For the Love of Ava

Friendships

2012-01-08T14:10:00.005-05:00

Sara and Ava

Ava had her first school mate playdate. Little Sara's mother overheard Ava and Sara at school making plans to go to each other's houses for a playdate. How dang cute is that? They are only 3 years old! So, Sara's mom and I arranged to get the girls together for their first real playdate. It was a huge success. Afterall, these two monkeys attend pre-school together 3 days a week plus a pre-school program run by the City of Toronto on Monday afternoons. "Sara is my best friend!", Ava proclaimed after Sara had left. The best part of the playdate? Just listening to the two girls converse while playing with Ava's Petshop toys and not noticing any difference between their language skills. Mission Accomplished. We've already booked their next playdate. And coincidentally, Sara and Ava will be attending the same school for kindergarten next year. I've got a feeling this is the start of a long lasting, beautiful friendship.

Ten On Tuesday and Speech Sample

2011-11-01T14:16:00.007-04:00

1. Ava's left processor went kaputz a couple weeks ago. We were so worried that it was the internal device. The processor kept flashing a slow amber light. We swapped everything out to no avail. Even though the processor appeared to be working fine (we could hear sound through the listening headphones), problem was solved when Cochlear exchanged it for another processor. All is well now. In light of the recent recall on the N5 internal devices we were naturally very very concerned! Cochlear customer service was pretty impressive and attentive. I got a replacement shipped to me overnight.

2. I had Ava's first parent teacher interview at school. She is doing amazing! She is very helpful in getting other kids to follow through with teacher commands and prompts. She acknowledges all her peers as they come in to the class. She plays so nicely with everyone. She actively participates in sing alongs and circle time. She just loves her school and her teachers. She is so happy there. I was so pleased to learn that quite a few of her classmates will be going to to same school as Ava for kindergarten next year! This social interaction with her peers is so important.

3. Ava is consistently speaking in 6-7 word sentences now. So proud of her.

4. One of Ava's goals is to break her habit of referring to herself in the third person. For example she might say "Ava wants more juice please" instead of "I" . She is now using I, you, my, mine about 85% of the time.

5. There's a little girl in Ava's class that can read already! So I thought, why not Ava? I saved all of Lauren's sight words from kindergarten and got out a few two- letter words to start with. Ava is now reading the words "up, no, is, a, I, me". I also have her find those words in a book. Once mastered, I will add another 5 words. Why not give her a head start? She really enjoys learning the new words. At the same time she has started with phonics- learning the letter sounds. She has learned "S" and "M".

6. We have a big plastic calendar hanging on the wall. Every day we talk about the date, add the day's number and sing the days of the week. We talk about the day's weather and what we did "yesterday" and what day it will be "tomorrow".

7. Here's a speech sample. Ava is 3 years 4 months. She's had her CI's for 2 1/2 years. She is discussing the days of the week with her 6 year old sister Lauren.

8. I asked Ava's school for the lyrics of all the songs she is learning. At home we practice the songs to improve her articulation of them. She tends to rush through the songs sometimes and you can't always understand her words.

9. Amazing CI moment #326. I asked Ava's playdate in our basement playroom "where did Ava go?" . Ava, having overheard this, answers me from the upstairs bathroom which is off the laundry room "I'm right here Mom upstairs in the bathroom!" WOW.

10. I downloaded the Blogger app from my iPhone. I can now blog from my phone. The only thing I can't seem to do is post a video using the app. So I had to do that from my desktop. Pretty cool though.

Thankful!

2011-10-10T20:50:00.004-04:00

Today is our Thanksgiving here in Canada. There are many reasons to be thankful today. Here are my top reasons to be thankful. I am thankful for.....

1. Cochlear Implants - which allow my deaf child to hear and speak.

2. Hearing aids - which allow myself and my hard of hearing child to hear.

3. My husband, who is my best friend.

4. A roof over my head.

5. Food on the table.

6. Always having a job available should I need to go back to work. In fact I am working temporarily this month at my old job, which I love.

7. My children. They are my purpose.

8. Bonus time with my mother-in-law. She is 90 and survived a stroke. She is back in her own home and nearly fully recovered.

9. the friendships that my high functioning autistic son has made in highschool. It is my wish come true.

10. My CI and HA blog friends that I hope to someday meet in person (you know who you all are - I don't want to leave anyone out). We give each other such hope, inspiration and encouragement when we need it most.

HAPPY THANKSGIVING!

Keep the conversation going.

2011-09-26T21:01:00.004-04:00

We've spent the last two years teaching Ava to learn to listen and speak. She can talk about her feelings. She can listen to a story and is starting to understand and answer "why" questions. She can recall events that happened at school. She is beginning to understand the concept of yesterday, today and tomorrow. These are all prerequisites to having a conversation. You know, the back and forth talking between two people. Typically with a toddler, it can be difficult to have a real conversation where you and your child can go back and forth about one topic for more than a sentence or two. Up until now, many questions would require a simple yes or no or one word response. "Do you want milk or juice?" "Where's daddy?" "Did you have fun at school?" etc etc. Now, it is time to expand this to include why questions and to keep the conversation going for more than a sentence or two. I found it difficult at times with Ava as she would lose interest sometimes. However, Ava LOVES to play pretend games where she would get out her dollhouse figurines and will designate me to be the "mommy " and she would be the "daddy" or "sister" or whatever character she chooses. I found that when we engaged in this type of play, Ava could go on and on back and forth with conversation between these two pretend characters. To keep her interested, we made paper bag puppets together and then we would engage in our "conversations".....hi dog. hi cat. do you want to play with me? ok, what should we play? ummmm let's play chase. Great idea. ok i go first and you chase me. ok? ok, let's go. I'm tired now. Why are you tired? too much running. I'm hungry. What would you like? I want some crackers. Do you want crackers too? ok......

In addition to her 3 morning/week preschool, Ava has ballet classes on Saturday mornings and a preschool program run by the City on Monday afternoons. She sees her TOD weekly.

As for her TOD visits, we started doing the letter sounds and printing! So exciting! Last week we started with the letter "S". We learned a song about the "s" sound and pointing out words that start with the "s" sound. We practice printing the "s" everyday. Ava is also using a calendar everyday to learn the days of the week as well as the weather. We also go to the library every two weeks to sign out a ton of books. The books she enjoys now are getting more and more complex and advanced. We are so pleased by this. The work never ends. But she will be well prepared for junior kindergarten next year. I've been told for our deaf kiddos, it is beneficial to try to get them ahead, especially with vocabulary and language comprehension, so that their transition to mainstream school will be seamless.

Ten on Tuesday!

2011-08-30T22:29:00.009-04:00

1. Ava is starting school in a couple weeks! Oh, pardon me, as Ava would correct me, "I'm going to PRE school!" She is very excited and points out her school everytime we walk by "that's MY school"). She will be attending 3 mornings/week.

2. We have had such a good, enjoyable and fun summer. She spent a lot of time swimming. She has no fear. She swims the shallow end, deep end, dives for pool sticks...all by the age of 3 and nary a swimming lesson (other than by mom). Wow.

3. Ava is speaking so well! We couldn't be more pleased. She continues to show noticeable progress all summer. She is becoming more accurate with her tenses (using "ing" and "ed" endings). She frequently will repeat phrases she hears us say at random times - such as "what are you talking about?" (in the sarcastic context - a phrase I use with my teenage children).

4. The pre-school Ava is attending is Silver Creek Preschool. It serves children with all kinds of special needs together with typically developing children. They do use a total communication approach, which incorporates oral, sign and visual aids (for the non verbal children or those with communication disorders). I didn't choose the school because Ava is deaf. I chose it because it is also an excellent nursery school for typically developing neighbourhood children. There will be other kids with no issues who will be good language models for Ava. Ava's older sister Lauren also attended the school and had a wonderful fulfilling year doing all the regular pre-school stuff. They also provide speech therapy (if needed) and music therapy. The school will work with Ava's itinerant TOD in preparing a list of goals for her. Also, the school is literally a 3 minute walk from our home.

5. Ava will resume her weekly sessions with her TOD (Teacher of the Deaf) in September. The role of the TOD is to act as a link between Ava's school and her family. She will make sure all of Ava's needs are met at school and also will continue to monitor Ava's speech and language development. She will also continue to work with Ava on academic concepts thus giving Ava a head start for kindergarten next year.

6. Ava is finally in a bed and is sharing a room with her sister. The girls love being roommates. Ava also decided she wasn't going to wear pull-ups anymore at night. Pro: She has been accident free since. Con: she gets up every night around 3am to pee and will sometimes roam around (she is the heaviest walker and thumps around like an elephant) before she goes back to bed.

7. Ava has a Mapping next month. Looking forward to having her processors tweaked.

8. Ava's oldest sisters are leaving this weekend to move into their dorms at university. It's an emotional time for me. Try to imagine your kid leaving home and living somewhere else. Yeah they'll be back some weekends, yeah, they'll be home for the summer. But its not the same. They are living somewhere else. When its your firstborn, it is such a huge adjustment. At home, you know they're safe and snug in their own beds for the most part. You still have some control over their well being. That is all changing now. They have to make their own decisions as to safety and judgment in certain situations. I'm so excited for them, but inside, I'm mourning a loss.

9. Sometimes Ava likes to leave her CI's off for a while. Such as after swimming, she doesn't want them back right away and likes to play around deaf (and naked too lol). She loves exerting her independence!

10. Our life with Ava couldn't really be any more "normal". I continue to stress this because with her CI's, Ava is a hearing child. We are so grateful for her CI's and her ability to hear so well with them. I grew up with hearing loss. My honest to God opinion? Right now? It is no.big.deal. It's life. Our life. Life is what you make it. Don't look the other way. Don't look for what ifs or whys. Just live the life you are given and accept it. Strive to do all things possible to help your child maximize his or her potential and believe you, as his or her parent, ARE doing EVERYTHING possible. Then just ......be. Life truly is precious.

Just chilling and enjoying the summer!

2011-08-04T19:46:00.002-04:00

It's been a month since I last posted. Ava is enjoying her summer so much. She has done two weeks of half day summer day camp. No CI issues whatsoever. She would come home and eagerly recall the days' activities. She loved wearing a big girl backpack and would proudly march off to camp with her sister.

We visited Ava's AV therapist last month to check in. You may recall that Ava finished her AV therapy last December. However, we were having some concerns based on some new speech and language testing Ava had done. While we thought Ava was doing well up to that point, it was the testing that indicated she was not doing as well as we thought. In the end, we surmised that the testing simply indicated that there were some concepts she had not yet achieved, such as stating her last name. These are things we can simply teach her. Ava's AV therapist reassured us that Ava is still doing very, very well. Sometimes, you cannot get too caught up in "test results". To this day, Ava is progressing wonderfully. She has become very inquisitive, constantly asking me "what are you doing?" She is very VERY excitable and oh so full of zest and life.

