Thursday, January 22, 2009
A little background. Aiden's getting simultaneous cochlear implants, meaning, they are implanting both ears at the same time. This is not the norm, but becoming more so. Typically, if a child is getting both ears implanted, they are implanted sequentially, whether within a few months of each other or even a year or more of each other. We knew if we were to go bilateral with Aiden, we wanted them done simultaneously for two reasons; one, this would mean only one surgery and two, he would be hearing from both ears within days of each other.
At Aiden's last soundbooth, they gave me his appointments for activating his implants. The CI center we chose, doesn't activate the implants (turn them on) for three to four weeks from surgery to begin with and does not turn on both ears together. So they scheduled Aiden's first activation for March 9th and what we thought the second to be, March 18th. We were ok with this, not extremely excited, but it didn't run us off (a lot of centers will activate within days or couple weeks after surgery and activate both ears at the same time, or within a couple days of each other). They explained they like to make sure the first ear's maps (programming the implant is called "mapping" and it takes a few appointments to get the maps where they need to be in order for the recipient to be successful in learning to hear) were established prior to mapping (or programming/turning on) the second ear to hear.
Come to find out, Aiden is not scheduled for his second ear's activation until April 27th! I was under the assumption this would be a week apart, two at the most. Not over six. This also means that one ear will go with NO SOUND WHAT-SO-EVER from Feb. 11th to April 27th. This is not okay with me! So I sought out the help of the powers to be from CiCircle (an awesome Yahoo group of parents with children who have cochlear implants) and asked what other parents had experienced when it came to simultaneous implants. They answered as expected ... their child's "ears" had been "turned on" the same day OR within days of each other so both ears could learn together.
I'm not a confrontational person. In fact, I hate debating, arguing, or anything that could possibly bring on a disagreement. BUT, this is MY SON. If I learned anything during my dad's illness it was that he couldn't fight for himself and if I didn't fight for him, nobody would, I learned to become confrontational, in the right way (and sometimes not so right way). Same with Aiden, he cannot fight for himself, so if I don't advocate for him, who will? This has been weighing on my mind and it upsets me the more I think about it. Am I overreacting? Should I just be happy we have the surgeon we wanted since day one and be happy he still only needs one surgery? I always hate to feel selfish, that I should just be lucky my son's getting implants at all.
But honestly, why even get simultaneous implants if they're not going to turn on both ears within at least a week of each other! The whole thought process is for both ears to start hearing at the same time, and the more I think about it, the more upset I get, and the more I want BOTH ears activated on the same day! Why not? Then Aiden will begin learning to localize sound immediately and will go through therapy using BOTH ears - IMMEDIATELY, instead of teaching one ear for over 6 weeks and then having to turn around, turn off the first ear, and teach the second ear what the first just learned!
So what to do. I've been going round and round in my mind how to address this. We like our CI center, we like our team. Do I just trust them and go with it? Or do I follow my mom instinct and fight it? I know what I have to do. It's for Aiden. It's for his hearing. We've been working our booties off all year and if he's getting both ears implanted at the same time, they should be turned on at the same time. There always has to be a "first" for everything, right? Maybe Aiden will be the first at our center to have both ears activated the same day. Who knows. I do know this though, if I don't fight for my baby, no one else will.
Wish me luck. Oh - and any suggestions or advice on how to handle this/why same day activation is best is always greatly appreciated!
Tuesday, January 20, 2009
We took the past month or two and really looked at all the pros and cons of bimodal (one CI and one hearing aid) and bilateral (two CIs). We researched and read all we could on each. We know families whose child(ren) have been successful with bimodal and bilateral CIs. We questioned and questioned, but what we always came back to was that bilateral would be best for Aiden. We decided to wait and make the FINAL decision the day of this past soundbooth, but with no improvements, our decision had been made.
Here are just a few things we looked at when making our decision.
What we liked about bilateral CIs:
- Better localization and better understanding of speech in noise-- Kids learn so much from other kids and we believe that bilateral CIs will be a huge help in the classroom - for the noise and to help determine whom is speaking and from which direction.
