One year later!

All is well here for Ava, who is now 5 and a half and has been hearing for nearly 5 years (April).  Her senior kindergarten year has been smooth sailing; especially since she received her personal FM system last year.  She is seeing her TOD twice a week and with her TOD she has been working on developing a brochure that demonstrates the steps to attach her receivers and activate her personal FM system.  At this stage, Ava is learning how to identify the various parts of her cochlear implant and indicate when her cochlear implant and FM system are not giving a clear signal.  Self-advocacy is a very important skill to have and it is practiced over and over at school.  This will give her the confidence to speak up when she cannot hear something at school.  She is also creating a power point presentation "All about Me" which will be presented to her classmates in April.  She is very excited about her projects and enjoys her time with Mrs. Manocchio, her wonderful TOD.  Ava is enjoying a very active social life, attending numerous birthday parties, ballet and hip-hop classes as well as a weekly gymnastics class.  And we just signed her up for summer soccer!

Ava just received her latest progress report card and I am proud to announce that she has met ALL expectations for a kindergartener.  Even better, she is reading well above grade level.  I find that many of our CI kiddoes who were identified early and implanted at a young age, do extremely well in reading.  This gives them a great foundation to carry through-out their school age years.  In addition, her TOD reports that she continues to have developmentally appropriate speech and language. Yippee!

I notice that most of my other CI momma friends are also blogging much less frequently.  Most likely due to the normalcy of our lives, which was what we all hoped and prayed for when we first received our child's diagnosis of profound deafness.  I honestly could not be happier with Ava's continued successes and she has exceeded all of my expectations.

Cheers!

Still Here/Hear! Travelling, Reading and FM Systems

Waiting for our plane to arrive

My older daughter pointed out last week that I haven't blogged since October!  I really didn't have much to blog about that would really interest anybody.  However, I have lots of news and new experiences I would love to share.

TRAVELLING WITH COCHLEAR IMPLANTS

My husband and I travelled with Lauren and Ava to Mexico last month.  It was Ava's first airplane trip with her CI's.  I put all of Ava's CI stuff in my carry-on:  charger, zephyr drying box, personal audio cable, rechargeable and disposable batteries, remote.  I didn't say anything to the security staff.  Just left it all in my carry-on bag and it went through the x-ray machines no problem.  Ava walked through the security x-ray no problem either. I didn't point out her CI's or anything.  I had her CI identity cards with me in case they asked about her equipment but they did not.  (I have never had to inform security about my hearing aids/accessories before so I didn't feel the need to bring up Ava's CI's.  While on the plane, Ava was able to listen to the aircraft's radio using Cochlear's personal audio cable.  She also was able to watch movies on the iPad using the personal audio cable which connects her processor directly to the iPad.   Lauren has the music links by tech ear for her hearing aids so she was able to watch the movies together with Ava using the same port (my husband bought a dual earphone splitter from Best Buy so they could both hear the movie at the same time using their different devices).

Ava listening to music with her
Personal Audio Cable

Ava checking out emergency
flight procedures

Getting ready to snorkel

Chillaxin with a virgin strawberry daiquiri

Girls with their new braids

The trip was fantastic.  Ava snorkeled out to the reef with us (we practiced in the pool first), swam and played at the waterpark.  We left one of her processors on at the water park - she splashed about, went down the waterslides, dunked her head in the water and even stood under waterfalls with no problem leaving the processor on.  We fastened the cable to her hair using a claw-like clip so that the processor wouldn't fall off and get lost.  We plan to purchase Cochlear's waterproof bags this summer for swimming in the pool.  Hopefully she will be more receptive to this as she didn't like using the aLoksak bags.  Ava also wanted to get her hair braided.  She had the half head version so that her coils would still be able to stay on her head.

AVA IS READING!

Ava's  Student of the Month photo

 Ava is doing very well with her reading.  A video clip of her reading is HERE .    I am so proud of her!  In the clip she keeps asking me if I'm "taking her picture" as she doesn't like to be photographed.  While I'm taping her with my cellphone, I had to keep reassuring her I wasn't taking a picture (ok, I was taking a video, not a photo - not the same thing - if I admitted I was videotaping her, she never would have read for me on camera - so yes I sheepishly admit, I had to tell my daughter a "little white lie" to get her to read on film)

