Monday, 9 January 2012

Tips: Pre- & post- operation

A nice comment in the previous post.
From parents whose child will have bilateral CI (the standard in Norway)  in February. In the comment, the request for more tips "pre- and post- operation..
Brings back memories... but with memories the problem is.... It fades...

So, first advice would be to start recording on paper, computer, video what happens NOW. Don't wait with it. Any progress after the CI has been implanted and activated is relative to the current situation..With "hearing" being the change, I would advice to make lots of video recordings of your child with how she is behaving now. the way she communicates now. Do you and your child use signs? Catch them on video. In the near future you might no longer be using them.
Lotte used to make loud, high pitch noises when being happy. Really annoying for people around (we were once asked in a restaurant to do something about that, but we couldn't..). I don't recall having a video of it, so the sound is lost forever. Wish I would have started a blog at that time, capturing that period, but I started this blog after he had the CI. earlier posts were from things we wrote down before the blog...

With that, you have the second advice. Don't just write it down, but organize it. In a website, a blog, a folder... So that you have access to it. Nowadays it's made so easy with all the blogging sides around.. Any picture and video can be uploaded and be part of your journey with your daughter. And not just for you. Also for your family and for other people that are in the same situation.
Like this blog. Essentially it's for us now and for Lotte later in life but the more people enjoy it the better... The good thing about the blog is that especially video is actually accessible. Many videos are on tapes, and we haven't seen them in years. Stored in some dark corner of the house after the video player broke down. Had they been on a blog, we would have had more possibilities to look back.

Third advice is regarding the time after activation. We didn't take the advice to stop using signs with Lotte. We refused to stop communicating with signs but used then together with sounds/words. We used the skills she had to teach her to hear and listen. It takes a while for the brain to realize the new input. Using sounds is of course essential, but we always accompanied them with the signs where possible. It didn't take long before Lotte herself would drop signs and use sounds only... Of course there has to be progress. When you keep using sign consistently there's less incentive for the brain to start learning to hear, listen.. The main reason one chooses CI is to give the ability to use speech as a way of communication.. That needs to be the overall goal..

Fourth advice would be to get in touch with other parents in the same situation. Easiest is via the internet. The yahoo group "CIcircle" for example (Now website is great for that. Lots of people sharing their thoughts and giving advice. A great place to start. But there are many other message boards that do the same thing. a search on the www will reveal them.Of course there are many other blogs like this one, with children in different periods of their CI journey. There are many listed in Lotte's link on the side, and any blog will have links to other previously unknown blogs..

Fifth advice would be to talk a lot and read (aloud)a lot to your child. Lotte had never heard so every sound was new. Like with all new input.. one needs to experience is before one can use it. Learning a new language one would listen to it before starting to use it. I don't recall the numbers but a words needs to be heard 100's of times before a child will start using it.. So... Speak a lot. Just babble along. It all needs to go into the brain before anything comes out...

Six... Lotte was the second baby to have bilateral CI in 1 operation (the first with Cochlear Freedom). Carrying 2 bodywork processors would be ridiculous for a toddler, so instead the BTE's were used. They were too big to be carried on the little ears so they were put in little bags on her shoulders. This worked out so well for Lotte and for us that we have use this solution for a long time. It gave freedom to Lotte, since she would never be bothered by the heavy BTE's behind the ears (with other children sometimes hold in place with wig tape, or earplugs) and we never had to worry about losing them. (Lotte would not notice sometimes that the coil would fall off... Especially when caught up in playing..)
I'm not saying that one needs to use this system. I'm just saying that we used what worked for us. We were pushed to put the BTE's on Lotte's ears, but when we asked them "why?" there was never a clear answer. Most parents had the BTE's on the ears of their child, and it worked... We were the exception..

Seven.. Pre-operation... Lotte came out of the operation without problems. Not living in Oslo we had to stay in the hospital for some days. Very exhausting with a child that feels fine and wants to play.. Make sure there's enough to do. For the child and especially for you. (writing a blog perhaps...)
There must be more, and actually, I recall that on the messageboards there are better answers that this one..I will add some links when I find them... and I hope other people will comment with their advise so I can copy them into this post..
AH,, just remember something:

Eight: ... difficult as it is.. try to become experts. Those annoying parents that ask too much information to the doctors... Read & Ask.. In time you will become experts on CI for your child.. You WILL know better than the medical staff helping you. And you will notice that some people have no clue... and that's OK. The medical staff doesn't have a child at home with CI. You don't have the medical training for the details... In the end, you can tell THEM a lot about children with CI..We did this with the way we had Lotte's BTE's in the pouches.. We knew it worked. She had no problem hearing and learning to speak, and the medical staff couldn't explain why they needed to be on the ears... so... they stayed on the shoulder because WE knew it worked for Lote and for us..

No comments:

(Some) Milestones

  • 2013-08: Grade 6
  • 2012-08: Grade 5
  • 2011-08: Grade 4
  • 2011-03: BTE's on the ear
  • 2010-08: Grade 3
  • 2009-08: Grade 2
  • 2008-08: Mainstream School (6y. old)
  • 2006-10: All-hearing Kindergarten (4y. old)
  • 2004-11-22: CI activated (27 m. old)
  • 2004-10-04: Bi-lateral CI (26 m. old)
  • 2003-08: Deaf/HOH/CI Pre-school/"DEAF" Kindergarten (12m. old)
  • 2003-07: HA's fitted (11 m. old)
  • 2003-06: Diagnosed deaf. Start sign-language (10m. old)
  • 2002-11: Suspicion loss of hearing (4 m. old)
  • 2002-08: Born - A fierce LION
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