well, the short answer to this question is that we don't really know.

The longer answer is that Aiden could have lost his hearing due to a number of factors (although all relate to his prematurity).

Before Aiden was discharged from the NICU, he was given a Hearing Screening Test from the Ontario Infant Hearing Program. Before the test, parents have to complete a Form for their child, and part of that form is a section about Risk Factors for Hearing Loss. Ironically, Aiden didn't fail this hearing test - his results were inconclusive and he was scheduled for a repeat of the test after discharge. There are 15 risk factors identified, and Aiden had the following 4 of them:

1. Birth weight of less than, or equal to, 1200 grams (Aiden weighted only 550
grams at birth.
2. HFO/HFJ ventilation [High Frequency ventilation] (Aiden was on a ventilator for
77 days, part of which included High Frequency ventilation).
3. IVH (Intraventricular Brain Hemorrhage) grade iii or iv (Aiden suffered a grade
iii or possibly grade iv IVH on the left side of his brain).
4. Other very high risk identified by physician (Aiden had several courses of
anti-infection medications which listed hearing damage/loss as possible side
effects. These ototoxic medications included: Gentamycin, Vancomycin, Lasix &
Amphotericin B).

One of Aiden's Doctor's described him as having a "cocktail" effect of hearing loss risk factors. It could have been any one of the four factors listed above that caused his hearing loss, or any combination of the four.

All I can say (relatively certainly) is that Aiden was probably born with hearing, and that hearing was severely damaged during his stay in the NICU. Having said that, we do take some comfort in the fact that the risk factors that he experienced were either unavoidable (ie: low birth weight) or were encountered out of necessity to save his life. Sure, the NICU staff could have chosen to withold a ototoxic medication, but the infections that they were intended to fight could have claimed his life. There's not much point in having a hearing baby who isn't alive to enjoy his hearing.

At the end of the day, Aiden's hearing loss is something that we will live with for the rest of his life. It is part of who he is. And, for the most part, the "why" doesn't really matter.

Aiden at 20 months of age

2006-10-02T13:55:00.000-04:00

Our little Aiden is a happy, and very busy, 17 pound 20 month old. We see many of the traits that kept him alive and fighting in the NICU still present in him today. Aiden is strong willed, determined and has both strength and attitude that contradict his tiny stature. And, as of about 2 weeks ago, Aiden is walking! He started off with just one or two steps between furniture, and is now taking 15 or 20 steps just out into the open. He gets a big kick out of trying to keep up with his older brother Noah.
Aiden communicates with us mostly by pointing and making "ah, ah, ah" sounds. He rubs his eyes and gets fussy when he's tired, pulls on my leg when he wants to be picked up and practically launches himself out of your arms when he wants to be put down.
I think that Aiden will do really well with a cochlear implant. Despite being profoundly deaf since birth (or close anyway), he is a very vocal child. He babbles away to himself when he's playing with toys, and makes sounds when he wants something. He will also copy coughing and "ahhhh" sounds - although I think he is more copying the mouth shape than acutally hearing the sound.

Helpful Things

2006-10-02T13:40:00.000-04:00

Choosing a Cochlear Implant

2006-09-28T13:26:00.000-04:00

Aiden will be having his implant surgery at CHEO (the Children's Hospital of Eastern Ontario) in Ottawa, Ontario Canada. At CHEO, implant candidates are given the option of choosing between two Cochlear Implant brands; Advanced Bionics and Cochlear Americas.

Let me start by saying this: we have talked to a lot of people during the process of deciding which brand of Cochlear Implant to choose for Aiden. And, everyone that we have spoken to (including: the surgeron, Audiologists, ENTs, AV Therapists, an executive at one of the Implant companies and parents of other CI children) have all said the same thing - we can't make a bad decision. With either Implant, Aiden will learn to speak, listen and live well in a hearing world equally well (although each functions quite differently). If, at any time in this decision making process, someone who knew what they were talking about told us that one Implant would provide "better" hearing for Aiden, our decision would have been easy. So, having said that, our choice is coming down to a decision based on the following advantages and disadvantages. (Note: this is in no means intended to be an "official" list, it's just what our opinions are, based on information available to us, currently.)