Tomorrow we are headed for the annual summer Voice Camp weekend for kids who are deaf/hard of hearing. So excited for the girls to spend a weekend with other kids their age with hearing aids and cochlear implants. It is such an interesting mix of families. Some families are completely oral, such as ours. And some families use sign language, mainly those families where the parents are deaf and chose to have their deaf children implanted and learn to listen and speak. The weekend is full of activities for the kids and workshops for the parents. I look forward to meeting the families we met the last couple years and also to making new friends as well. I will be sure to post pictures.

Happy 3rd Birthday Ava!

2011-06-30T21:35:00.037-04:00

Ava turned 3 today! We had a small celebration at home with most of her brothers and sisters since I unfortunately had to get strep throat of all days! I had to cancel Ava's little party we were going to have with her friends from the neighbourhood. However, we are having a family BBQ for Ava's out of town grandparents, aunts, uncles, cousins on Sunday so at least we can celebrate properly then.

THEN:

NOW: (she scraped her chin and lip yesterday :(

Ava's Sibs (almost all of them!)

Clarissa - almost 18!

Lauren - 6 1/2

Anthony - 16 on Monday

Adrian - 14 next month

Good Night! zzzzzzzzz

Ten on Tuesday

2011-06-21T07:30:00.001-04:00

1. Ava is toilet trained. Yay! Still wears pull-ups at night. That's okay with me!

2. Since Ava is toilet trained, I was able to sign her up for some good ole summer camp. YES! I have her in two weeks of half-day camps at community centres only 3 minutes away. They are called "Half-Pints" and "Tiny Tots" . How cute is that. Her older sister is also attending camp at the same location. It will be a great dry run to prepare for pre-school in the fall. Not too worried about CI issues. I will use a critter clip and send some extra wigtape for the camp counsellors. And sprinklers for water days? Bring it on! We've got Nucleus 5's baby!

3. Speaking of wig tape, Phonak has invented a clever product called "Stick 'n Stay". They are individual packages consisting of two pieces of double sided wig tape in a perfect contour shape. This is great for travelling. I now stick a couple packs in my purse instead of carrying scissors and a wigtape roll around. They work pretty well. They cost more than a roll of wigtape but it's still not that expensive if you only use it when you're out on the road (our hearing dispenser charged us $12 for a pack of 30 pairs) And of course but you can't beat the convenience.

4. Ava is a complete little stinker. She now REFUSES to wear her aloksak bag and swim cap for the pool. GRRRRR! Guess we'll just have to wait it out until she passes that "I want to be in control of everything" stage. I had major waterpark plans for this summer and she is ruining them. GRRRRR!

5. Ava has decided it is quite amusing to scream at the top of her lungs within close earshot. Not funny unless you're 5 months old and discovering your voice. Needless to say she has "time-out's" quite freqently these days.

6. Getting dressed continues to be a battle. I've tried everything. She simply will not wear anything you even look at, much less choose for her out of an array of 3 outfits. Sorry, sweetie but you can't wear Dora pyjama bottoms to church.

7. Ava LOVES to "read". She spends a lot of time looking at books on her own. She reads to herself having memorized her books. She will spend an hour sometimes doing this.

8. The other day I asked Ava: What do we use to see? She said, "eyes". What do we use to touch? "fingers" What do we use to taste? "mouth" What do we use to hear? She caught me completely off guard when she replied, "CI's". She's a smarty pants that one.

9. Growing up I used to wonder why I was the only one in my family who wore hearing aids. How grateful I am that I do have a hearing loss. I notice Ava looking at my hearing aids all the time. No doubt because of this Ava feels that wearing hearing devices are natural and normal because mommy and older sister Lauren wear them too. It kinda feels like this was God's plan for me, so I can better advocate and be a role model for my daughters. We are in it together.

10. Another observation - Ava has to have both CI's on all - the - time. Sometimes, for example, I'll put just one CI back on after the bath or if I can't right at that instant refresh Ava's wigtape on a CI that has fallen off, she goes nuts. She demands both CI's every time.

Worried....

2011-06-10T21:07:00.005-04:00

Up until now, almost all of my posts have been fairly positive. Ava has been doing very well with her CI's, but perhaps not as well as we thought. Ever since Ava was discharged from AVT (and actually before she was discharged), I was a tad unconvinced that Ava could talk as well as her hearing peers. The testing (PLS-4) clearly indicated that her expressive language was a few months ahead of her hearing peers. But testing or not, I had reservations. I have 5 children. I know that children develop at different rates. I also know from experience that Ava just simply was not talking as well as her peers, despite the testing indicating that she was. For the last 6 months, Ava has been working with her Teacher of the Deaf (TOD); basically working on material from more of an educational perspective as well as incorporating the goals suggested by her AV therapist. Her TOD just administered a test called the Cottage Acquisition Scales for Listening, Language & Speech (CASLLS). With this test, Ava scored more in the range of a two year old (which makes sense since she has only heard sound for two years) rather than a three year old (her 3rd birthday is in a couple weeks). I was so upset, shocked and disheartened that I couldn't even blog about it. All this time I've been tooting the "my deaf kid has surpassed her hearing peers" horn only to learn that that may not be the case at all. Why did she score so high on one test and not do so well on the other? What's worse is the services provided by the school board for our TOD end at the end of June (just like school does) and break for the summer. I immediately called Ava's AV therapist who agreed to see us for another assessment on June 24 and we may resume AVT for the summer. While there is still time for Ava to catch up before she starts kindergarten next year, I feel really, really discouraged. All I want is for Ava to be caught up. We certainly have our work cut out for us for the next year and I'm so thankful I don't have to work so I can be home with her to work with her one on one. She will also get speech services at her preschool this fall. As for that CASLLS test, I'm also a bit skeptical. Some of the questions it posed, we hadn't yet taught certain concepts to Ava; such as "child states first and last name". I hadn't taught her what her last name was yet. Another item "child is able to tell simple stories". Ava can go into a diatribe about a Dora episode she watched quoting lines she hears from the show but can a nearly three year old tell simple stories - as in stories with a beginning, middle and end? Does reciting nursery rhymes count? (she has a few under her belt completely memorized). She can open up the "Green Eggs and Ham" book and has almost every page memorized. She regularly speaks in 6-8 word sentences. She is progressing everyday. We see a difference in her speech every.single.day. I am so anxious to see Ava's AV therapist and hear what she has to say in all this. I will be sure to keep you all posted.

HAPPY 2ND HEARING BIRTHDAY, AVA!

2011-04-28T14:28:00.012-04:00

Ava's hearing is two years old today. We are as happy as ever with her progress and the beautiful "hearing" girl she has become. There is no doubt that she LOVES her cochlear implants and she LOVES to hear, especially music. Here is a short five minute video montage that captures her journey in a nutshell~from birth to the present. Thank you for sharing this special moment with us,

Amy, Markus, Ava and family

Ten on Tuesday (Thursday)

2011-04-15T20:21:00.021-04:00

I love the "Ten on Tuesday" posts written by my other CI mom friends such as this and this and this. I love how you don't have to have a particular topic to write about, but rather a general diary type blog entry about a bunch of things all in one entry. So, even though it is THURSDAY and it is supposed to be Ten on TUESDAY (not Wednesday, right, Aiden's mom?), here is my list:

1. Cochlear finally came out with snazzy new processor covers for the N5's to fit the processor with the compact rechargeable battery.

They are soooo pretty and soooo cool!

2. Of course, big sister Lauren needed something pink for her hearing aids, so she got new pink sparkly molds:

3. Every spring and fall, we change Ava's microphone protectors. When the protectors get dirty and dusty, the sound quality can become distorted, so it is important to change out the protectors every 4 months or so. Cochlear finally came up with a much improved system to change the protectors (thank you Cochlear!). Before, it was next to impossible to change the protectors. They are teeny tiny little round discs the size of a grain of black cracked pepper and are next to impossible to hold let alone manipulate into the microscopic microphone holders and oh so easy to lose those little buggers (and impossible to find if you drop one on the floor!) It was also next to impossible to remove the protectors from the processors as well because you had this little tool with a looped wire end which was too wide to fit into the tiny hole where the protectors are sitting in. Now, Cochlear has improved the removal tool so that it is a cinch to pop the old protectors out. And as for inserting the new protectors, you simply slide a patch looped over the ear hook and line the protectors up over the holes and pop them in. Soooooo easy!

4. My oldest daughter Clarissa and stepdaughter Catherine are graduating from high school in June. They are in the midst of deciding which university to attend in the fall. What am I going to do without my built in babysitters? I mean the reason I have a social life is because of my two oldest girls. I can literally just walk out the door and they know the whole routine of the household. I am going to be lost without them (and all their friends who babysit for me when my daughters cannot).

5. Clarissa and I went prom dress shopping. It is the quintessential mother-daughter experience. I will never forget it. You look so beautiful and so grown up. I shed silent but proud tears. I am so proud of you sweetie.

6. My youngest son Adrian is graduating from grade 8. He also is celebrating his confirmation next month. He is growing into a handsome and smart young man.

7. Ava LOVES to dance. She constantly asks to listen to MUSIC. 8. Ava visited her pre-school yesterday. I cannot believe she will be going to SCHOOL. She starts in September and will be attending 3 mornings per week.

9. Potty Training! Yes, it's actually happening. WOOOOOHOOOO. We first tried in January. Too soon. We tried again in March. No luck. We started again this week and we are definitely getting somewhere. Yay Ava! What do I do? Just have her put on underwear and keep the potty close by. I don't ask her a million times if she has to go pee. I just let her take the initiative. I figure she needs to learn what it feels like to be wet and learn how to control her bodily functions. This time she indicated whenever she has to pee and we would put her on the potty and she would go. No poops in the potty yet, she still wants her diaper for those. But today she did tell me her poo-poo was coming and she started to go in her underwear but she didn't finish it off in the potty (wanted her diaper back on for that). Baby steps.....baby steps. At least she demands her underwear everyday now. I found this Sesame Street rewards sticker chart. There are 5 columns for which she can earn a sticker, such as: indicating she has to "go", sitting on the potty, "using" the potty, flushing the toilet and washing her hands. Oh, it also helps that I use marshmallows as an ~~bribe~~ incentive.

10. Clarissa got her driver's license. What a huge help that is. She can run errands and pick up siblings. I am loving it! So many changes this year. Hold onto your little ones. They will be driving and graduating before you know it!

Our two minutes of fame!

