This, in addition to a laptop that gets on my every last nerve with its turtle speed, and a pretty new desktop with a virus that needed restoring (but of course before I could do this, I had to save the hundreds of pictures and videos on it ... an all day task which turned into a forever task when you have a nonstop one year old! WHEW!) Therefore ... no recent blog updates!
The last couple of weeks have been a bit overwhelming. Despite lack of sleep on both our parts, (the boy is up at least two times a night, sometimes for hours at a time) he is a ball of energy. What happened to the day of playpens? He thinks the only way he can play with his toys is if we're entertaining him. And while I love all the language he gets with playtime, he needs to explore his toys on his own too ... in a limited area.
Then we add in the CIs. I was so excited to be done with the hearing aids. I thought it was the ear mold he hated and that's why he constantly tore them off. Nope. As with anything, there are good CI days and bad CI days.
- Good day = CI on most waking hours. Still working on keeping it on in the car and in the high chair. Pilot caps are not working as he just fights me tooth and nail. For a one year old, he is pretty strong, and in the end, usually wins. I need to go buy some wig tape to help the BTE (behind the ear/processor) piece stay on. Yesterday I did bend the bottom ear part around his ear lobe and into his ear a bit more, and this seemed to really help.
- Bad day = Mom following baby everywhere to consistently replace coil on head only to be ripped off and thrown by baby.
All in all, I believe Aiden truly loves to hear. He's responding more to voice and some environmental sounds. He's been responding to all Ling 6 Sounds , /m/, /ah/, /oo/, /sh/, /s/, /ee/, and is even imitating some of them (/ah/ and /mm/). Last night I was playing peek-a-boo with him and when I'd say "BOO" (covering my mouth with my hand), he'd cover his eyes and laugh. My heart melted and I couldn't get enough of it!
We're back to square one with our therapy. Here's what we're working on now.
- Distinguishing between long & short sounds - For example, "aaaahhhhh" vs. "eee-eee-eee".
- Turn taking - I've also call this the Power of Pause. When I make a sound, I'll wait for him to respond, then after he makes a noise, I'll make the sound again. This initiates taking turns.
- The /s/ sound - He doesn't respond as much to /s/ as he does the other lings. This is a high frequency sound and a little more boring. We use the teapot to imitate this. I pretend to pour the tea (while making the /s/ sound), then drink it (gulp, gulp, gulp) then "mmmmm" and rub my belly. He loves this!
- Face parts - Eyes, ears, nose, mouth ... face parts have great vowel sounds. We point out face parts on everything - in the books we read, on his toys, on us, on our cats. I'm just waiting for the day when I say a part and he actually points to it!
It is hard because Aiden was such a good hearing aid user and we were seeing a lot of this already, such as him imitating short and long sounds, turning to his name, babbling, vocalizing back and forth with us ... things I know we'll see again in time. Patience and hard work. I keep reminding myself of this. Patience and hard work. It will come.
We're also trying to find a good morning and nighttime routine. In a perfect world scenario, I'd love to be able to read him a book every night with his CI on, then lay him down for bed, but that's not working. He seems to need to have them off a bit to settle down and drink a bottle. I'd love to hear what others do.
So this is where we're at. Next Tuesday his left ear will be activated and I can't even imagine keeping two CIs on, but I am so excited to have them both turned on. It's what we wanted since day one. I'm praying that it's sooner than later that he WANTS to wear his CI's and starts realizing the difference with them on vs. off.
With all this said, I still wake up everyday with a smile on my face, as I put on his CI, knowing that they're the best gift we could ever give him! What a simply amazing journey we're on!
6 comments:
wow what an amazing story. I cannot wait for his 2nd ci to be activated. Good Luck
Oh, goodness! I can't imagine following the little guy around and replacing his coil all day. At least the earmolds give a little bit of resistance when they try to pull them out. And the only time I bless feedback is when an aid is whistling from its hiding place.
Good luck with getting better compliance- we're still fighting the aids at the age of 19 months.. I've been told two year olds are better at keeping them in. We can hope, right?
I'm sorry the pilot caps aren't working. It's crazy what will work for some and not others! The good news is that with 2 ears there isn't quite the pressure to get the ear back on ASAP b/c they still have the other one! Keep it up...before long he is going to understand that he has to have them on to hear, and he'll come to you asking for them to be put back on!
I have found, with Drew, that hearing is EXHAUSTING! When he was first activated he was sleeping sooooo much. I think this will kick in for Aiden more as the second ear is activated next week. When Drew was tired, keeping the ears on was very, very difficult. Other times, super easy. So, I started to look for the "pull my ears off constantly" behavior, and would immediatly nurse him and lay him down for a nap. He would take 2 naps a day (at 9 months old).
For bed time, we went into quite mode for nursing and to bed. We actually found that reading stories before bath worked best when he was first activated. We would read a story or two, have a bath, put his ear on while dressing him, say good night, nurse and then straight to bed. As Drew has gotten older we actually put one ear back on after bath and read a story with just that one ear, in order to make sure that he hears equally as well with each ear. It just seems to make sense and work for us.
Let me know if you have any other questions...hope this helps.
Thanks for the teapot idea! I'm going to try that one!
Wig tape works really well for us (along with the snugfit). Lucas leaves his processor alone pretty well, except when he's sleepy - they he pulls it off. Sometimes he does it in the high chair too (I can't figure out why though).
I've noticed that a booster seat on a chair works well for him, because his head is above the back of the seat, so the coil doesn't fall off. We now use the high chair much less.
I'm sorry to hear that Aiden is up so much at night! Lucas is not the best sleeper either, although we get a few nights a week where he sleeps through the night, and I'm always thankful for those. Our routine is: bath, bottle while getting changed, put the CI back on for books, turn lights off and cuddle for a few minutes (w/CI on) while I sing him a few lullabies (my biggest indulgence right now!!!!!)
Good luck with 2nd CI activation! I can't wait to read all about it!
Wow, you make me tired just reading about it! ha. Caden is also all over the place. The energy level is crazy! I am glad that he is responding so well! I will be praying for the second activation. Caden doesn't sleep all that much either but I just remind myself that it won't last forever. ha Miss and love ya'll!
Hope daddy doesn't write him a speeding ticket on that police motorcycle :)
Just reading that made me tired! I have an active (hearing) 22 month old (same name, different spelling) that never stops. I can't imagine all the extra work you must do to help him with the CI. Great story! Can't wait to hear how second activation goes, so I'm signing up to follow your adventures! ~ Michelle
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