Advanced Bionics Advantages:
1. No earpiece with the Body Worn Processor model. Knowing Aiden and his irritation with wearing hearing aids - this is a big advantage for us.
2. Firefly lighted indicator for ear level visualizatoin that helps parents and teachers know the status of a child's processor (with BTE).
3. A convenient power option: full day of operation time, charge the battery while Aiden sleeps and don't worry about it all day. Quick and easy to change power cells. Users can go for years without re-ordering PowerCells. (Also, we know that there is a potential advantage with Advanced having an available "AA" battery option, but if you have forgotten to bring that with you, you have lost any advantage of being able to use store bought batteries in a pinch.)
4. Bionic Ear Association support network. There is a "matching program" that introduces you to another Bionic Ear user with similar circumstances, good technical help, personal contact assigned, newsletter, looks like good events.
5. We know someone in upper management with this company.
6. More durable processor?
7. Larger controls are easier for a child to operate, once they are old enough to understand how.
8. Very clear and large dials allow parents, at a glance, to see what the Processor's current settings are.
9. We have heard of a teaching program coming to Canada that I have been asked to keep under wraps, but this is an advantage in our minds.
10. We know a boy who is 12 and doing amazingly well with an Advanced Bionics Implant. We can't say that for Cochlear (although this doesn't make it not true, we just don't know anyone).

Advanced Bionics Disadvantages:
1. Not very attractive design for a young boy. Processor is huge (okay, relatively), and Aiden is very small. Looks like it has been designed for a "stylish" female senior (ie: big dials, platinum colour, scripty font, square design - can you tell that I'm a Creative Director?).
2. Because of the size and weight of the processor, we would have to use a backpack, and I don't really like that idea.
3. No lockable controls.
4. Dials can get dirty and sandy? We know there is a cover available, but one Advanced family we know never uses it.
5. This company had a recall - is reliability an issue?
6. I mentioned that the large easy to use dials might be an advantage, but they also may be a disadvantage in that Aiden loves to play with dials and buttons, and I think he would be forever playing with it and changing settings.

Cochlear Advantages:
1. Lightweight stylish processor. Great looking accessories for a youth market. Looks like "Aiden."
2. Customer service program seems really good. The brochures, information packages and website are very user friendly, and written in terms that are understandable and conversational. My thought is, if their promotional material is this easy to read (not true of Advanced Bionics we thought) than any other user or help manuals that they will supply us with should be equally user friendly. I like being able to understand the technology (even on the surface) of Aiden's Implant.
3. They invest over 15% of their annual revenue in researching better ways to restore hearing.
4. Water resistant (although Aiden won't be jumping through sprinklers with his accessories on, at least we won't panic if he's splashed in a boat or we're caught out in the rail)
5. Convenience of being able to buy batteries anywhere. So, if we forget batteries, or they run out, we're not stuck.
6. Carry case seems like a great protector - no sand and dirt in dials.
7. Long battery life - can go 4 days without changing batteries?
8. Use the phone with ease (and MP3 player, etc.)
9. Lockable controls to prevent accidental chyanges to settings - Aiden LOVES playing with buttons.
10. Claims they are the most reliable implant in the world
11. Claims to have "future-ready" electronics designed to handle a broad range of future upgrades and enhancements (does Advanced Bionics?)
12. MRI safe (is Advanced Bionics?)
13. Digital controls - I like that
14. LED display - I like that
15. Makes a sound when not on properly
16. Ric thinks that the extra "Ball Electrode" is a benefit, but I am not going to even pretend to understand this benefit ;>

Cochlear Disadvantages:
1. The earpiece, the earpiece, the earpiece. Do I have to say more? If Aiden won't wear the earpiece, then all of the other advantages don't mean a thing.
2. Batteries could get expensive - even with rechargables

Whew! So, after all that, what did we decide? Check out our entry entitled, "October 9, 2006 - One Week Before Surgery" to find out!