2011-04-01T21:04:00.012-04:00

Our family was featured on our local cable tv show "Where Parents Talk". At first I thought the feature would be centered around Ava's cochlear implants, however, the network was more impressed with our blended family of seven kids thus the clip featured our family. They did touch briefly on Ava's implants, but not as much as I hoped for. To view the clip: click here

March Break Fun!

2011-03-17T13:52:00.010-04:00

We spent a couple days at the "Americana" resort waterpark in Niagara Falls (Ontario). Just want to remind everyone that yes, it is possible to waterproof the cochlear implant so that your child can swim AND hear! Here are three methods one could use to waterproof the CI.

1. The method I use: Aloksak bag and swim cap. For more details, click here.

2. Foodsaver method: click here .

3. Balloon method: click here .

Ava has the Nucleus 5 CI's from Cochlear Corporation. The Nucleus 5 is water and splash resistant. I get a lot of comfort from this, which gave me the confidence to allow Ava to swim with the CI (using the Aloksak bag). The predecessor Freedoms are also water resistant. Cochlear Corporation's various websites show the N5 processors on wet children splashing about (without the use of any of the waterproofing inventions mentioned above). However, here in Canada, we don't receive "back-up" processors like our American friends do. So, I'm not willing to chance having Ava wear her CI's around the water without using the Aloksak.

A Star is Born!

2011-03-12T21:02:00.007-05:00

I met, through our cochlear implant on-line parent group, a super dad from Florida who told me how much his toddler daughter loves singing and hearing her voice with a microphone and amp. He sent me a video of his daughter belting out Twinkle Twinkle Little Star and I was amazed at how proficient she was with the microphone and how she sang with so much feeling. I have since been eager to get a microphone and amp set up in the house as I can see how it could be used as a means to improve Ava's articulation. My husband is a musician and has this equipment, but he uses it quite frequently for his gigs and his equipment is so heavy and difficult to move in and out of the house. Well today, Ava and sister Lauren's awesome Godmother Linda, picked up this fantastic amp and microphone set from Pottery Barn (she couldn't resist the deal - it was marked down as a doorcrasher special from $200 to $20!). It is the real deal, not a children's plastic toy type. You can even hook up your iPod to it to play sing-a-long music. The girls went nuts, especially Ava. I highly recommend getting this for your CI kids, especially little ones learning to talk. Kids love to hear their own voices and love to perform. And of course, the obvious benefits are it's a fun way to develop and enhance language! Here's a sample of Ava's rendition of "Wheels on the Bus". We made her sit down as she was jumping and dancing around so much she kept yanking the microphone cable out of the amp. Your next American Idol maybe?

Making Muffins

2011-02-21T21:42:00.008-05:00

I'm enjoying my time at home with Ava very much since all her older siblings are in full time school. It gives us oh so much one on one time together...such precious time. Especially precious is this time because she starts preschool this September. While I'm very excited for her to start school, I also am dreading it. She is my baby and I would like to keep her home with me forever. She is our seventh child of this blended family so I know all to well just how quickly they grow up once they start school. Ava and I do everything together. Unloading the dishwasher, grocery shopping and sorting laundry is actually quite fun with my little sidekick. She loves to sort things into categories be it cutlery and dishware, daddy's socks v. Lauren's jammies. We are starting to work on sorting food; fruits v. vegetables.

Ava and I had our first ever baking session together. She learned about mixing, beating, pouring, stirring, teaspoons and measuring cups. She had so much fun!

Putting in the muffin cups

Adding the mix

Mix it up

Spooning the batter

Chocolate chips and blueberries

Proudly carrying her creation to the oven!

Turning on the light to watch!

Blowing to cool them down

Devouring her muffin!

Our little catholic girl has taught herself to sign the cross at grace. We love it!

Going to "School"

2011-01-21T21:01:00.009-05:00

An important step in a toddler's development is for them to spend time with their peers in a social setting. I feel it is especially important for a child with cochlear implants to do this, so they can pick up on social cues and subtle nuances in language from their peers. Ava is in a home full of much older siblings and us, her parents. While she is drawing phenomenal amount of language from us all, I believe it is equally important in her overall language development, to spend time with other 2 year olds.

I am going to be honest here. Part of me has a fear that Ava may experience rejection by her peers. I grew up with hearing aids. I did not experience rejection myself (except for one smart-assed boy in grade 7 who made a couple smart-assed comments about my hearing aid, which I just let roll off, although it did sting at the time). Ava's older sister Lauren, who is 6, wears hearing aids. So far, knock on wood, she hasn't had any problem with her peers. Lauren's teacher of the deaf played a role in this, I'm sure. She had the clever idea to have Lauren make a book complete with Lauren's own illustrations of all the parts and functions of her hearing aids and Lauren read this to her class and to the principal. Right from the get-go, Lauren's peers were made aware of Lauren's hearing aids, why she got a sound-field and then an FM system and how they need to face Lauren when they talk to her. She has a ton of friends and frankly, they don't even think about her hearing aids or remember that she has them. I'm hoping that this will be the same with Ava too. But, who has really seen implants before? Don't get me wrong. I am eternally grateful for the technology. But I feel I have to do everything in my power so that Ava gets off to a good start socially, with her peers. I want the world to see just what a lovely vivacious full of energy and zest little girl Ava is. And the sooner, the better. In a group setting, Ava can learn things like turn-taking, sharing, empathy and conflict resolution. Last September, I enrolled Ava in a mom/tot group. The group meets for two hours every Wednesday in a school-like setting and follows a school-like routine. Ava LOVES it. I mean absolutely its her favourite place in the world to go to.

First, it's FREE PLAY at the many different stations, such as painting, colouring, puzzles, dress-up, toys, play-dough, potato head, books, etc.

Then, we do a craft. Here, we decorated our own gingerbread men and of course devoured them.

Then, its SNACK TIME!

Then we go upstairs to the big GYM to play with bouncy balls and "What Time is it Mr. Wolf?"

And then, we go back downstairs to pick out an INSTRUMENT for our marching band

Next, we have CIRCLE TIME. We sing songs and have a story.

Then we line up and wait for our name to be called. "Ava be nimble, Ava be quick, Ava jump over the candle stick."

Of course, our day would not be complete without a gazillion HUGS from "teacher" Jessica

Suitable for all ages

2010-12-20T18:04:00.003-05:00

Ava really, I mean REALLY loves Dora the Explorer. I have to admit, we are a big tv family. Not that we watch a ton of it, in fact it is rarely on at all during the morning or afternoon. But with a house of four teenagers, and a movie buff hubby, we pretty much have all the cable channels possible. One channel in particular, has Dora on demand. Now I don't agree with toddlers watching a lot of tv. I think under an hour daily is more than enough. However, I can't believe the amount of language Ava is acquiring from watching Dora. She knows the names of all the characters (Backpack is "backcack") and most of the songs ("Do Do Do Do Dora" ). She cannot get enough of Dora. She asks and asks all day long every day to watch it. Before each episode, there is a short announcement in which one hears "this program is suitable for all ages". When I switched the tv on to Dora this morning, Ava turned to me and said "suitable for all ages!" After I picked my jaw up off the floor I thought that maybe she is watching it a bit too much :-)

AVA HAS GRADUATED!

2010-11-30T13:27:00.014-05:00

The day has come. Ava graduated from auditory verbal therapy today! Really, she is finished with therapy. See her beaming therapist Mila de Melo in the photo, proudly holding Ava's Certificate of Completion. What this means is Ava has achieved the ultimate goal of auditory verbal therapy, which is to catch up fully to a hearing child of Ava's age in expressive language (speaking) and receptive language (understanding speech). In fact, Ava has surpassed those goals. Ava's expressive language is in the 88th percentile. Her receptive language is in the 97th percentile. Overall her language is in the 91st percentile. What does this mean? Today Ava is 2 years, 5 months old; she's almost 2 1/2. Yet, Ava speaks like a hearing child that is 2 years 11 months old. She understands language like the average 3 1/2 year old hearing child does. Overall, her language is that of a 3 year 1 month old hearing child. And what is even more astounding is Ava has only heard sound for 1 year and 7 months - she didn't begin to hear until her cochlear implants were activated when she was nearly 10 months old. It is an understatement to say how proud I am of her! I am so happy and grateful for our blessings. All our hard work has paid off and the reward is so huge. There are so many people I have mentioned in past posts who were instrumental in guiding us in Ava's journey. However for this post, I dedicate to Ava's loving auditory-verbal therapist ("Auntie") Mila de Melo. Mila, you gave us the tools to help Ava learn to listen and talk and she does this beautifully. We are blown away and Ava's achievements are beyond what we ever expected and hoped for. Thank you Mila, from the bottom of my heart. We will never forget you.

Where do we go from here?

The wonderful thing about Ava's graduation is now we can just let her grow and develop as any hearing child would. She will continue to learn and acquire language naturally. Our school board provides the services of a Teacher of the Deaf to monitor Ava during the preschool years. The teacher will prepare an Individual Education Plan for Ava once she starts preschool, to make sure Ava will have all the supports she needs to be successful in school. I will, of course, continue with this blog, to document Ava's development from a toddler to school age child and so forth, along with the challenges yet to come. My attitude? Bring it on! We are as ready as ever.

Mommy, Daddy and our angel, Ava Rose

Loving Music!

2010-11-05T15:02:00.006-04:00

I read somewhere that CI recipients may have some trouble appreciating music. Clearly with Ava this is not the case. She loves music and she loves dancing. Here are two short videos. In the first video, Ava is about 21 months old and has been hearing for just under a year. The second video was taken at her older sister's class Hallowe'en dance this year. She is almost 2 1/2 and hearing for 1 1/2 years. The video is really dark but about 10 or so seconds into the video you will see her older sister (in witch costume) enter the gym and hug a little dark figure in a giraffe costume (Ava) dancing up and down.

Fun With Nursery Rhymes!

2010-09-10T15:34:00.009-04:00

We are working on new nursery rhymes with Ava. Since mastering the finger plays "itsy-bitsy spider" and "round and round the garden" a while back, we wanted to introduce new ones to her. Ava's therapist showed me some really cool little booklets she had made with the nursery rhymes so I came home and made my own version. I found the pictures on the internet; some were already with colour and some I had to colour myself. I bought some foam sheets :

and yarn, armed myelf with scissors and a glue stick and made 5 little booklets (Humpty Dumpty, Little Miss Muffet, Jack and Jill, Hickory Dickory Dock and Hey Diddle Diddle). Here is an example of Humpty, Dumpty:

I used yarn to hold the pages together like a booklet. Then it will be easier to take the booklet apart for another game once Ava masters the rhyme - which will be to put the pictures in the correct sequential order.

I also printed off the complete nursery rhyme on one page:

Another idea is to put the pictures on popsicle sticks - as we have for "One Two Buckle My Shoe":

I will try to capture Ava's progress with these nursery rhymes on video.