- Better sound quality and more sound balance
- Less fatigue at the end of the day - I know at the end of any seminar I attend, I am worn out. Who would ever think listening would be such a hard task, but for a deaf/hoh child, even with cochlear implants, it can be very tiring!
- If one side breaks, there's the second one for back up.
- I also read many personal stories from parents or kids themselves saying that their child became more social with peers and participated more in class once they were bilaterally implanted. I believe this has to do with confidence. I can relate this to one of my fourth graders. I knew his hearing could fluctuate due to fluid/tubes. Whenever he was very quiet in class, stopped participating, and was very apprehensive if called upon, it alerted me to contact mom. Once the problem was corrected medically, he was a whole new student.
In this write-up, Is Bilateral Really Better?, this wonderful mom (and mentor to all us newbies out here), did an excellent job comparing unilateral vs. bilateral CIs. And, as she states in her article, bilateral CI's are not for everyone. There may be significant usable hearing in one ear, there may be insurance issues, or maybe medical issues that do not allow for two implants among other things. We are lucky that we have the choice between bimodal or bilateral, and bilateral is what we've determined is best for our baby.
What we liked about bimodal:
When we started seeing Aiden doing well with his hearing aids and learned his deafness was due to EVAS, we started thinking about just implanting one side. Here are factors we considered when making this decision.
- Use of residual hearing -- Through the great use of his aids and his learning to listen, Aiden has shown us that he does have some residual hearing, and therefore the sound of music and sound quality in general could be better for him. With CI's you hear electronically, with hearing aids you still hear acoustically (the difference was described to me by the analogy of a song played on an acoustic guitar vs. the same song played on an electric guitar). In a bimodal situation, it allows for all sounds of speech through the CI (hearing aids provide more lower frequency sounds than the higher ones), yet still allows for natural acoustic hearing through the hearing aid. One thing we had to consider though, was with his EVAS, his residual hearing can be lost progressively, or one day, completely gone.
- Future technological advances - This has always been a thought in the back of our minds, should we "save" an ear for future technologies? We are sure that one day there will be better technologies, but we decided we needed to stay in the now and the known. NOW is the time that Aiden is in his prime learning stages and what we know is that cochlear implants will provide him optimal learning capabilities.
When researching bimodal, this is one article I found interesting.
All in all, we decided that bilateral implants are a better choice for Aiden and our family. Therefore, on February 11th (with certification from our insurance, which we're still waiting on, please cross your fingers all goes through!), Aiden will get his cochlear implants. Our surgeon agreed to perform simultaneous implant surgery, which will save Aiden from having to go through a second surgery months from now. Recovery may be a little rougher (hard to sleep on either side), but again, we feel this is the best for Aiden and we can't be more excited (or nervous)!
Wednesday, January 7, 2009
It's FREE to parents who have children with a hearing loss!
Here is the information Becky sent out:
If you are not already registered, we still have some space available for attendance at Cooks for the Unlocking the Doors for Academic Success for Children with Hearing Loss!
The Keys: Reading Aloud, Phonemic Awareness, Oral Narration with Kathryn Wilson, from the First Years Program at UNC-Chapel Hill.
Thursday and Friday, January 22-23 at Cooks OR by webinar for those outside Fort Worth and Tarrant county area.
We also have available for this presentation as a live webinar/web-stream for those outside the Fort Worth and Tarrant County areas (this is what it would look like on your computer http://av.cookchildrens.org/media/rehab102308/. Please look over the agenda – much of this information is applicable to all children for preliteracy, reading readiness, phonemic awareness.
The option for webinar is in the box that lists costs on the second page of registration.
PARENTS OF CHILDREN WITH HEARING LOSS MAY ATTEND FREE ON ANY OPTION – but please register asap.
Please pass this along to your colleagues (and friends - I added this *SMILE*). The agenda is attached so you can see the outline. Parking is free.
Cooks is an approved provider for continuing education activities in speech-language pathology and audiology. This is offered for 1.4 CEUs. Pending approval for AG Bell Academy for Listening and Spoken Language CEUs.
Early registration deadline is extended to Friday 1/9/2009. We accept purchase orders, credit cards, checks, and cash is still good. If your place of business cannot get a check cut by Friday, please send in your registration by FAX (682.885.1878) and we will give you the early rate J.