Aiden's Brother Noah

2006-09-21T13:30:00.000-04:00

Aiden's brother Noah is 3 1/2 years old. Noah is hearing, and was born 2 days late, weighting 10 pounds, 3oz - I guess we like to do things at extremes!
I'm not sure how much Noah understands about Aiden's hearing. He knows that Aiden puts hearing aids on to hear better, and he knows that Aiden goes to a lot of appointments about his hearing, but still talks as if Aiden can hear him. Noah calls out to Aiden to try and get his attention (and gets frusterated when Aiden doesn't respond!).
Noah is doing amazingly well with Sign Language (although he doesn't understand why our ASL [American Sign Language] teacher doesn't speak aloud to him :>). I think Noah probably knows about 20 signs, and you really only have to show him once what a sign is and he will remember it. Plus, Noah is constantly asking, "how do you spell sign language for" this, that and another thing.
I think that Noah is going to be a great help to Aiden (and the rest of us!) once Aiden starts his AV Therapy post implant switch on. Noah already plays 'listening' sound games with Aiden, and really seems to get the fact that we are trying to teach Aiden what noises different things make. Plus, Noah is a regular chatterbox - I think he talks non-stop from the time he gets up until the time he goes to bed. That much exposure to a spoken language can't help but be good for a post-implant Aiden!
I think Noah and Aiden will be great friends (as long as Aiden stays away from Noah's trucks and tools...). Now that Aiden is starting to walk, Noah takes great joy in trying to get Aiden to chase him around the kitchen table :>

How a Cochlear Implant Works

2006-09-21T12:22:00.000-04:00

It's hard to explain how a cochlear implant works without a diagram (actually, you may have noticed that even with a diagram the process is a bit complicated), but I think this is the best description I've found so far. These images were taken from the Cochlear website(www.cochlearamericas.com), and explain the function of an implant with an "ear level" speech processor.

Because Aiden's ears are too small right now for this type of speech processor, Aiden will also wear a "body worn" processor, pictured below (in the hand). This body worn processor can be worn on Aiden's hip in a special holder, on his back in a special harness or inside his shirt with a special pocket (that I will have to talk Grandma into sewing!). Aiden will also wear an earpiece (as pictured above) but it will only contain a microphone.

Aiden spends 5 1/2 months after birth in NICU

2006-09-19T09:29:00.000-04:00

When Aiden was born on January 10, 2005, he weighted just 1 pound, 3 ounces, and was one of the smallest (if not THE smallest) baby to be born and survive in the Kingston, Ontario, Canada NICU. Aiden's time in the NICU was a rough one, and he was critically ill for most of his 5 1/2 month stay. He was intubated, and breathed through a ventilator for 77 days, spent time on CPAP, and was eventually even sent home on low flow oxygen. Aiden survived several serious episodes of sepsis, and needed to be recussitated with chest compressions and Epinephrine at least twice by NICU nurses and doctors. You can read the full story of Aiden's time in the NICU in the posting entitled, "Aiden's Discharge Summary."

It is not easy to give birth to a baby and have to leave him in the hospital because he is too sick to come home. It is not easy to see him live in an isolette and not be able to hold him, be intubated, have blood drawn every day, have countless uncomfortable tests performed and to have IV lines, leads and more sticking into every available part of him. It is not easy to see such a wee little person fighting (literally, as those of you who were there know all too well) for their survival every day - and know that that little person is your son. It is also not easy to have someone else be the primary caretaker of your son - to make very important decisions on his behalf, comfort him when he is upset, feed him, change him, talk to him, hold his hand and pat his bum (that one was for you Judy). However, having said all of that, what made our lives bareable for those 5 1/2 months was the caring nurses and doctors in the Kingston NICU. These people were Aiden's family when he was born. They cared for him when he was sick, they held him when he was upset, and they literally saved his life (on a few occassions!). Although it was painfully hard to know that I was only a visitor to Aiden, when we left the NICU for the day we ALWAYS knew that he was in extremely capable and loving hands. We will never forget the amazing people of the NICU, we love you, and you will always be an important part of the story that we tell to Aiden about his birth.