Have fun!

Counting Fish

2010-09-07T15:02:00.003-04:00

Ava is mastering her counting!

End of summer road trip

2010-09-01T20:38:00.011-04:00

Every summer we visit my parents in beautiful Miller Lake, Ontario, which is just over three hours northwest of Toronto in the Bruce Peninsula. Ok, I know some of you other CI moms are probably killing yourselves laughing at my declaration that 3 hours constitutes a "road trip" when a real road trip should be 5-6 hours minimum. But trust me when I say that anything more than one hour in the car with Ava is a road trip. Ava hates road trips. I think I am partly to blame, because our van has a DVD player and Ava demands to have Elmo playing whenever the car starts. But sometimes I just want Ava to look out the window at um other cars, trees, windmills, signs, cemetaries, empty fields, cows grazing, cows grazing, more cows grazing (ok the drive to my parents is really boring), anything but Elmo. But one can only hear a constant repetition of:

"I want ElmoIwantElmoIwantElmoIwantElmowantElmowantElmowantElmo?wantElmoWANT ELMO ELMO ELMO ELMO PLEASE MORE ELMO MORE ELMO PLEASE!!!!! in increasing crescendo" for so long. So, I end up giving in.

While the drive may be boring, once you get there, it is truly breathtaking. My dad took us all for a hike on the Bruce Trail......

Ava loved being in the backcarrier because she had views like this......

and this......

looking in the caves for bears......

of course the hike wore her out......

We also visited the beach which is fantastic because it is shallow for such a long way out ......

and jump over the waves......

Ava was fascinated with Grandma's mailbox ...."its emtee"

no summer is complete without skipping stones.....

and chipmunks to feed......(I couldn't get a picture of Ava feeding them - she either ate the peanuts or scared the critters away)

Looking forward to our next visit at Thanksgiving!!!!

Voice Camp 2010

2010-08-19T14:23:00.014-04:00

Last weekend we had an AWESOME weekend at Voice camp! VOICE is an organization here in Canada which offers support to parents with deaf and hard of hearing kids. Voice's mission is to ensure that all hearing impaired children have the right to develop their ability to listen and speak and have access to services which will enable them to listen and speak. Every year Voice hosts an annual weekend camp for families with deaf/hard of hearing children. It is SO MUCH FUN! As an adult who grew up with a hearing loss, I know this camp is SO IMPORTANT for my children Lauren, who wears hearing aids and Ava, who has the cochlear implants, to be around other children just like them. When I was growing up, there was nobody else in my school who wore a hearing aid and there were many times that I wished I knew someone else my age who wore a hearing aid just like me. MY perception was that I didn't feel "normal" because there were no other kids who had hearing loss and wore a hearing aid in my town. I still had a very HAPPY childhood and did EVERYTHING the other kids did and had lots of FRIENDS. But that part about not feeling "normal" stuck with me throughout my childhood and know that I if had the company of just one other kid like me, that would have made all the difference. However, that being said, those were MY feelings. My children may or may not ever feel that way and I hope that they don't. But attending VOICE camp is fantastic for Lauren and Ava as they are surrounded by tons of kids just - like - them. The feeling is incredible.

What was especially exciting was this year I got to meet Amelia's daddy and his beautiful daughter Amelia.

It was Amelia's daddy's blog that inspired me to start my own blog and gave me hope when Ava was diagnosed.

Also at Voice camp we met Chris Loewen. Chris is a young man who received a cochlear implant when he was 12. He entertained us all with his amazing magic show. Chris gave an excellent talk to the parents about what it was like growing up with a cochlear implant. His mother was a very strong advocate for him and was determined that he learn to listen and speak no matter what the professionals said. He has excellent speech! He was an inspiration for us all! Thank you Chris!

Of course my wonderful talented children's musician husband Markus entertained the kids around the camp fire:

We can't wait until voice camp 2011! See you all next year!

A Close Call

2010-08-07T22:36:00.007-04:00

Ava and I were hit by a car on our bike yesterday. It is still hard to even write those words...hit.by.a.car. Miraculously, we walked away with bumps, bruises and scrapes. The bike is a write-off. But we are alive and we were wearing our helmets. I am a very cautious person but all the caution in the world does not prevent the stupidity of some drivers. My advice is to always make eye contact with drivers and ensure that they see you. Even if you have right of way, even if your light is green and even though you are in the crosswalk, you need to make eye contact with the driver BEFORE you proceed. As we crashed to the ground my immediate thought was that no way was God going to take Ava from me after giving her the gift of hearing and all that we've been through. She didn't even cry. She was stunned. But thankfully, she was o.k. I noticed a welt on her forehead. No doubt from the helmet which saved her life I'm sure. There has been a lot of discussion on CIcircle (which is a discussion forum on the web for parents of children with cochlear implants) about bike helmets and how some parents have problems buying the right helmet to fit properly over the coils. Ava's helmet is a Bell helmet we bought at Walmart. We also used a Hanna Andersson pilot cap to wear under the helmet to help keep the coils in place. They look like this:

Ava's AV therapist informed me about a cool website which sells decorative accessories for hearing aids and cochlear implants. They are called Tube Riders and are sold by http://www.otocool.com/. I purchased 3 pairs - pink flowers, blue flowers and pink butterflies. They have really cool sport themed and animal tube riders for boys. Ava's older sister Lauren wears hearing aids so she was thrilled to wear the Tube Riders also. The tube riders have a small little rubber ring attached to them which you simply slip on the ear hook of the processor or the tubing of the hearing aid. Here are the girls proudly showing off their new accessories!

Feeling oh so good to be alive! And, always always always wear your bike helmet!

"WordFUL" Wednesday

2010-08-04T21:41:00.014-04:00

Just a quick post to post a couple videos of Ava singing and talking. As I've said previously, Ava is very difficult to film. She is constantly on the go and never seems to want to perform for the camera. After bribing her with blueberries, we finally were able to post two videos. The first video is of Ava singing "Twinkle Twinkle" . She actually can sing it much more clearly than in the video but it's the best I could get from her. The other video is of Ava simply talking about whether she wants one cookie or two cookies. In that video she is utilizing a couple things she is working on in AV therapy. One is giving direction where she in turn asks her sister and father if they want a cookie and also utilizing the plural for cookies vs. cookie. Soooo exciting to see her applying what she learns in therapy at home! Her speech isn't always clear at times. But that is to be expected for a two year old.

I have spent a lot of time trying to attach pretty flowers to Ava's coils. I got some ideas from other moms on how to sew snaps around the coils but it is quite difficult to do it with the N5 coils. I also don't want to sew something on only to have to remove it later and then sew it on again. I found these pretty flower stickers at the craft store. They stick fairly well and stay put for days. Even when I remove them they will still stick after a second or third time.

Happy 2nd Birthday Ava!

2010-06-30T22:26:00.004-04:00

Happy 2nd Birthday Ava!

Ava's big family party will be on Sunday so I will post birthday photos then. In the meantime, Ava just completed her second PLS-4 testing. She is still performing above age level in both auditory comprehension and expressive communication. In fact, because of this, Ava technically would be discharged from auditory verbal therapy. However her therapist felt that because Ava is still so young she would benefit from another six months of AVT. I can't imagine Ava not having the AVT and despite how well she is doing I still don't feel ready for her to give it up yet. So I'm really glad that we are continuing with the weekly AVT sessions until January when she will graduate! (that will make 3 graduations for us - Ava's from AVT, my son's grade 8 and my daughter's grade 12). Ava also recently had soundbooth testing and is hearing at 20 db! She could detect whisper at 10db! I was so amazed and overjoyed at this because I could not detect many of the sounds in the booth (I wear hearing aids) and Ava responded really well to them. So proud of you Ava - you can hear better than mommy and you are profoundly deaf. Still can't get over how AMAZING CI's ARE. THANK YOU GOD!

Swimming with CI's!

2010-06-01T13:24:00.010-04:00

Ava absolutley LOVES swimming in her pool. There was no way I was going to allow her to swim without being able to hear anything. I want her to participate in everything fully that a hearing child can. Especially in an activity that she enjoys so much! We did a little research and got some great ideas from other CI parents. We have her wear one processor in a special waterproof bag worn under her swim cap. The bag is from aLoksak - it is certified leakproof and airtight bag tested by the US navy. It is waterproof to a depth of 200 feet. Just follow the steps below:

1. the processor must have the rechargeable battery attached - the disposable batteries will not work because they need air to work

2. tighten the magnet on the headpiece as far as it can go - the magnet has to be strong enough to stay on the scalp while inside the bag

3. put the processor inside aLoksak waterproof bag - size 5" x 4" - we order this on-line http://www.loksak.com/ - a 3 pack costs about $7 plus shipping

4. place sealed bag on child's head with the magnet properly positioned on her head and put a headband over the head and bag to help hold it in place

5. put the swimcap on - Ava's is a lycra/spandex cap we ordered from amazon. we tried a latex/silicone cap last year and it was too hard to hold the bag in place and stretch a latex cap over top of it without knocking the magnet off. Remember, what keeps the CI dry is the aLoksak bag, not the swim cap.

Just remember to check that there is a good seal on the bag before your child jumps in. I personally checked the bags following the instructions that came with the bags before I used them. Also remember to return the magnet to its original state after swimming or your child may develop a nasty sore on her scalp!

Here's a video that I am so proud of which shows Ava HEARING and SWIMMING! (Don't worry - her dad is close by)

HAPPY HEARING BIRTHDAY AVA!!!!

2010-04-28T15:58:00.005-04:00

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

2010-04-23T09:55:00.015-04:00

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

2010-04-08T14:23:00.006-04:00

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

2010-03-31T10:18:00.012-04:00

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!

2010-03-23T13:03:00.014-04:00

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

2009-12-17T15:11:00.005-05:00

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!

2009-10-31T13:01:00.016-04:00

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!!!!

A Sunny Farm Day, Language Explosion and Walking!

2009-10-18T20:06:00.010-04:00

A Sunny Farm Day

Today we took the girls to Downy's Farm during its annual pumpkin festival. I took my older children there every year when they were small. The farm is fantastic. They have a giant corn maze, huge pumpkin patch, petting zoo, farm animals, hay rides, fresh pies, haunted house, make your own scarecrows, to name a few things. Can you imagine Ava's surprise at meeting the farm animals up close for the first time! She was awestruck and speechless. It was hilarious. She met two cows, sheep, goats and geese.