Have a wonderful 2009!
Becky Clem, MA, CCC-SLP, Cert. AVT
Thank you so much Becky for all these wonderful workshops! You are amazing & we miss you tons!
Monday, January 5, 2009
The last few weeks I've thought and thought about 2008. So much hit me ... from a parent's death to new life to a move across country to starting a new life in a new area to a son going through puberty and a daughter wondering why all this is happening. A year of wonder, laughter, unanswered questions, sadness, joy, smiles, relief, new adventures, and so much more.
I can't say that 2008 was a HORRIBLE year - did pieces of it suck? You bet! It started out with my father's death in January; I still cry at least once a week missing him. But it's getting easier, day by day. I can't base 2008 after this though. He was sick with dementia for many years before this, 2006 & 2007 being his worst years. By January 2008 we took him off all medications and just let him be. Let him not get poked & prodded anymore. And in January 2008 he was set free ... and his family was by his side as he made his journey. We gained a guardian angel that day. Oh how I miss him! Damn how I miss him!
From there, two months later, Aiden was born - DEAF. Just when I thought I was picking myself back up - BAM - I was knocked back down. I cry still missing my dad, but I cried harder back then, for Aiden ... or really, realizing now, for me. I was devastated in a way I've never been devastated before. I was MAD. I was ANGRY. I was PISSED. And I didn't understand why all this was happening to me.
At that point, I went full force. To do everything I could to learn about this "deafness" I never even thought twice about happening to any of my children. But it did. And we dealt with it. Or should I say, we're dealing with it, pretty well I'd like to think.
We had a team that changed our view on what it means to be born deaf today. They provided us hope, wisdom, and faith. They taught us. Our team became our family; our strongest advocates, and I can't thank them enough for all they've taught us. I also met a wealth of moms on the web who were experiencing the same things I was as a parent of a deaf child(ren). A whole new group of friends, who just "get it".
On top of this all, my better half (really, he keeps me calm and so much more), who is a very morally right person, especially when it comes to his job, decided it was time to move on due to lack of the same morals from his upper management. And so, after 12 years, we uplifted our family, sold our house, packed our belongings, and moved across the country. Even though it was better for him, and in turn, better for us as well (because I've experienced first hand - if a man's not happy at their job, it's hard for them not to bring it home), we sacrificed the "material" life we lived for a happier one. The crazy part about this is getting the surgeon I wanted from day one to implant Aiden. We were meant to be here. No doubt.
In our new place we're still going full force and have found a new team for Aiden. Aiden's "therapy" has become part of our life. We talk to him in AVT (auditory verbal therapy) and he's getting it.
I can't say that 2008 was a horrible year. It had definitely been a very stressful one; one which I shed A LOT of tears; one with a lot of questions "WHY?", especially after Aiden's diagnosis when I thought I was going to break. But Aiden made me keep on keeping on. He changed my world - Aiden that is, along with a lot of faith and realization that my world is so not perfect (thank goodness, cause then it'd be boring right?!?)
Now I look back at 2008 and yes, I will always remember this year as the year my dad passed away, but first I will remember it as the year Aiden was born ... actually, I'll probably remember them both right together. But that's okay. Can it truly be a horrible year when my third child was born? Aiden filled that "grandpa" emptiness inside us all and his deafness has taught us so much. He continues to amaze us and entertain us everyday. He is such a happy baby, always smiling, always entertaining, always so ... AIDEN!
EVERYBODY LOVES AIDEN!
He makes our hearts melt, makes us smile, makes us laugh, makes me just cherish every moment I get with him. I am so blessed that the Lord gave him to me! He changed my world in 2008 ... and that alone, makes life good.
The other side of that coffee cup says, "Do what you like, like what you do".
And I do. I'm home now, through financial sacrifices, with all of my kids. I take Aiden to his appointments during the day so they don't interfere with my older kid's schedules. I get to work with Aiden everyday teaching him to listen. I get to be home when my older "lovelies" go tp school and then come home and they're just loving it.
Yes. I like what I do.
YES, Life is Good!