Wednesday, October 25, 2006

October 24, 2006 - 8 Days After Surgery

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!

Tuesday, October 24, 2006

So, can Aiden hear now?

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!!!

Monday, October 23, 2006

October 23, 2006 - One Week After Surgery

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...

Sunday, October 22, 2006

October 22, 2006 - 6 Days After Surgery

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

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

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!!

Thursday, October 19, 2006

October 16, 2006 - Day of Aiden's Surgery

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.

Sunday, October 15, 2006

October 15, 2006 - Day Before Aiden's Surgery

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!...

Wednesday, October 11, 2006

What Happens During Cochlear Implant Surgery?

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

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.


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.


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.

Tuesday, October 10, 2006

October 9, 2006 - One Week Before Surgery

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

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.

Thursday, October 05, 2006

Aiden at 21 Months of age

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

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?

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?

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.

Monday, October 02, 2006

Aiden at 20 months of age

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

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 They will tell you what to do. My card number is: 6028 3791 3850 2933. Thanks!