Explosion

Ava's implants have been activated for nearly 6 months. Not only has Ava started walking this month, but there has been an explosion in her expressive language and receptive language. Month by month she has added a word or two to her vocabulary. This month, not only has she amassed another 8-10 words, she also can speak those new words much more clearly. She has also put two words together for the first time "don't touch" (but does not say this clearly) and she wags her arm and shakes her head no when she says it. Today she said "sock".....(pronounced as "saw") and she said this with the "s" sound. I was so shocked! I understood that many hearing children don't use the "s" until they are nearly 3 years old. I could almost swear I heard the "ck" sound at the end one time but it was pretty darn close. Her receptive language has really taken off too......she seems to understand everything....."go get the ball" , "do you want a book?", "give the cow to mommy", "kiss the baby", "gimmee five", "where's the ______ . Her favourite book is "Brown Bear" by Bill Martin Jr. She wants us to read this book over and over and over! At the end of that book, there is a compilation of all the animals in the book on one page. Tonight, when I asked her "where's the white dog", she pointed to it as well as correctly pointing to every single animal on that page. There is one other book she really enjoys and that is "Where's Spot" by Eric Hill. She doesn't have the patience for any other books yet except a couple counting books (one cat, two babies, three dogs, etc).

At the same time, we have noticed a change in her personality. Let's just say she is well on her way to entering the "terrible twos". She is starting to throw little tantrums if I have to take something away from her or if she doesn't get what she wants when she wants. And she is into EVERYTHING. She loves emptying and dumping things....her clothes out of her drawers, the pots and pans, the pantry. She is like that cartoon character-the tasmanian devil - causing a whirling mess everywhere she goes. So I allow her one cupboard in the kitchen that she is allowed to rummage in. She enjoys singing and doing the actions to the "head and shoulders, knees and toes" song.

In comparison to my 4 older hearing children, I can see how Ava is making huge strides in all aspects of her development. Being a deaf child with cochlear implants has not in any shape or form limited Ava's development or potential. She really is just a regular kid but special in her own lovable ways. Who could ask for anything more than that?

Unexpected Surprise!

2009-09-28T20:04:00.007-04:00

AVA SAYS "APPLE"!!!!!!!!

Please let me tell you the story of our unexpected surprise at about 5:30pm tonight. I was cooking dinner. As usual, Ava was impatient because by 5pm she is a starving green eyed monster who MUST EAT at 5pm (like her daddy lol!) Well, as usual, dinner is not ready at 5pm, so poor little Ava has to WAIT and wait and wait......So, she starts to whine a little. The pasta is boiling away. I decide to pick up my hungry child and bounce her on my hip while I stir the pasta. I move over to the kitchen window and stare outside, watching the leaves fall from the trees and thinking how autumn has arrived and we should close the pool soon. And out of nowhere, without warning, Ava leans over from my hip, points to the apple on the window sill and says "a-pple" just. like.that. "a-pple". As clear as it could ever be. As clear as if I had said it. Two concise clear syllables; pronouncing each vowel and consonant "a-pple" just. like. that. I pause and just stare.....totally disbeliving....what.I.just.heard. I scream for my husband...."DID YOU HEAR THAT? SHE SAID APPLE!!!!!" Ava has never, ever said apple. Ava has never even had a word approximation for apple. Nada, never,zilch. HOLY CRAP i just about fainted. It was the most unexpected yet sweet surprise I have ever had IN MY ENTIRE LIFE! It was beautiful and insane at the same time. I said to my husband, "do you think she will say it again?" I grab the apple out of Ava's hands (already half devoured by her!). My husband positions the video button on his i-Phone......and here is the precious video....

So, I dedicate this video for all my friends who have precious children who are blessed to have (or are about to receive) cochlear implants. Ava is 14 months old and has been hearing for just under five months. And today, without warning or expectation, she said apple. Just.Like.That. I am so HAPPY! She is the "ap-ple" of my eye.

Ava's Song

2009-09-15T16:07:00.010-04:00

Ever since I started writing this blog, it really has been all about...well, Ava of course. But just as important are the members of Ava's family who all play a fundamental role in her journey. Ava is very fortunate to have Markus as her daddy (and I as his wife). Markus is a children's singer/songwriter. He has appeared on Treehouse Tv and wrote and performed the live stage show for Bob the Builder , which has toured all across Canada. Markus also wrote a live stage show for Toopy and Binoo, which is currently touring across Canada. Ava's daddy wrote her a song, which was performed for the first time at Union Hearing Aid Centre's annual "Hear Here" fundraiser. I am proud to post the "unplugged" version of the song, along with the lyrics. To hear the song, click on "Ava's Song" on the sidebar to hear the song OR scroll down to the very bottom of the page and there's a music player with a video montage of the song. The song is currently being mastered at the studio and the mastered version will be posted in time. So grab some tissues, hold your beautiful child and enjoy......

Ava's Song - Words and Music by Markus 2009 all rights reserved

I listen to the wind in the trees
I understand when you talk to me
All the sounds that are part of me
I hear the love of my family

My life is filled with sounds to enjoy
I sing with Daddy when we play with toys
I laugh with Mommy and the girls and boys
All I hear brings me love and joy

It's the words I hear when you talk to me
It's the songs I sing when you sing with me
All the world is opening up for me
When I listen and I hear

I listen to the wind in the trees
I understand when you talk to me
All the sounds that are part of me
I hear the love of my family

Where has the summer gone?

2009-09-06T19:35:00.007-04:00

I can't believe it's September! School starts in a few days as well as hockey, gymnastics, dance lessons, homework, school projects......at least if the weather holds up we should still get in another month of swimming.

Ava resumed her AVT about 3 or 4 weeks ago. Boy does it feel good to have that therapy back. Ava has been hearing for 4 months now and she is 14 months old. She is now at the stage where she is using jargon and sounds like she has her own language. It can be quite amusing, especially when she is angry. If her older sister takes a toy away from her, she will use this really angry jargon at her sister. I can only imagine what the real interpretation is.

Ava's receptive language has really exploded. She seems to understand everything. She can point to 7 body parts when asked. She can do the actions to 3 different songs on verbal cues alone. She can pick the correct object out of a group of 3 or 4 objects when asked "give me the ______" She turns to her name consistently. She understands (but doesn't obey) "no" (she thinks its a funny game instead). Her favourite thing to do is to go upside down on all fours. Here is a video of her doing it on my verbal cue alone.

She still isn't walking yet. She is so close but really not that interested. She can stand alone and hold her balance really well and cruise all over but she would rather crawl - and she does this at lightening speed! Anyone else out there have late walkers?

We spent a weekend in August at the annual VOICE camp. It was held at Bark Lake in Irondale, Ontario. It was our first time there and my husband Markus was asked to do a concert for the kids. It was the most fantastic time ever. We met so many really wonderful families and it was great to swap stories and tips with other parents of kids with CI's and hearing aids. It was really well organized with activities for the babies and kids of all ages - canoeing, fishing, hiking, high ropes, beach and great food. We are looking forward to coming back year after year. Thank you to Rhonda and Shawna for making us feel so welcome. Here are a few pictures.

I will close with a quote from a VOICE poster. I read it a couple weeks ago and it had quite an effect on me and sums up how right we were in our decision to have Ava implanted.
"I am 5 years old. I like school, especially gym. I talk to my daddy when he calls me from work. I tell my dog Scooter stories. I listen to music. I am deaf, I can speak and I have a voice."

NO AVT!!!!

2009-07-13T21:22:00.006-04:00

I know, I know, I haven't been posting as often. My reasons? #1 -S U M M E R! That means 6 kids running in and out of the house. #2 - here in Toronto, the City's unionized employees CUPE 416 and CUPE 79 are on STRIKE. What does that mean? No garbage pick-up. No city-run summer camps (affects 3 of my kids-which means they are home ALL THE TIME) and, worst of all, NO auditory verbal therapy for Ava. That really, REALLY sucks. She's only been hearing for just under 3 months and the therapy is CRUCIAL to her language development. The therapy should be considered an essential service. The longer the delay in therapy, the longer it will take for Ava to catch up. What makes me ill is that we used to have a really great therapist who is a Teacher of the Deaf (TOD) who wasn't connected to the City. But we were told we weren't allowed to use her because she was missing some sort of certification - really a political excuse, but, whatever. So then we were referred to another really great therapist who happens to work for the City and now we can't use her either because of the strike! So, where does that leave us? WITH NOTHING. We have not been successful in finding another therapist as of yet for temporary therapy during the strike. We will have to pay out of pocket and find private therapy, which we will do if this strike doesn't end in the next couple weeks.

Despite not receiving the therapy, I do feel that Ava is still moving along with her hearing and receptive language. She is imitating many sounds now. She vocalizes ALL THE TIME, a real chatter-box. She seems to be building many approximations and her receptive language continues to grow too-we can see she understands more and more words now. So I guess its all good for now but without that professional feedback, the doubts really creep up on me - very unsettling feeling.

Ava just had her Baptism yesterday. It was such a beautiful day and she looked so precious in her white gown. The priest was very considerate and took care not to get her CI's wet. I noticed a few stares from the congregation. That is to be expected. It's too bad that CI's really are quite foreign to people even now-a-days. I would love it if people asked questions about Ava's CI's. The more we can educate the general public, the better it will be for Ava. I took the kids to a fast food place for lunch last week and a kind elderly woman approached me and asked me about Ava's CI's. After I explained that they allow Ava to hear and learn to speak normally, she told me that Ava is a gift from God and how blessed we are to have her. And how right she is!

Happy Birthday AVA!

2009-07-01T19:52:00.010-04:00

AVA IS ONE!!!

Ava turned one year old yesterday! It was such a huge event for us, considering all that Ava has been through in her short 12 months! She is such an incredible, happy and sociable little girl. She is trying so hard to talk and uses her voice all the time. She loves her CI's and loves hearing stories, music, our singing and laughing. While she loves listening to all her musical and noisemaking toys she also loves the quieter sounds, such as the soft gurgling of the coffee maker, and the dings of the microwave when her food is ready. She loves watching her Baby Einstein videos. She loves chasing big sister Lauren all over the house and doubling over with giggles. She loves bubbles and eagerly says "or" for more.

Ava, you are my angel. Never be afraid to dream big. Never believe you have limitations, because you don't. You.Can.Do. Anything. Just spread your wings and fly, baby.

PS - Ava's newscast airing has been postponed to JULY 8TH! Stay tuned.

Amy

Ava's going to be on the news!!!!

2009-06-27T21:43:00.007-04:00

This little monkey is going to be on the local evening news - want an autograph? We were approached by our cochlear implant program and asked if we would agree to be interviewed on a newscast about the importance of early detection of hearing loss. Me, be on tv? Damn right I will! We headed down to Sick Kids hospital so that Ava could be filmed having a mapping done. The following day, the news team came to OUR HOUSE and did some more filming of me working with Ava and then a one on one sit down interview. How cool was that!! The clip will be aired on Wednesday, July 1st (Canada Day) during the 6 o'clock news on Global Toronto. It will be aired across the country. However, for our American friends, you can catch the clip after 8pm (EST) on July 1st on Global's website here. Look on the side menu for "Family Health" with Beatrice Politi. The clip should remain on their website for a few weeks.

