Filed Under (Activation) by Kel on 17-02-2009

So after the past 2 days, I’ve decided there is a reason that the people around us are trained professionals and I am not: short of the 2 minutes of video I posted, I saw next to nothing in the past two days’ appointments, each over an hour long. They say he can hear. They say he’s listening. He has 3 programs of sound. I see … nada.

They say he’s doing all these phenomenal things, he’s responding so well, and then I go home and see him do almost nothing and am left wondering what the catch is. He did respond once to Daddy clapping this morning (yay!). It’s a start on a long, slow road. I’m left trying to find patience to see something, anything to validate our decision to get cochlear implants. He goes to daycare, they play with tambourines, he doesn’t respond, and they all look at me apprehensively. Are they working? Does he do anything at home?

At home he sleeps, thanks. 6:30 last night he fell asleep, and he woke up at 5 the next morning. I guess that’s a sign he’s doing something, if he’s so exhausted, right?

Above all of that, though, it’s still pretty awesome. Those moments yesterday and today where I could see something were incredible. I feel so lucky to live in a time where this is possible. A coworker watches the video and comes out of his office with tears in his eyes because he is so amazed and thankful for the gift we’ve been given … it’s humbling, how many people are traveling this journey with us.

I just wish he’d give me some sign we aren’t doing something wrong! The weight of the responsibility we have gladly accepted is on me today, as he wears his implants and sits with Daddy on the floor. Every moment feels like a moment squandered, and yet I can only go on so long without him responding before I need a break. It is our job to make sound meaningful, so he doesn’t just tune it out. How can we do that?

What if we fail to make it meaningful enough, and he tunes it all out?

Can he DO that?

     

 

Comments

karen on 17 February, 2009 at 7:58 pm #

You will do it because you have tons of help, people that will lift you up when you need the help,people who will be there when you need a smile , a hug, a little sentence or two from someone who has gone ahead of you with this and knows from experience the path you and Danny are going down right now. It will take time, he has lot of processing to do right now, be patient kiddo, I know that this is not one of your strong points, but wait you must. It will be ok, it will be worth it , every song you sing to him, every story you read to him, every little bubble of noise that comes his way has now got to be sorted out and understood, stop….take a deep breath, enjoy watching him learn, learn along with him, this is the part of the journey to be shared and enjoyed, this is truly one of those times where the journey is more important than the destination.Have fun OK, and please relax , you are doing great.Thanks for all the updates and the photos, it takes us along with you and we wouldn’t miss this for the world. Love to all of you, Mom


Hope on 17 February, 2009 at 8:58 pm #

Don’t lose hope, Kel! Danny will progress, I promise. He’s been through a lot, give him some time. I guarentee he will surpass your expectations. Relax and enjoy the journey, Kel. I know Danny is!


Jess on 17 February, 2009 at 10:25 pm #

Hun, give his neurons time to grow new pathways. ;)

*hugs*


Nat on 18 February, 2009 at 6:19 am #

I’m sorry sweetie, I can only imagine how freaking frustrating this must be. I hope you start seeing something amazing soon, just to give you some ideas of what will happen down the road.


Drew's Mom on 18 February, 2009 at 6:28 am #

It is frustrating, because you want them to respond to everything! Give it time. His little brain is trying to figure out what to do with all this sound, and some of it is still too soft for him to hear.

The fact that he is tried tells me that he is getting some sound! Hearing is exhausting for these little guys. Drew sleeps nearly 15 hours a day – still – at 2+ years of age. He loves to hear, but it is exhausting!

Try this…make the room really, really quite. Take a drum and sit directly behind him. Have your husband sit in from of him, really close, and occupy his attention. Then you bang the drum. A drum is very low frequency, and loud, and usually they are able to hear it well, right away. I think it will give you peace of mind. This is the first reaction we really saw for Drew, and there were lots of tears. Then, for the first couple of weeks, there were subtle examples – crying when Daddy talked really loud, etc. But all of the times we noticed a reaction was during a period where the room was extremely quite and we introduced a sound. These kids have to learn presence and absence of sound, so the noise has to be something that would really entice a reaction.

OK, sorry, that comment turned really long! :)


Kel on 18 February, 2009 at 8:34 am #

I like long comments, especially with helpful ideas! Thank you. I think I may need to find a drum. (Oh gosh, Eric is going to go nuts with it!)


karen on 18 February, 2009 at 10:02 pm #

Hi kiddo, mom here again, I was thinking also that a little piano keyboard that he can plunk around on would help him too. I use this at work sometimes when I am testing kids that maybe have a hearing loss.It is amazing what they can tell you by just playing with a piano keyboard , the pitches that they hear or don’t hear, and it also gives the hand eye thing some practice, and also it makes the child feel that thy have some control which makes them want to keep discovering noises for themselves, because it was their little hands that made the noise happen. Just a thought, maybe it will help. Have fun, love mom


Heather on 19 February, 2009 at 3:12 pm #

I know it’s impossible because you’re the mom… but don’t worry. You won’t fail him. He was given to YOU for a reason.


Drew's Mom on 20 February, 2009 at 6:15 pm #

Oh, one more thing I was thinking about…a reaction can be anything from an actual startle respose, to searching for a sound, to blinking of eyes, stopping the sucking on a pacifer/bottle, etc. Drew’s key reaction to sound – his breathing! When he would hear a sound, his breathing would become very, very heavy. So, look for more than just the typical response. My guess, from your posts on how much he is sleeping, he is hearing, he’s just fooling you, and he needs to learn what to do with the sound. It will come.


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