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Friday, May 4, 2012

Post Activation- Week 1

I apologize that it has taken me all week to send updates! Saturday morning we had big plans to go cheer on Blair while he ran in the Festival International 5K downtown, but when we went to put the processors on H's head, it was almost as though we were putting them on again for the very first time. We were aware that this may happen, but he was very upset, so he and I stayed home instead of trying to take on a crowd. He just sat in my lap with his head buried in my chest. Every once in a while he would look up at me and start crying and then bury his head in my chest again. I just kept rubbing his back and telling him that he was going a great job and that everything was just fine. Poor baby was obviously scared, but after about 20 minutes of laying on mommy, he was ready to take on the day! Here is a picture from Saturday. He was very much more into his musical toys.

Our weekend went well, it was not bad because Blair and I were always on top of his processors in case they happen to fall off while rolling or playing on his back. Now the sitter's house on Monday was a different story. She said they were constantly falling off and that she was going to call the other mom of the girl who used to go there who also had a CI and get something that might help. It's called a huggie aid and this is a picture of one Blair took when they let us borrow her old ones.

Rather than using the snug fit provided by Cochlear, which wasn't keeping them on as well, we decided to try and use this one, and I think we have found a winner and will be ordering more of them in the near future. It wraps right around his ear and keeps it on a lot better.

Another issue we were having was the magnet was constantly coming off. There are different strengths that the magnets come in, and they range from a 1/2 to 6. Our audiologist at Ochsner's sent us home with a 1 because she seemed to think it was a good fit. He wasn't very active while we were there for the inital fitting, or else I think she would have realized that the 1 was not going to be strong enough. Even with the different strengths, you can loosen and tighten the magnets. She did inform us that if the magnet is too strong, it can produce a red ring on his head and if it gets really bad, it can start to pull on the inner magnet and the skin would get infected. This has caused some CI recipients to have to be reimplanted. Well this scared us enough to not even want to tighten the size 1 magnet, but it simply would not stay on, even when he would shake his head. Blair did lots of research this week to see where we can get more huggie aids how to really tell if the magnet was too tight on his head. An audiologist at Cochlear told him that we would see scabbing if it got infected but I don't think we would let it get that far! 

When we went to see our AV (Auditory Verbal) therapist on Wednesday, she said it definitely should not be coming off just due to the wire hitting the back of his shirt, or things of that nature. So we have tightened the size 1, and we now got a size 2 to try. Last night when we were putting Hunter to bed, I have to say that I did notice a very small red ring (about the size of the magnet) on one side of his head. Blair wants to try the size 2 strength, not tighten it to be closer to his head, and see if we see anything. Don't be alarmed though, it was not like blaring red or anything.

But back to our first post activation AV appointment on Wednesday, we absolutely LOVED it! Besides the drive there which was accompanied by a storm, all went well. I think Hunter REALLY liked Shelley, and I think he did very well for his first appointment. She is going to be driving this bus of a journey we have ahead of us, and we will see her every Wednesday afternoon in BR. She told us our approach from now on should be "Tell then show" instead of "Show then tell". In other words, she had a drum that she would bang underneath the table. She would see if Hunter was acknowledging that he heard anything, and then she would show him that the noise he was hearing was coming from the drum that she was banging underneath the table.

(On a side note, if you notice from the picture above, we have also started dressing him with a sleeveless white onesie underneath his clothes, which we have the battery packs clipped to. We just slip them under his shirt and that way the wires aren't exposed and visible to yank at. We are hoping to possibly get some pockets sewn in, as we saw from Landon's mom, but for now this seems to be working!)

She did the same thing with a few farm animals. She would hold a small rubber ducky in her hands without showing him what it was, and she would say "quack quack" and then we would all say it so Hunter could see the noise was coming from all of us, and then she would show him that it was the rubber ducky. Nini, the sitter, had already been working on the duck and the sheep ("baaaah") so those were the two we started with. We also added cow to the mix.

She said our goal over the next week is to notice that Hunter acknowledges sound 5 times before we go back. She also informed us that he needs to start showing us that he knows his name, so we have been working on that as well. By the end he was on all fours on the table and throwing the cars in between his legs!

Last night we had occupational therapy and we are still working on Hunter just being comfortable with standing up. He is still very wobbly while he is on his feet. During our Early Steps meeting last week, one of our goal we listed out was to get Hunter to play more independently, rather than having to be able to see one of us while doing anything. One suggestion was to set up a pack and play, put him and some toys in there and let him go to town playing by himself. I set one up in the kitchen one night while I was cooking and it worked out well. He knew I was still next to him, but I didn't have to entertain him. He mostly like to be standing while in the pack and play anyway, so this gives him extra time on his feet, which he needs to get more comfortable with. Next weekend marks his 14 month birthday, and we would like to start seeing major progress with his standing. Our OT thinks he's just gonna get up and walk one day just like he all of a sudden started crawling, but everything we do with him needs to involve standing while playing so he can get more accustomed to it and actually want to be on his feet.

I see now why I haven't had time to post all week... that was a lot of information in just the past 5 days to dish out!

Have a great weekend everyone, mommy will be on a bachelorette party with the girls, so it's just H and Daddy all weekend! Here's to the most amazing and involved daddy I know :) I love you both to the moon and back!


  1. Thanks for sharing your story. My son Logan will be getting a CI when he turns 1 at the end of June so it is nice to follow someone who is going through this too.

  2. Love the picture of him on all 4's on the table--he is just too cute :) I saw your post on the cicircle and just wanted to let you know Landon uses number 2 magnets, too, so don't worry about going up. We came home from his activation with 1's but by the time we went back the next time she swapped them out for 2's because they were doing the same thing--he'd turn his head and they would fall off. From the pics it looks like Hunter's cable is pretty short so I wouldn't think it was that. Just start with it as far out as possible and go from there. We have to adjust Landon's every couple of just depends on his hair. When it's getting close to time for a haircut they start falling off more so we have to tighten them until he gets it cut. Right after a haircut we usually have to back them out a bit or they cause a red mark on his head. It's never been a really big issue for us though, just something to keep an eye on :)