The 5 1/2 months that Aiden spent in the NICU were scary, overwhelming, stressful - and full of hope. And, they were the start of showing us what a strong and determined fighter Aiden truly is - and demonstrated that, even at a very young age, there are some people who have a will to live that is stronger than the odds would give them.

Aiden's NICU Discharge Summary

2006-09-18T20:33:00.000-04:00

Lots of people ask me about Aiden's stay in the NICU. I am transcribing his NICU Discharge Summary for those people, for those of us who lived through it and will be surprised to be reminded of the extent of what transpired and for people who are going through a similar experience. Aiden is a beautiful example of the fact that a tiny little baby can survive an awful lot.

Discharged Date: 2005 June 1

DISCHARGE DIAGNOSES:
1. Prematurity.
2. Intrauterine growth restriction.
3. Bronchopulmonary dysplasia.
4. Respiratory distress syndrome.
5. Patent ductus arteriosus [closed].
6. Retinopathy of prematurity.
7. bilateral inguinal hernia.
8. Feeding incoordination.
9. Intraventricular hemorrhage.

ONGOING ISSUES:
1. Feeding difficulties.
2. Bronchopulmonary dysplasia.
3. Postoperative follow-up of inguinal hernia repair.

PRENATAL HISTORY: Baby McKerracher was born to a healthy 32-year-old G2 P1 woman from xxx (city withheld). Early in the pregnancy, the maternal serum screening test was drawn and showed some abnormalities consistent with potential Down syndrome. An amniocentesis was performed at 19 weeks which has shown to be normal with normal chromosomal count. Other routine prenatal blood work was negative. The ultrasound performed at 20 weeks gestation, however, showed the first signs of grown restriction. Form 20 weeks on, Baby McKerracher was exhibiting increasing size; however, given his gestational age, he was found to be consistently smal lfor gestational age.

LABOUR AND DELIVERY: At 27 weeks gestation, there was a spontaneous rupture of membranes. At this time, Baby McKerracher underwent a biophysical profile which was found to be a 1/10. This was also associated with continually increasing maternal blood pressure. Because of these findings, it was decided that he should be delivered by C-section urgently. His mother did receive one dose of Celestone several hours before the delivery. The membranes were only ruptured for approximately eight hours. the GBS status was unknown. there was no sign of maternal fever or sepsis at the time. The baby was delivered by C-section and did quite well initially. He emerged quite vigorous, though very small. the Apgars were reported to be 8 at 1 minute and 9 at 5 minutes. He was initally given suction and oxygen by positive pressure ventilation. He was found to have increased work of breating at birth and was intubated and given one dose of Surfactant which did seem to improve his work of breating at the time. Shortly after delivery, he also had umbilical artery and umbilical venous central lines placed.

On initial physical exam, Baby McKrracher's birthweight was noted to be 550 gm, head circumference 23 cm and length 31 cm. All of these measurements placed him greater than two standard deviations below the mean. Despite being extremely small for gestational age, there was n other significant abnormalities noted on the initial physical exam for Baby McKerracher. However, a gestational maturity was assessed using the Ballar Scoring System and he was found to be roughly 24 weeks in matureity at the time of birht.