AVA AT SCHOOL - FM SYSTEMS

Ava has been struggling to hear in her new all-day kindergarten classroom.  Her classroom is the worst possible imaginable set-up for a child with a hearing loss.  Her school built a new addition to accommodate three new full-day kindergarten classes of 90 children.  These three classrooms are side by side and separated merely by a wall between each of them that does not meet the ceiling.  There are no doors separating these classrooms from one another.  It is a total acoustical nightmare.  When one class is singing, the other class will join in.  With Ava's classroom being the middle room sandwiched between two outer classes totalling 60 rambunctious 4 and 5 year olds, the background noise coming in from both classrooms into Ava's room is overwhelming.  The hearing kids even struggle to stay focused.  Ava received a soundfield at the beginning of the school year but it just was not working well enough for her.  Her TOD saw all the signs that she was not hearing well.  She would tune out during story time and was not participating in class discussions.  She could not follow teacher instructions and seemed lost, uninterested and distracted.  There were also some slight behaviour concerns.  And Ava was absolutely miserable and exhausted by the day's end.   I did some research and felt that Ava would benefit greatly from a personal FM system.  I had my reservations about a personal FM system for Ava since she is only 4 years old and would not be a good reporter if something were to go wrong with the FM.  I also had reservations about using the MYlink neckloop system, which is favoured by the school board since it's cost-effective.  The MYlink neckloop can be wonky, Ava hates having her telecoils switched on as she cannot stand the constant buzzing sound from electro-magnetic interference and I was worried about safety with having something around her neck that can be whacked at other kids or pulled on by 29 little kindergarteners in her class.  We had a meeting at the school with the Vice-Principal, TOD, Ava's classroom teacher and the educational audiologist to discuss solutions for Ava.  I wanted Ava to receive Phonak's ML14i receivers which are WAY better than the neckloop system.  I armed myself with research supporting the benefits of the receivers vs. neck loop - some of the advantages are: no electromagnetic interference buzzing, better sound quality, better speech intelligibility in noise, better dynamic capability and better signal to noise ratio than the neck loop.  You just plug the small receivers into her processors and that's it.  No remote to fuss with.  However, the receivers are more expensive than the neck loop system.  It just so happened that the educational audiologist had in her office two ML14i receivers on hand and Ava could have them! The following week, the board audiologist and Ava's TOD came to the school with the new receivers.  It took some coaxing for Ava to agree to let them touch her processors, let alone wear the receivers.  But after some bribery and little tricks, Ava finally let them put the receivers on.  Let me tell you that a couple hours later, Ava's teacher personally called me on the phone with these words..."I don't believe it but it's like you have a different child....." Ava participated in the classroom discussion, answered questions, was totally focused during story time etc etc.  I was so freaking relieved.  And to think of what she has missed these last 6 months of school.  I should note that Ava remains on par with her peers academically; but had we left things the way they were, she surely would have fallen behind both academically and socially.  We can now breathe a little easier and sleep at night rest assured that finally, she can hear at school.

Happy Halloween!

 Happy Halloween!

Ava just received her new Skin-its for her processors!  We are really happy with them.  The skins fit both the regular length and compact rechargeable batteries.  

When Ava removed her processors tonight, she put them both together like this and said "look mommy, my CI's make a heart".  I love that kid!

Ava starts Kindergarten!

Ava in her uniform

Ava started Kindergarten this month.  It has been going super well.  I had some reservations as Ava's school implemented a full day program for the first time which meant she would be in a class of 30 noisy three and four year olds together with one teacher and one early childhood educator (E.C.E.).  This, coupled with the fact that her classroom is openly connected to two other noisy 30 kid full day Kindergarten classrooms, made me worry that noise would be an issue.  We decided before school started that she would benefit from a soundfield system in her classroom and this has made things oh so much better for her.  Both the teacher and ECE wear the transmitter and they alternate between the two of them who would be doing the teaching as they both cannot be on the system simultaneously.  They have worked this out very well between the two of them.  Also, the soundfield is portable and it is brought to the gym and worn by the gym teacher.  The proof that the soundfield is working well for Ava is how she comes home day after day demonstrating the new songs she learns at school; how she remembers the lyrics and has a pretty good articulation of the songs.  She blew my socks off with her near perfect rendition of our national anthem "Oh Canada" last week.  She is making lots of new friends but lucked out with having her best friend from pre-school placed in her classroom (one of the perks of having a child with a disability).  Her compact rechargeable batteries last throughout the school day but we find that they run out of power a bit sooner now thus we are changing her batteries at about 6pm daily.   Her itinerant TOD comes in once a week to make sure the soundfield is working efficiently and spends time with Ava in the classroom to get a feel of how things are going for her, and to see whether the classroom needs any further modifications to reduce noise.  Soon, Ava will be pulled out of her class once a week to work one on one with the TOD.  One of the projects they will work on is introducing her cochlear implants to her classmates.  Cochlear Corporation apparently has colouring books that we can order which Ava can give to her class while she is doing her presentation. 