Ava's 1st birthday is on Tuesday. Words cannot describe just how special and important this occasion will be for our family. Ava is our miracle baby in so many ways and not just through the miracle of her cochlear implants.

Ava is babbling!

2009-06-15T21:08:00.005-04:00

Last Thursday - June 11th (6 weeks post activation) Ava decided that she would start babbling. YEA AVA! She's giving me mamamamama and rarararara. She is well on her way to acquiring speech. I have been waiting for this day and it came! I am so THRILLED!

Finally, some videos - Six weeks post activation!!!

2009-06-10T14:00:00.008-04:00

I am finally posting some videos of Ava showing her progress with her CI's.

In this video, Ava demonstrates the "ahhhhh" sound while eating (as in using the spoon as an airplane) and her approximation of "all done"

In the next video, Ava is responding to "where's the light" by first looking up at it and then by pointing to it. This video clearly demonstrates the "power of the pause" meaning give your child a chance to respond by allowing ample time to process a question and to formulate a response.

Ava has figured out how to use her little pointer finger. I love it!

Other things.......She can imitate a growl sound for the lion.
She can differentiate between where's daddy, where's mommy and where's Lauren by looking at the right people.
She will point to the eyes on a doll when asked "where's the eyes?"

Stay tuned for more videos....... :-)

Happy One Month Hearing Ava!

2009-05-29T20:41:00.004-04:00

One Month Post Activation

Ava continues to astound us. In addition to consistently turning to us calling her name, she is also able to localize and hear with a lot of background noise (and with six kids coming and going there is a ton of noise!). One example is her high chair is right beside the dishwasher. I had the dishwasher running and left the room and could spy on her without her seeing me. She was fiddling with her cheerios and I softly called her name with the dishwasher running right beside her and she sharply turned her head towards my voice. Without any visual cues she understands when I say "want up?". She also understands the words "banana" and "light" and "all gone". WOW. She sometimes understands "where's your toes?" but not quite consistently yet. When I sing the "happy and you know it" song, she claps her hands and stamps her feet (bangs her feet against the high chair as she's not walking yet) without me having to do the actions for her. AND she SAYS a word approximation for "HI" - she doesn't pronounce it like we would but she uses in the correct context and intonation almost like a two-syllable intonation-it is really hard to describe just what it sounds like but I plan to whip out the video camera tomorrow and try to capture all this stuff because I really don't think anyone is going to believe that she is saying hi (in her own way). If I close the door while she is on the other side of the door, then wait for a few seconds, then when I open the door she greets me with her version of "hi" - she does the same when she opens and closes a door - she does it almost every time. Or if someone just walks in the room that she is in she will look up and say hi. I'm not kidding!!!! She just seems so sharp and aware of all the sounds she is hearing I really believe she is soaking everything in. I am also positive that she has made the connection between having her processors on and being able to hear. Every morning when I put her processors on as soon as I turn the power on her face lights up like you wouldn't believe. I am so grateful for this technology - I am so freaking HAPPY. I never thought I would ever feel free - free from worry about her future, free from the pain from her deafness; that crushing hopeless frightened feeling we felt when learning of her diagnosis. But now, for today, I. really. feel. free.

Documentary Film

2009-05-16T10:20:00.005-04:00

Hello Friends!

Some time ago, when Ava was diagnosed, I set up a google alert on cochlear implants so that any news stories about cochlear implants would be emailed to me. This morning, I was alerted to a documentary being worked on a Chicago Family, the Stark Family, who consist of two deaf parents and two deaf children. The parents decided to implant their two children. The son was implanted at 17 months and their baby girl is being implanted this month. The mother is also going through the steps to be implanted herself as well. The documentary is not due until next year. Here is the link for the news story plus the website. The website contains a trailer-which is quite moving. I find this story to demonstrate the ultimate act of unselfishness that parents do out of pure unselfish love for their children; to give them every opportunity possible. I can imagine just how difficult a decision it must be for deaf parents, already immersed in the deaf culture, to implant their children. I am looking forward to seeing the documentary very much!

http://abclocal.go.com/wls/story?section=news/disability_issues&id=6815556

www.louderthanwordsdoc.com

Post Activation Update-Two weeks post activation

2009-05-13T21:54:00.004-04:00

Making Progress!

It's been two weeks since Ava's implants were activated. She is doing so well. She seems to be paying very close attention to all the new sounds she is hearing. She has such a good attention span. I'm learning through the AV therapy that consistency will be the key to Ava's success. Every morning we do exactly the same lessons with Ava. This is what we are doing at home. We start off by going through all her animal sounds - first, I hide the cow behind my back and make the "moo" sound. I point to my ear and ask Ava "do you hear that?" Ava starts looking for the cow as soon as I make that sound. While I continue moo-ing (hahah that sounds funny) I bring the cow into Ava's view. She gets SO EXCITED when I bring out the cow. Then we say "hi cow!" Ava plays with the cow until she gets bored with it. Then we say "bye-bye" to the cow and Ava puts it into a bucket. I continue with the horse (clop sound with your tongue), sheep, pig, cat, dog, chicken, fish (use the "sh" sound) and snake (use the "sssss" sound). She responds to all those sounds. We also do the same thing with the car (make raspberry with lips while doing brrrrr sound along with beep beep) and airplane ("ahhhhhh"). What Ava is now doing starting this week is vocalizing the car sound when she sees the car and the airplane sound when she sees the airplane. AND she can imitate both the short "ah" sound and long "ahhhhhhhhhhhh" sounds. At two weeks post activiation I'm told that this is nothing short of amazing. She clearly also understands "up" when I ask her "do you want up?" I'm still gesturing "up" with my hands so it may be she understands from the visual cues. Also when I say "give me the _____" whatever she is holding - I hold my hand out and she hands me whatever object she has. I will attempt later not to use the visual cues to see if she can receptively understand "up" and "give to momma". We also do the same songs over and over with her - if you're happy and you know it, row your boat, this little piggie, round the garden. We are constantly naming everything Ava looks at - names of family members, clothing items, food, body parts. I was advised that we should use the same name consistently - for example shoes - not boots, not sandals, not slippers, not sneakers, not runners but all are to be called shoes....for now. Another bonus...Ava's 4 and a half year old sister is a great teacher! Ava is crazy about Lauren and is constantly watching and listening to Lauren. If you can surround your baby with little persons I'm sure it would be a huge boost. We have to make learning to listen fun and what is more fun for a baby than another young child to watch and listen to!

Post Activation Update - Day 6

2009-05-04T21:12:00.010-04:00

Our Superstar
It has been six days since activation. In short, Ava has been constantly amazing us with her new ears! She is both recognizing and localizing sound! She tolerated the different program levels on her processors so well that we were at the highest program setting (P4) in 4 days. Here are a few examples of what she is doing:

Sounds she recognizes:

-microwave beeping

-shaking of box of cheerios

-mommy and daddy's voice

-door knocking

-of the Ling Six Sounds - "ahhhh"

-we have been working on farm animal sounds using plastic fisher price farm animals - we were on the floor playing with the chicken and I used the "bock" bock" sound - Ava played with the chicken for a bit and then threw it off to the side and it rolled about 3 feet away - she became engaged in something else - at that point I started to say "bock bock" again and Ava turned around to look at the chicken she threw to the side - IS THAT A COINCIDENCE OR DID SHE RECOGNIZE THE CHICKEN SOUND? I guess time will tell.

-she REALLY LOVES songs - If you're Happy and You know it, This Little Piggie went to Market, Row Row Row your Boat.

Examples of localization:

-turns to our voice while watching baby einstein dvd or while engaged in play

-turns to sound of rattle in the appropriate direction while engaged in play

-we hide a plastic farm animal under a blanket - then we make the animal sound and she will search for the animal

-turning her head when we call her name - although this is inconsistent and I don't believe at this point she recognizes her name yet but she does hear our voice and turns toward it.

We learned today it takes approximately 10 months of hearing before Ava will form words - that is just average so it could be sooner or later than that time before Ava will start to form words.

Today, Ava had her second MAPing. We received 4 more programs which have increased volume and sensitivity levels. She tolerated the new program very well. I found it a bit troubling that she doesn't react much to the new sound levels but I was reassured that she is doing very well and her auditory nerve is functioning beautifully. (Ava is part of a study of bilateral implantation, therefore, in addition to her regular MAPing sessions, she also spends some time in the hospital lab for additional testing).

Oh, and did I mention that this is SO EXCITING! I look forward to waking up each morning with such anticipation of Ava's progress. Some days, there will be very little change from one day to the next. Other days there will be huge leaps of real progress. Some of the other CI mom's advised me to remember that this journey is not a sprint, but a marathon. While this may be quite true, I came across this quote by Michael Johnson ..."Life is often compared to a marathon, but I think it is more like being a sprinter; long stretches of hard work punctuated by brief moments in which we are given the opportunity to perform at our best".

AVA CAN HEAR!!!

2009-04-29T16:03:00.007-04:00

Activation

Ava's activation was a success! It was the coolest thing ever - like witnessing a live miracle. BUT it was nothing like I expected. There was no drama or a-ha moment for Ava. She was cool as a cucumber. There were no tears nor discomfort - Ava took it as it came. First, the audiologist did a "mapping" of the cochlear implants ("CI's"). I will briefly explain what "mapping" is later in this post. Then one ear was activated first, then other the ear and then both at the same time. In the video below, Ava is hearing through both implants. You will note the change in her eyes/expression when I first start talking to her - she pauses briefly to listen to the sound of my voice.

Mapping

Programming the cochlear implant - called "mapping", refers to the setting of the electrical stimulation limits necessary for Ava to perceive soft and comfortably loud sounds. During mapping, the threshold and comfort levels of each individual electrode (which is in the internal implant) are adjusted in order for Ava to hear a wide range of sounds. There are 22 electrodes. Threshold adjustments are what allows for access to environmental and soft speech sounds. Comfort level adjustment refer to the amount of electrical current needed to hear a comfortably loud beeping signal. These measurements are downloaded into Ava's processors. The initial settings on her CI's are very, very low right now. So, while she will hear environmental sounds like the phone ringing or door knocking and our speech, the settings are too low for her to discriminate the different speech sounds. The audiologist instructed us to increase the sensitivity on her CI's every other day so that there is a gradual introduction to sound, so as not to bombard with so much sound that it would be uncomfortable. Next week we return to the audiologist for another mapping session. Then, her mapping sessions will be on a monthly basis. Mapping sessions are required as over time the settings can become weak due to tissue growth surrounding the implant, thus needing more power or electrical stimulation. Also, when maps are new, they sound really loud to Ava. As she adapts to the volume levels, the volume will seem weaker to her over time and the signal will no longer be strong enough. Therefore her processors will be always be mapped time after time. When a map is performed efficiently, Ava's hearing should be in normal to near normal range!!!

