HAPPY HEARING BIRTHDAY AVA!!!!

One year ago today, lil Ava's cochlear implants were turned on. One year ago today, lil Ava heard sound for the very first time. One year ago today, was one of the most exciting days of our lives....ever. One year ago, our fears were released and we could take that deep breath....I mean that deep in-the-pit-of-your-stomach breath, and just let it all go. And as the days went on, and seeing how quickly Ava was adapting to the implants and how quickly she was learning new sounds and verbalizing, each breath became much easier. Ava was going to be o.k. Ava is going to have a bright future. Ava is going to go to school, just like a regular kid. No, the journey is not over. But the ride has been mostly exciting and positive. We had to learn not to dwell on her deafness. Not to dwell on the fact that she needs special equipment on her head to hear. But to dwell instead on how well she can hear and speak. To dwell on the bright future ahead of her. To dwell on how Ava has really glued this blended family together, by having all her siblings eagerly participate in encouraging her to learn to listen and speak. And how we are confident that Ava, with all her happiness, zest for life and chutzpah, will have the ability to advocate and stand up for herself. We have set the bar high and we don't look back. Ava, we are so proud of you!

Here's a little video of Ava enjoying one of her favourite books..........

A little game we play

I have attempted many times to take a good video of Ava talking. But the little stinker never wants to perform as soon as I get out the camera! It seems like I always had that trouble even with the other kids. One of the kids will learn something really cool or say something amazing. But whenever I want to show someone else or get my child to repeat it in front of someone, they never do it! I was successful though this morning at capturing a little auditory memory game that we learned in therapy last week. It's quite simple. You put two familiar objects in front of your child. Then you get them to close their eyes and you quickly hide one of the objects. Then your child opens their eyes and you ask them "what's missing?" It took a few tries to get Ava to understand the concept of "missing". But now she wants to play the game over and over! Our therapist indicated to use only two objects for the first little while. Then, gradually add another object.

Here's the video. I attempted to add the captioning through the transcript option on YouTube. I apologize that the captioning is a bit out of time in the middle when I'm getting Ava to close her eyes, but then it eventually corrects itself. Enjoy!

And in case you were wondering what Ava's shirt says....."IT'S SO FUN TO BE ME!"

Troubleshooting the cochlear implant equipment

Ava's coil failed on Easter. We noticed a steady flashing orange light blinking on her processor at the rate of one blink per second. This usually means the coil fell off and is not attached to her head. Or, it can mean that the processor is on the wrong ear. However, the coil was on her head and the processor on the correct ear yet the orange light continued to flash. We knew it wasn't the battery because the processor would show a fast flashing orange light. But nope, this was the slow flash. My husband hooked up the listening headphones to the processor and could detect good quality sound. So we knew it wasn't the processor. We got out the remote to troubleshoot. The remote indicated that "coil is disconnected from the implant" and displayed this picture:

which means the coil is no longer picking up a signal from the implant. The remote instructed us to check both the coil and the coil cable. So, first, we took the cable off the other ear and attached it to the faulty coil. Still got the steady orange flashes. Then, we took the good coil off the other ear and placed it on the processor and presto, the flashing stopped. Therefore we determined that the coil was faulty and not the cable. We went to our kit to get out a replacement coil. We found replacement cables; but lo and behold there were no replacement coils to be had! I found that quite odd, as we were given backup replacements for all parts (except the processor itself) with the Nucleus Freedom kits. Apparently the Nucleus 5 kits do not contain backup coils or magnets, only extra cables. A new coil costs $195! I did a brief survey of some fellow parents and some kits contained backups and some did not. It seemed most of those in the US had backups of everything, including a backup processor. Fortunately, Ava's coils were still under the 1 year warranty. Because it was a holiday, I couldn't do anything about it till the next day, Monday. Thankfully, Ava is a bilateral user, so she could still hear with one ear. I just can't imagine the thought of her having to spend a whole day without ANY access to sound whatsoever. On the advice of Ava's audiologist, I called "Hear Always", which is a division of Cochlear Corporation, which helps with troubleshooting and equipment replacement. I spoke to a kind gentleman, who confirmed the troubleshooting steps with me over the phone. I also learned that if we swiped the coil over the back of the remote, the remote would indicate whether the coil was receiving a sound signal or not. So cool! He arranged for a replacement coil to be fedexed overnight and we received it Tuesday morning. It worked! I felt so proud at figuring it all out. There were shipping instructions to return the faulty coil, at Cochlear's expense. All in all, it was quite an easy process and the remote was very simple to use. We do not use the remote on a regular basis but it sure came in handy this time!