There are a couple exciting products for cochlear implants that I am dying to share:

SKIN-ITS - I've ordered Ava "skins" which are custom made for her Nucleus 5 processors.  I can't wait to get my hands on them.  She is so excited.  She picked out a Hello Kitty design.  Her brown processors are so.....boring and look like, well, like medical devices.  The skin-its will certainly give her CI's character and I'm sure her classmates will be sooooo jealous :)

WATERPROOF BAGS for Nucleus 5's. - Cochlear Corporation (finally) came up with their own solution to waterproofing the Nucleus 5.  A custom made waterproof ziploc-type single use bag so Ava can wear her processors on her ear and go SWIMMING.  Click here  for a picture of the bag.  From what I can tell, Ava will still have to utilize a swim cap given the fact she dives in 8 feet of water for pool sticks.  Ava was not a fan of swim caps so we will see if she will be receptive to wearing the new bag.  Certainly a step in the right direction by Cochlear and I trust we will see a fully waterproof processor in the near future!  The bags are available in Canada (yay for us) but are just awaiting FDA approval.  

Summer Camp! (and another speech sample)

Ava has been spending a few weeks this summer doing full day camp programs.  She will be starting full day kindergarten this fall.  She has adjusted extremely well being away all day.  The last two weeks, she has been doing the gymnastics program.  She really loves it.  I keep her processors on using wig-tape and I secure her cables to her hair using little mini hair clips (the claw type ones with the spring).  Also, I screwed her magnets in a little closer to her head so that the  coils wouldn't pop off so easily.  This worked really well for her.  

I really love how they teach the kids new songs at camp.  In the past, when Ava would learn a new song at school, I would have to practice with her at home to make sure she has her articulation down pat.  She would often mispronounce some of the lyrics; especially new vocabulary.

Yesterday she came home from camp having learned the "Doggie Doggie Who's Got the Bone" song.   I was SO impressed that she learned the whole thing in one day.  With the exception of a couple of words, she did really well with it.  She was so dang cute I just have to share it with you!

Meeting Rachel!

Today was an extra special day for us, definitely one of the highlights of my year.

Let me tell you why.

Rachel and Ava

A few years ago,  while in the midst of shedding tears  trying to get my hands on ANYTHING I could find out about deafness and cochlear implants for Ava, who had just been diagnosed as profoundly deaf, I came across this amazing blog "Cochlearimplantonline.com".  The creator of that blog, is Rachel Chaikof.  Rachel is a young woman who is deaf and has bilateral cochlear implants.  She was implanted at the age of 3 in 1989 and was one of the first children to be implanted in the U.S.   Rachel is a success story.  She excelled in school, mastered the french language, received numerous academic awards, became a poster child for Better Hearing and Speech Month, graduated Summa Cum Laude from the Savannah College of Art and Design and works as Community Engagement Manager for a company that provides an on-line platform for corporations managing community involvement.  You can read more about Rachel's accomplishments here.

Today, we were super excited because we got to meet Rachel in person.  My husband and I were in awe of her.  She is the whole package -  intelligent, articulate and beautiful.  My husband got to talk about US politics with her and I got to talk to her about FM systems, her experiences as a college student living in residence and learn things about the functions on Ava's processors that will come in handy when she is older.

And Ava, went to bed tonight, excitedly chatting about her afternoon with Rachel "who has CI's like me Mommy!"

Rachel, thank you from the bottom of our heart, for doing what you do. For reaching out to the 70,000 people per month who read your blog, a place where one can learn all he or she needs to know about  hearing loss and cochlear implants.  For your tireless efforts to spread awareness about hearing loss.  And especially for taking the time to meet Ava.  There really is no better role model, than you!



Ava has graduated from Pre School!

Ava graduated from Pre School yesterday! I can't believe the year is over.  She had a fantastic year at Silver Creek Pre School.  She met all of her language goals and we couldn't be more proud.  She blossomed socially and made a ton of friends.  She was so eager to participate in anything and everything, especially  "Show and Share".   She was always super excited to go to school each day.  

Ava receiving her diploma from her teachers Sueann and Tahlia

Earlier this week, I attended a Case Conference with the administrators of Ava's new school where she will be attending Kindergarten this September.  At this meeting, it was determined what supports Ava will receive at her new mainstream school.  She will receive a Soundfield system, weekly intervention with her d/hh itinerant teacher, in-service for the staff on cochlear implants,  her classroom will have the appropriate modifications made to reduce background noise such as hush ups on the chairs.  Her existing IEP will be carried through to the new school and adjusted in the fall.  While her articulation is improving, it is still not quite age-appropriate in terms of when she is speaking in sentences.  There is still work ahead of us in making sure she continues to progress with her language and not fall behind.  We will miss having her weekly TOD visits which were chock full of therapy.  In fact I plan to make an appointment with her auditory verbal therapist to have an assessment done to see exactly where she is at and from this arm ourselves with some goals to work on for the summer.  With our deaf kiddos, we always have to be on top of things and work ahead whenever possible as it is so easy for them to fall behind at school.

Attached is a video clip of Ava reading some words.