So now that she can hear, what do we do?

Ava will continue with her weekly auditory verbal therapy. There is a hierarchy of learning oral language. First, Ava's receptive language will need to be developed before she can start to talk. She is at square one, like a newborn baby. She now has to learn to listen to all the different sounds in her world. She needs to detect sounds (called Auditory Awareness) - such as the door, phone, a dog barking. Then she has to learn to discriminate sounds such as a cat meowing vs a dog barking or recognize her name being called. There are several additional steps to learning receptive language but I will get into that as we follow her progress. We will be spending our first several weeks pointing out all the sounds for Ava. For example, when the phone rings, we will excitedly point to our ear, look at Ava and say "do you hear that?" and then point to the phone and say "phone". We will praise her everytime she vocalizes. She will learn that language is power.

Ava is already amazing us with her very obvious awareness of sound around her. She is constantly turning her head, although not consistently yet, to the sound of my voice, at close range. She is responding to a knocking sound and clapping sound. I put a baby Einstein video on for her and in the past, she would look at the video then stop to play with something or divert her attention to something else. Today, however, she stared intently at the video and did not move a muscle throughout the whole video! I positioned the speakers so that they were facing towards her. It was incredible to watch!

Stay tuned!!!

Another Hospital stay but Ava has her new Bionic Ears!

2009-04-23T21:20:00.013-04:00

Hello friends!

I am late in writing this as we just got home from the hospital yesterday. Last week, I noticed a lump on the side of Ava's neck. I was told to bring her to the hospital at the same time she picks up her equipment as the clinic is just down the hall from the audiologist's office. Turns out Ava developed an infection in one of her lymph nodes which caused it to fill with pus and swell to about half the size of a golf ball. We were absolutely terrified and were so relieved when we learned it was only an infection. We didn't like the fact that she had to be put under general anesthetic again but it was only for about 15 minutes tops so the surgeon could drain the pus. It really put a damper on the excitement about getting her equipment, etc. but now that we are home with some powerful antibiotics we can finally relax and concentrate on educating ourselves on her new "ears". We picked up Ava's new "ears" Tuesday morning just before being admitted to the hospital. We received a detailed tutorial on the equipment from the audiologist. She gave us two huge boxes of stuff - extra cables, batteries both disposable and rechargeable, recharger, accessories for keeping the equipment on her ears better, drying/sanitizing kits, etc. I read through the manual while Ava was in the hospital so I am all pumped and prepared for the big ACTIVATION DAY!!! Below you will see the coil, which is the round thing on her head. The coil contains a magnet to allow it to stay connected to the implant beneath the scalp. The piece on her ear is called the processor, which contains little microphones to pick up sound and convert it to electrical impulses. The electrical impulses are transmitted through the coil, which then transmits it to the implant under the scalp, which in turn stimulates the auditory nerve. The long wire down her neck is connected to the controller, which is clipped to her clothing. The controller holds the batteries and contains the customized settings (such as volume, sensitivity levels depending on whether she is in a noisy environment, listening to music, in a quiet environment, talking on the telephone or just for everyday listening). Once Ava is about 2 years old and her ears are big enough, the controller will be connected directly to the earpiece processor and worn as one piece behind the ear.

Now Ava is to wear this equipment, unactivated, so that she gets used to wearing it before they turn it on. Because of the surgery she had Tuesday night, we delayed putting the equipment on until today. So, I'm thinking, I've seen how it all works, read the manual, piece of cake; I mean I have hearing aids myself so how hard can it be??? BOY WAS I WRONG! It was not easy getting the equipment on her head at all. I sat her on my lap and doesn't she arch her back, kick her legs, cover her ears with her hands, grabbing my hands, her ears, her hair, ANYTHING to try to stop me from putting the damn things on her ears. I mean who can blame her after all the poking and prodding she received at the hospital being admitted twice since her implant surgery. After I finally got the processor and coil on the first ear, I start putting the equipment on the other ear and well doesn't everything fall off the first ear while I'm trying to put on the other ear! And then the coils fall off while she is squirming. And then the processors fall off again. Fall off Fall off Fall off! I look at my husband and say just how is she going to hear if everything falls off so easily? Out comes the super sticky toupee tape which is quite cumbersome because it is double sided tape and trying to peel the backing off of it is next to impossible. So I tape the processors to her ears and that seemed to do the trick. I adjusted the strength of the magnets so that the coils wouldn't fall off so easily. You have to be careful with the magnets that they aren't adjusted too tight as it will cause sores on her scalp. After lots of tears (both mine and Ava's lol) we FINALLY get everything on and to stay put. On the advice of some other moms I bought a couple Hanna Anderssen pilot caps and put one on so that she can't try and pull her equipment off. The cap looks great and holds everything on nicely. The audiologist told me that once Ava makes the connection that the equipment is what is giving her access to sound, she will readily keep it all on.

We have to remember, that while the equipment looks daunting and weird, it will allow my DEAF CHILD TO HEAR. Young children weren't implanted until the 1990's. Prior to that time, being profoundly deaf meant communication by sign language, going to a deaf school and never learning to speak. NOW my deaf child will hear and speak. She will be mainstreamed at a regular school and will speak just as well, if not better, than her hearing peers. This is nothing short of a miracle.

"A man, as a general rule, owes very little to what he is born with - a man is what he makes of himself"

Alexander Graham Bell

We have an activation date!

2009-04-10T21:17:00.006-04:00

Ava had her one week post-op check-up yesterday. Her steri strips were removed and she is healing nicely. I can't believe how small the incision is. Both incisions look identical. In the picture you can see a small dark scab which is where her drainage tube was.

She has no discomfort from the incisions whatsoever. I was so glad to finally be able to wash her hair.

At this appointment I received Ava's activation date, which is Tuesday, April 28th!! I am so excited!

Ava's Surgery!

2009-04-01T16:34:00.004-04:00

I'm so pleased to report that Ava's surgery was successful! Wow, where to start? We arrived at the hospital at 6am for pre-anaesthetic assessment. Ava was changed into little scrubs, we said our good-byes and she was whisked off to the OR. The surgery lasted about 5 hours and then another 2 hours for recovery. The surgeon was able to make full insertion of the electrodes and they all tested perfectly. Soon after Ava was moved to her room she started acting like her old self smiling and playing with her toys. She had a really good appetite too. The pressure bandage was soaking up a lot of drainage and blood from the incisions and leaked down her neck but I was told it really looked worse than it was and it was a normal amount of blood. She was put on an antibiotic and given tylenol with coedine. It was a long night of on and off sleeping. She developed a fever which, again, I was told was normal and was quickly controlled with tylenol. This morning, I awoke to find that she had removed her pressure bandage herself and was playing with it in her crib! So much for the dramatic unwrapping of the bandages. She didn't have much of an appetite this morning and has been mostly sleeping since we got home.

The next step is returning to the hospital in one week to have the steri-strips removed. Then, in another two weeks we will get her external equipment along with instructions on how it all works, how to troubleshoot, etc. It is highly sophisticated technology. Then, approximately 3-4 weeks post-op, they will activate her implants and she will hear for the very first time. I do not have an activation date as of yet but hopefully find out that date next week!

I have posted a slide-show of the surgery day - which you can view here. Enjoy!

IT'S A GO!

2009-03-29T21:17:00.007-04:00

Ava had her final pre-implant audiology appointment last Friday and we met with the surgeon. We learned that the fluid in her ears is nearly gone - that was what I was most worried about as I understand there would have been a delay of the surgery if she still had the fluid in her ears - she would have needed tubes to drain the fluid first, which is another surgery altogether.

Today I took Lauren and Ava to the Bob Rumball Centre's Easter Egg Hunt. This is also where I took the baby beginner sign language classes a few months ago. I just love visiting the centre because you get to meet other parents who have deaf children and learn from their experiences. I feel so much at home there, being hearing impaired myself. There were kids with all different levels of hearing loss and some of the parents were deaf as well. A lot of the families were using sign language. So many people were drawn to lil Ava - she is so sociable and eager to engage anyone to play.

We are to check-in at the hospital at 6am Tuesday morning. The surgery commences at 8am and is approx. 5 hours long. That will be the longest 5 hours of my life! My parents are going to come from Tobermory to pace the floors with us. I will stay with Ava overnight at the hospital and she will be released Wednesday morning. It will still be another 3 to 4 weeks after the surgery before her implants can be "activated" so as to allow ample healing of the incisions. But soon sweet little darling you will be able to hear me tell you how much I love you. Soon you will hear the birds chirping, doggies barking, Daddy's stories, the doorbell ringing, the beeping of the microwave and the whispers of Lauren's secrets. You will come to know that the colourful mobile over your crib plays three different lullabies and the little red horn on your car goes beep-beep when you press it. There's a whole new world waiting for you Ava and I can't wait to show it to you!

Welcome to Holland

2009-03-21T20:27:00.006-04:00

I came across this piece that was posted by a brilliant mother on her blog. The piece, entitled "Welcome to Holland", was written by Emily Perl Kingsley. Ms. Kingsley is a writer for "Sesame Street" and has a son with Down Syndrome. She wrote the piece to help people imagine what it would feel like to raise a child with a disability. It was Ms. Kingsley who encouraged Sesame Street to include children with disabilities on the show. She has written over 20 children's books and won numerous daytime emmys through her writings for Sesame Street.

WELCOME TO HOLLAND
c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

"But there's been a change in the flight plan. They've landed in Holland and there you must stay."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

That piece reminded me of the raw emotions I felt upon learning Ava's diagnosis. I felt like everything was on standstill - time just stopped. Then the grief and constant crying for two or so weeks. And then, I educated myself. Like a sponge I soaked up any and all information I could get my hands on. Talk to and meet other parents, join support groups, talk to professionals, surf the web, borrow books and videos from the library, take sign language classes -. And then, the grief stops - you smack yourself in the back of the head and say ENOUGH its time to move forward. You have a beautiful, healthy baby who cannot hear. What are you going to do about it? Just like in the beautifully written piece by Ms. Kingsley, you catch your breath and notice all the beautiful things that Holland has to offer and you realize you would never trade Holland for Italy, ever....

Ava's surgery is only 10 days away! We have one more appointment left with audiology on March 27th. At the last couple appointments the audiologist was unable to do part of the testing due to fluid in Ava's ears from a cold she had a while ago. I hope it is all cleared up - I'm not sure if that will affect things if she still has fluid in her ears as far as the surgery date. We also have an appointment with the surgeon that day. Hopefully I will find out the time of the surgery and pre-op instructions at that appointment.