The Best Language Toy Ever

A crucial element to the success in using cochlear implants is receiving auditory verbal therapy. Auditory Verbal Therapy (AVT) teaches deaf children how to utilize what ever usable hearing they have to acquire speech and language. It teaches the children how to listen. Ava receives AVT once per week. What is the best way to teach a child how to listen? Why through fun and play!

While you are playing with your child, you can help her/him increase his language skills and you can have fun together at the same time. It is amazing how an an incredible amount of language can be drawn from the simplest toy. After all, children learn best when they are having fun. A toy that not only promotes language but also maintains your child's interest.

I have been wanting to blog about a really great toy that Ava plays with constantly. It so happens that I think it is probably one of the best (if not the best) toy to use for auditory verbal therapy for toddlers. The toy is the ubiquitous MR. POTATO HEAD. Below are my reasons why Mr. Potato Head is so fantastic:

*BODY parts - Ava learned the names of the common body parts this way. First she learned body parts receptively by pointing when asked "where's the eyes?" Now, when I ask, "what's this?" she can respond orally and name the correct part.


*COLOURS - Ava learned her colours from this toy.

*AUDITORY MEMORY - "Give me the shoes and the eyes"....or "get the red shoes and the orange nose"

*WHAT'S MISSING? - leave the nose off and ask your child "What's missing?" or you can be silly and put the parts in the wrong spot and ask "Do the eyes go here?"

*CHOICE - do you want the ears or the feet?

*LEARNING PREPOSITIONS - "put the ears in", "take it off", put the hat "on" his head, "lay the feet beside the arms", "his hat is behind him"

*LEARNING PRONOUNS - "give the eyes to me", "those are his shoes", "where are your ears"

*SAME AND DIFFERENT" - put on a red ear and and orange ear and ask "is this the same?"

*TURN TAKING

*FUN FACTOR - Ava first received her Potato Head at around 12 months. She is now 21 months and still plays with it every single day.

Ava's AV therapist recommended a really great book called "The New Language of Toys"by Sue Schwartz. It is all about how to use toys to stimulate your child's language skills. It recommends age appropriate toys to use for different age groups as well as how to make some homemade toys. It also has a guide and checklist to follow as to what language goals are reasonable for their age and development. I am constantly referring to the book for new language game ideas. It retails for about $22US.

I bought a used one on Amazon for much less than that.

Happy Playing!

Long Overdue!

It has been more than three months since I posted. Why? Well, other than being a super busy mom running a household of husband and six kids, I really did not have much new to report. I like to use this blog to update all as to Ava's progress. However, I had found that she had plateaued somewhat. Did this worry me? A little, since she was making huge language leaps at 4 to 8 months post activation. Then, after her auditory testing last December, which indicated how remarkably well she is doing, her progress slowed somewhat. But this is not because of her CI's or her deafness. It is normal toddler development. Like in the beginning of her CI activation, she spent most of her time learning to listen and taking in her environment, before producing any words. Toddlers go through this process from time to time, where development is more likely to come in bunches, with plateaus in between. But even during the plateaus, they are always sponging everything in! And the proof is when one day Ava would drop something on the floor and exclaim, "WHAT HAPPENED?" completely out of the blue. Or, "I want TV"..... little two to three words sentences......out of the blue. That kid never ceases to whip out little surprises. Or how she completely emptied her drawers and came out of her room having pulled on pants and a shirt all by herself. She now must decide what clothes she wears along with the shoes. She surprised us by singing the entire alphabet (some pronunciation correctly and some using approximations but the right intonation) as well as the part you sing at the end.."now I know my ABC's"....She loves to dance to music, knowing how to manipulate the CD player. And she loves it when we hide a wind-up noise making toy, and she has to find where it is by only listening to where it is coming from.