COURSE IN HOSPITAL: Baby McKrracher was born quite premature and spent a long and eventful time in the Neonatal Intensive Care Unit. He did suffer most of the many complications affilated with prematurity. The following is a summary of his course by system:

Nutrition, Fluid and Electrolytes: We did have some significant difficulty in establishing feeds with Baby McKerracher. He was placed on TPN on the second day of life, and he remained on TPN for 73 days in total. He did suffern from some evidence of TPN cholestasis. While trying to establish feeds, he did recieve mostly expressed breast milk by NG tube. We did experience some difficulty in trying to get him to feed via nipple. the Feeding Team at the Child Development Center was involved and had made some recommendations. We eventually were able to get him feeding with the nipple by providing him wiht some thickened feeds. At the time of discharge, Baby McKerracher was being closely followed by the Feeding Team and was thriving on entirely nippled feeds consisting of thickened NeoSure. Baby McKerracher was sent home on this thickened formula, and he wil lbe followed up by the Feeding Team. During his stay in hospital, he also did suffer from some of the typical electrolyte fluctuatiopns seen with prematurity, though there was no significant problems associate with this. His electrolytes were all normal at the time of discharge.

RESPIRATORY: Baby McKerracher was diagnosed with respiratory distress syndrome at birth and received two doses of Surfactant. Unfortunately, he want on to develop severe bronchopulmonary dysplasia. He had suffered from many complications from his BPD and had several significant desaturations requiring manual ventilation and high oxygen content. Because of his very volatile BPD, we did have him intubated for an extended period of time. He spent a total of 77 days intubated. He also received six days of intravenous Hydrocortisone in order to help stabilize his lungs. While in hospital, he was also treated for his BPD with Lasix. He spent approximately 70 days in hospital while on Lasix. He also received inhalers which he was still taking at the time of discharge. Following extubation, Baby McKrracher was weaned down to a minimul amount of low flow oxygen. We were unable to remove the oxygen entirely, and he was sent home with oxygen. He was requiring roughly 0.01 L/minute of low flow oxygen. At the time of discharge, he was quite stable on this minimul amount of low flow oxygen; however his blood gases inducated that he was a cronic C02 retainer with consisten capillary gas values of 70 mmHg.

CARDIOVASCULAR: Shortly after birth, physical exam indicated that Baby McKerracher had a murmur. An echocardiograph was performed which indicated the presence of a moderate PDA. Because of his extreme prematurity and the fact that he was also mildly symptomatic from this, it was decided to close the PDA via Indomethacin. He received one three-day course of the Indomethacin which closed the PDA successfully on follow-up echo. At the time of discharge, there was nothing to indicate on physical exam that the PDA had reopened. It should also be noted that Baby McKerracher did suffer from some significant episodes of desaturation resulting in bradycardia. He had one particular episode where he required chest compressions due to poor saturations which persisted for up to 10 minutes. He reuqired Epinephrine on this one occasion. (Nicole's note: Ric and I were actually in the NICU with Aiden when he had this one "episode." And, it was probably the strangest, scariest and most profound half hour of my life.) He also required chest compressions on three additional occasions.

GASTROINTESTINAL: Baby McKerracher did take quite a long time in order to establish oral feeds. Fortunately, ther ewas no evidence that he suffered from any necrotizing enterocolitis. He did develop an indirect hyperbilirubinemia at birth which was treated with phototherapy. The highest indirect bilirubin level was measured to be 198. He did not need any exchange transfusions for this. He also developed a component of TPN cholestasis. the maximum direct bilirubin that he achieved was 127. At the time of discharge his direct bilirubin was decreasing consistently. He did also have elevated liver enzymes which also were showing a decreasing trend. A the time of discharge, he was feeding and stoolign well without any significant problems. While in hospital, it was also noted that Baby McKerracher had bilateral inguinal hernias. He had these repaired surgically by Dr. Sarah Jones on May 17. He tolerated this quite well. He was also noted to have gastroesophageal reflux shortly prior to his discharge. He was placed on Maxeran and Ranitidine in order to help treat this problem.

NEROLOGICAL: On routine head ultrasound, it was found that Baby McKerracher suffered from intraventricular hemorrhage. In the end, he was found to have grade IV hemorrhage on the left side, and there were some mention made of potential periventricular leukomalacia. He also had grade I-II hemorrhage on the right side. Fortunately, he did not suffer any seizures while in hospital. It was also noted that at discharge, did did have a relatively normal neurologic exam with appropriate tone and limb movement. The one significant neurologic symptom that we were able to observe was some feeding incoordination.