Thank you for reading and God bless :-)

Cochlear Implants-What they look like and how they work

2009-03-15T10:39:00.005-04:00

Cochlear Implants - Surgery

With Ava's surgery just over two weeks away (two long weeks that is!), many of you are wondering just what exactly will be done to Ava? Last month I came across a webcast of a live surgery of a little boy receiving his second cochlear implant. The webcast is about 1 hour long. The surgery is narrated by the surgeon in real time as well as the audiologist who gives a description of the implant and how it works. WARNING-the webcast is graphic so if you have a weak stomach then I recommend you do not watch it. If you do watch it, you will be amazed at how miraculous the technology really is.

http://www.or-live.com/RainbowBabies/2419/

In the US, I believe the surgery is an outpatient procedure. However here in Toronto the patients are kept in the hospital overnight and discharged the next day.

The small incisions take about 3-4 weeks to heal. At around 3 weeks post-op, we will be given all the external equipment as well as equipment instruction. Ava is to wear the equipment not yet activated for one week to get used to having it on. At around 4 weeks post-op, we will see the audiologist who will then "activate" the cochlear implants and Ava will hear for the very first time! We will be sure to videotape this activation for all to see. Some babies react to the sudden onset of overwhelming sound by crying (which is a good thing because that means they can hear!), some babies don't react much at all at first. This is all very exciting, however, the fact is that once the equipment is activated, it is going to take a few years of weekly auditory verbal therapy for Ava to make sense of sound, to give it meaning and develop language. Essentially, Ava's hearing will be that of a hearing newborn baby once she is activated. She will have to play catch up so that by the time she enters kindergarten she will be even with her hearing peers in terms of speech and language. She has a head start because she is being implanted at such a young age. The rate of success of catching up to her peers is high and quicker than those implanted at a later age. It will take hard work , perseverance and patience. Ava is so lucky to have 5 siblings at home to constantly bombard her with language. We can see she wants to communicate so very much as she is always studying the movement of our mouths while we talk and seems puzzled by it.

How do cochlear implants work?

In normal hearing, sound moves in the ear canal and strikes the eardrum. The soundwaves cause the eardrum to vibrate which move the inner ear bones which in turn cause the fluid in the inner ear to move the hair cells inside the cochlea. The hair cells convert this movement into electrical impulses which are sent to the auditory nerve into the brain thus the brain perceives sound. In sensorineural hearing loss, the hair cells inside the cochlea are damaged therefore the brain doesn't receive sufficient electrical impulses. In persons with mild, moderate to severe hearing loss, such as mine and daughter Lauren's, hearing aids are sufficient to amplify the sounds so that the remaining hair cells can still be stimulated and do their job. In Ava's case however, the hair cells are too damaged or missing altogether so hearing aids cannot help her.

A cochlear implant consists of an internal component and external components. When Ava has her surgery, the surgeon will be placing the internal component, which is a receiver/stimulator that is positioned under the skin in a bed created in the bone behind the ear. An electrode array, consisting of 22 tiny electrodes is surgically inserted approximately one inch into the cochlea.

The external components, which will be on the outside of the head, consist of a light-weight sound/speech processor (resembles a hearing aid) composed of a directional microphone worn behind the ear and a transmitter which is placed over the spot where the implanted receiver is located and held in place by a magnet.

How it works - the external sound/speech processor (which is the device behind the ear that looks like a hearing aid) captures sound and converts it into digital signals. The processor sends the digital signals to the internal implant which is under the skin behind the ear. The internal implants converts the signals into electrical energy, sending it into the electrodes inside the cochlea. The electrodes directly stimulate the auditory nerve bypassing the damaged hair cells and the brain perceives these signals as sound.

What does it look like?

This is what the external components look like. Because Ava's ears are so small, the sound processor is too heavy to stay on her ears. The processor can be separated so that the microphone part, which is lighter, can stay on her ears while the bottom half which is the controller and holds the batteries can be pinned to her clothes or inserted into pockets I will have to sew on or inside her shirts (more like a job for Ava's grandmothers I can barely sew a button). When Ava is about 2 years old or so, her ears should be able to support the full weight of the sound processor and controller (BTE or behind the ear).

Below is a link showing a diagram of Ava's external components. We will be able to choose what colour we want to use - probably dark brown to match her hair.

http://products.cochlearamericas.com/diagram/freedom-babyworn-diagram

I hope I have given a somewhat accurate description of the surgery and components of the cochlear implant. If you come across this blog and note any inaccuracies, please leave me a comment so that I may fix them.

AV therapy and new tricks

2009-03-11T21:50:00.000-04:00

Ava's auditory verbal (AV) therapy is every Monday but we had to reschedule this week so we had therapy today. Ava has an amazing therapist named Sandra who was also my daughter Lauren's (4, bilateral hearing aids-moderate loss) therapist. Sandra has been working very hard at trying to get Ava to detect some sound so as to form pathways in the brain so that once Ava starts hearing with the implants, sound won't be so foreign to the brain. Also we have been working on getting Ava to vocalize as a means of communication (other than crying of course). One of the sounds we have been working on is "uh oh!" whenever Ava drops a toy off her high chair. Well today Ava dropped something and Sandra did her usual "uh-oh" and paused for Ava's reaction and Ava actually said "uh-oh" back and looked back at Sandra for her reaction! It was more like "uh uh" but it was definitely a deliberate attempt at vocalizing that sound. Sandra and I looked at each other completely speechless for a few seconds and then we started hollering with excitement. Another new trick Ava did today was while Sandra was showing her this toy where there are different knobs and a Sesame Street character pops up when the knob is manipulated. Ava really loved this toy. I started asking Sandra a few questions about Ava's upcoming surgery so Sandra's attention was diverted to carrying on this short conversation with me when suddenly Ava decides she's had enough of waiting to be entertained so Ava grabbed Sandra's finger and placed it back on the toy so as to indicate to Sandra "ok enough gabbing let's get back to work now". This is all so exciting as there have been times where Ava didn't really respond much at all to therapy but lately she has been demonstrating that she is definitely getting something out of it despite hearing very, very little with her hearing aids.

I didn't make it down to the hospital for Ava's blood test today. We will be going tomorrow morning instead.

Introduction and Background

2009-03-10T21:02:00.000-04:00

Welcome!

I am new to the blogging scene so I will learn as I go along. The purpose of this blog is to share my experiences as a mother of a deaf child in the hopes it may comfort other parents who are just learning of their child's diagnosis of profound hearing loss. I've spent countless hours researching the internet, reading many, many wonderful and informative blogs and talking to many professionals about my daughter's options.

A Little Background

My name is Amy and I am happily married with 5 children and 2 stepchildren. I was born with sensorineural hearing loss in both ears (severe to profound in right and moderately severe in the left) and I wear hearing aids. My husband is hearing. My 3 oldest children are hearing, my fourth child, born December, 2004, has moderate hearing loss and wears hearing aids in both ears. Then, little Ava, born June 30, 2008, was diagnosed with profound hearing loss in both ears when she was nearly 3 months old. We were completely shocked since Ava had passed one of the the earlier screening tests in her right ear! I was devastated and spent a good week grieving. We were referred to Toronto's Hospital for Sick Children's wonderful Cochlear Implant Program and haven't looked back since!

Method of Communication

For my husband and I, our decision to give Ava cochlear implants was a no-brainer. We live in a hearing world so naturally we want Ava to be able to hear and speak. That is not to say I didn't research all of the possible methods of communication. We even took a basic sign language course to learn a few signs because for the time being, Ava cannot hear, so we want to be able to communicate with her in the most effective manner possible, until such a time that she can hear. She can do the sign for "milk" and "more" and knows the signs for "bath" and "all done". She lifts her arms when she wants up and can wave "bye-bye". If Ava later decides that she wants to be part of the deaf culture then that will be her choice. But for now, we as her parents feel this is her best option since the younger the child is when they receive cochlear implants, the greater chance they have of developing normal speech and language. Our goal is to have Ava mainstreamed into regular school at kindergarten.

Here is a link to the Hospital for Sick Children's Cochlear Implant program. Here you will find information about how a cochlear implant works and about the candidacy process. http://www.sickkids.ca/CochlearImplant/Cochlear-Implant.html

Ava was fitted with her hearing aids as part of the cochlear implant process in October, 2008 (4 months old). She also began her auditory verbal therapy soon afterwards. The hearing aids have been of very little benefit to Ava. However, with the aids, she certainly can detect certain loud sounds that are close to her such as a maraca or the "ah" sound and will turn her head toward that sound. With her aids, she seems to respond when my husband plays the guitar for her or if we have a CD playing with the volume turned way up. She is a very happy and vocal baby full of giggles. She loves to be tickled, fly like an airplane in the air and play peek-a-boo. She is very visual and at times studies her toys intently before shoving them in her mouth whenever possible. She is trying to figure out just how to feed herself a cheerio as it never seems to make it to her mouth getting lost somewhere in her tiny fist. She is sitting up well and is about to crawl any day now. Her favourite person in the whole wide world is her older sister, Lauren, who is 4.

Ava had her MRI a couple weeks ago. All seems to be well because they called me with a surgery date of March 31st-she will be 9 months, 1 day. We were told, however, the MRI showed some kind of a cyst and that they need to run a blood test but that its nothing to worry about and is one of those things had she never had an MRI we would never know about the cyst. Of course I'm going to worry a bit. I mean will the cyst grow, etc. and what are they testing for? I will ask tomorrow when we go down to the hospital to do the blood test. She also must fast for the test and can't have anything to eat/drink after midnight tonight. That is going to be a challenge as she has been waking up lately demanding a 5am snack!

One Implant vs. Two?

We have decided bilateral implantation is the way to go. With two implants, Ava will be able to better localize sound and understand speech in noisy environments. That's the problem I have with hearing aids, it only acts as sound amplification so when I am in a noisy environment the background noise gets amplified too so it is hard for me to understand speech and I have to rely on lipreading. Two ears are better than one. If for some reason there is ever device failure on one side Ava will still be able to hear. My husband and I did initially think we would only do one implant given some of the success stories of children with one implant but we are convinced two implants are best.

So, there you have it, my first blog post. In the months to come I hope to post details of Ava's CI surgery, activation, mapping and language progress. I will also tell you more about my wonderful blended family. I hope this has provided you with some comfort if you are a parent early in the days of your child's initial diagnosis of a hearing loss. There really are so many options available if you take the time to do some research and coming across this blog is a great way to start. I am so very excited and looking forward to Ava's upcoming surgery and bright looking future very much!