Ava also continues to have occasional temper tantrums. When she does this, she pulls her CI's off (along with huge clumps of hair due to the wigtape we use to keep the CI's on). We simply put her in her crib until she calms down, which is about a minute or two later. Then she is all happy and smiling. The tantrums occur about once a day and more so when she is tired. I guess she pulls of her CI's to try to spite us? But we leave them off until she calms down.

When Ava wakes up in the morning, she entertains herself in her crib while waiting for us to get her up by singing and talking to herself. The language is quite clear, even though she can't hear herself. Our AV therapist indicated that this is like when we get up in the middle of the night and make our way to the bathroom in the dark, even though we can't see anything, we automatically know where to go because our brains remember. Just like Ava can speak and sing with her CI's off, even though she can't hear herself. It really is quite amazing.

Ava also FINALLY received the compact rechargeable batteries for her N5's. It is much shorter than the regular length battery container. It looks great on her-you can hardly see that she is wearing anything from the front, other than the earhook. They sent me the wrong colour, hence why the bottom half is beige. I received the dark brown a short time later.

Winter Fun?.....and Ava's Progress

Winter is here in Toronto, much to Ava's chagrin. She is not thrilled with the snow, refuses to walk on the stuff and throws off her mittens in protest with a resounding NO! She also refuses to have anything to do with Santa; having brutally endured not one but two Santa photos. The first of which she would only participate if I was in the picture holding her and the second time she screamed her head off even as I held her. Funny thing is she would really admire Santa from a distance...pointing to him, smiling, saying "ta ta" and even watch older sister Lauren practically tackle the man with excitement.

Ava just completed both hearing testing as well as testing of auditory comprehension and expressive communication. On the hearing testing, she is hearing around the 20 to 25 decibel range with her CI's! This range covers pretty much all of the speech sounds. With respect to the auditory comprehension, she scored in the 97th percentile and equivalent to a one year 9 month old HEARING child. With respect to expressive communication, she scored again in the 97th percentile and equivalent to a one year eleven month old HEARING child. Ava has only heard sound for seven short months and is one year 5 months old. She has SURPASSED what the average hearing child of her age would be expected to score on these tests! This is proof that early intervention, an excellent implant team (thanks to Sick Kids hospital and Dr.Papsin), an experienced audi with superb mapping skills (thank you Susan Drukker) and an amazing auditory-verbal therapist (thank you Mila DeMelo) whom we follow her activities at home faithfully and God Himself = an incredible little girl who is excelling beyond belief.

Merry Christmas and Happy Holidays!

FINALLY! Ava has her new processors!

Ava picked up her new Nucleus 5 processors yesterday. They are very sleek and much thinner than the Freedoms. The reason Ava was able to get the upgrade was because she was implanted with the Nucleus 5 back in March as part of the study. Now that the N5 processors have been released, she was able to upgrade so that her internal implant now matches the external processor. Here are a few pictures to show the comparison of Freedom vs. Nucleus 5 processors:

In addition to being much smaller/thinner, the new processor has:

-improved water resistancy - IP44 and IP57 ratings

-auto-telecoil

-remote control - the screen on the Freedom processor which was used for programming and troubleshooting, etc has been replaced by a remote control which has a much larger screen and is also in colour - this is a fantastic feature as it also features a trouble shooting program and takes you through a step by step list of how to troubleshoot-the remote is also used to adjust volume and sensitivity levels- the remote is also used to test the processors to make sure they are working properly

-the coil headpiece is now detachable from its cable

-two batteries instead of three

However, the processor is only using disposable batteries for the time being as the rechargeable battery has not received FDA approval - it is unknown as to when the rechargeable battery will be approved - we have been using the rechargeables with the Freedoms and have never used the disposables - it was so much more convenient. The disposables apparently have a life of 38 hours. So for Ava, the batteries will last just over three days as she wears her processors about 10 hours/day.

For some people, this upgrade may cost thousands of dollars. Do I think it is worth it? Depends on what the cosmetic difference is worth to you. All in all, the technology of the N5 processor as a hearing device to my knowledge is probably not much different then that of the Freedom. If it were us, we probably wouldn't pay to upgrade at this time. Ava was doing remarkably well with her Freedoms, having met or exceeded her targets for 6 months post activation.

HAPPY TRICK OR TREATING!!!!