INFECTIOUS DISEASE: Baby McKerracher suffered from three episodes of severe sepsis. One of these episodes was likely pneumonia. The others were confirmed bacteremia with positive cultures of Staphylococcus epidermidis. During one of these episodes, he also suffered from disseminated intravascular coagulation. He spent a lot of time of antibiotics while in NICU. These included 10 dyas on Gentamicin, 30 days on Vancomycin and 22 days on Amphotericin. These episodes of sepsis made Baby McKerracher critically ill and one of them was associated with significant desaturation requiring chest compression and Epinephrine. At the time of discharge, he had recovered from all of these episodes of sepsis.

RENAL: Baby McKerracher did suffer from some transient elevation of creatinine and BUN in association with episode of sepsis likely due to prerenal failure. At the time of discharge, his creatine and BUN had normalized, and he had maintained good urine output. It should be noted, however, that he was exposed to many nephrotoxic medications for prolonged periods of time during his stay.

HEMATOLOGICAL: Because of his prematurity and the episode of DIC, Baby McKerracher did require several transfusions. In the end, he ended up getting nine transfusions of packed red cells and six transfusions of platelets. The packed red cell transfusions were donated from his father. At the time of discharge, his blood counts had normalized with hemoglobin 106, platelets 320, white cells 12.4, and a high reticulocyte count.

OPHTHALOMOLOGICAL: Baby McKerracher did suffer from some significant retinopathy of prematurity and was followed by Ophthalmology while in hospital. His ROP reached stage III zone II in the right eye and the left eye. He was treated with laser retinopexy on April 12 by Dr. Dale. This was tolerated quite well with no complications. On follow-up examination, it was noted that hde did get extremely good results from the surgery with resolving retinopathy. It was noted that he had some mild residual tortuosity of his vessels and immature macular development. He wil lb efollowed up by Ophthalmology post discharge.

HEARING: Baby McKerracher had a hearing test, which was inconclusive just prior to discharge. He had been exposed to several ototoxic medicatons and this test should be followed up. There has been a repeat testing booked.

VACCINES: While in hospital, Baby McKerracher received one dose of Prevnar and Pentacel vaccines. Obviously, his caccination schedule has been delayed significantly.

DISCHARGE PHYSICAL EXAM: At the time of discharge, Baby McKerracher looked well and was stable on a small amount of low flow oxygen. His weight was 2735 gm (6 pounds), length 47 cm and head circumference 36.5 cm. He was noted to have a relativelty normal neurologic exam. His red reflexes were present bilaterally. There was no murmur heard. His vital signs were all within normal limits. the palate was intact. The hips were normal. Testes were descended bilaterally with normal male genitalia.

SUMMARY: Baby McKerracher was born prematurely with intrauterine growth restriction. He spent 5.5 months in the NICU and did suffer from many complications associated with prematurity. He spent much of his time critically ill and did require many emergency interventions during that time. Fortunately, during the last month-and-a-half in hospital, he has gotten over his major problems and was gaining weight on his thickened formula. Obviously, there will be need for some close follow-up from everal differnt people for him. He will be seen by Dr. Dempsey in Belleville for regular care. He wil also be seen at Special Infant Clinic and at the Child Development Center for the Feeding Team. He will also be seen by Ophthalomology in two months' time and be followe up by Dr. Sarah Jones for evaluation of his hernia repair. He will also be seen for repeat of his heraing exam.

DISCHARGE MEDICATIONS:

1. Elemental iron 7.7 mg qd.
2. Tri-Vi-Sol 0.5 ml qd.
3. Atrovent two puffs bid.
3. Ventolin two puffs bid.
5. Flovent 125 mcg two puffs bid.
6. Maxeran 0.25 mg q. 8h.
7. Ranitidine 3.8 mg bid.
8. Low Flow oxygen.