Pimp My Hearing Aid / Cochlear Implant - another type of crafting.

There has been another type of crafting happening around here. Every month or so I settle in for a session of hearing aid / cochlear implant decorating. In the online community (mostly in the UK, since their healthcare system rarely allows for anything but flesh-toned hearing gear), they call this "pimping". It's pretty cool, and it exemplifies the feeling of owning one's hearing loss. Own it. This is me, don't ignore it, don't hide it. Love yourself. 

I hope that Allie always feels this way about her hearing gear. She has always had purple hearing aids, and now her CI processors are pink (Naida) and red (Neptune). She chooses a different color for her ear mold every time - for now it's hot pink. She gladly shows off her glittery and shiny "pimped" hearing aid and CI. 

Every month or so when it's time to refresh her look, Allie weighs in and tells me what color / what stickers / what gems. And after she goes to sleep I get to work. It really doesn't take long, and those tiny embroidery scissors help so much!

For now I'm glad that Allie is happy. She likes to pick out charms to hang from her hearing aid tube. She picks the rhinestones, and the tapes. (We've even had Hello Kitty tape!). 

These pictures show the hearing aids / CI decorated using washi tape (paper tape), plastic craft tape (marketed for teen crafting), stick-on rhinestones (from the scrapbooking isle). The hanging items are charms either for jewelry making, or for loom band crafts. I used small, sharp, embroidery scissors to trim around the edges. The main goal is to use a gentle, removable product - nothing permanent, nothing that requires acetone to remove. Don't cover any buttons or microphones. 

For more information please request acceptance on the facebook page Pimp My Hearing Aids / Cochlear Implants - UK.

Cochlear Implant Processor Pocket

I sew other things sometimes too.

T-shirt with zippered pocket on sleeve. Advanced Bionics Neptune Processor (red). 

Last month I added a pocket to the sleeve of my daughter's t-shirt. 

When a little girl wants to ride amusement park rides, the easiest thing to do is zip her cochlear implant processor into her pocket (leaving the headpiece / coil in place on her head). The processor is secure and she can still hear. 

So far this setup has done great for mild-moderate amusement park rides. Nothing has gone missing. Nothing has been broken. We've yet to give it the real test (roller coasters!!). Since sometimes six year olds can waver in their desire to ride (she loooooooved them last year, but is more nervous about it this year). Either way the zip pocket adds a bit more security and piece of mind. 

Allie gets her cochlear implant.

Tomorrow (Tuesday) Allie will have Cochlear Implant surgery. We've been working up to this point for several months now, and the day is finally here! 

Here's a bit about our story. Allie was born with bilateral hearing loss, but has always had enough gain from her hearing aids to get by. She went through early intervention therapy and tons of speech etc. But the thing is, having enough hearing to get by isn't enough. Can you imagine having to work to understand every word? I've seen it so often, that I think I can imagine it. I don't like that. 

Getting by isn't enough. Allie's hearing has dipped a bit in the past year due to a series of ear infections. We responded initially by switching her to more powerful hearing aids. These hearing aids give as much amplification as is possible (without causing hearing loss), but it's just not cutting it. We've seen Allie struggle and fight to understand. She works hard. She's so very bright. But there's that struggle. Hearing shouldn't be such hard work. We started considering cochlear implants last summer when Allie flipped out at an appointment with her ENT (cleaning out the ears, no fun). This kind of behavior is fairly normal for Allie, though we've gotten much better at handling / preventing it. Her ENT (Dr Young) looked at me and suggested that this behavior is hearing related. She thinks that Allie's regular behavior problems are a result of spending more energy than normal focusing on hearing. 

So began our journey. After testing with the CI audiologists we see that in silence (as a normal audiology booth test) Allie has an accuracy rate of about 60%, she understands about 60% of what she hears with her hearing aids - in a silent room. But adding just a tiny bit of background noise (equivalent to maybe having your car air conditioning turned on halfway), and that accuracy drops to 30%. So in a normal, everyday setting Allie is catching about 1/3 of what we're saying. Great. No wonder we're having power struggles constantly!

SO - many appointments later and here we are. Allie is excited and nervous. Mostly she's nervous about the surgery / post surgery recovery. She's excited to be able to hear better, and she's MOST excited to go swimming! She'll have a sound processor that is waterproof - which means she can go swimming without getting in trouble for not following the rules. 

Allie has always been in the hearing world. She received her first hearing aids as an infant, and from the first day she loved them. She took to the hearing immediately. We didn't know what to expect, but she astounded us. I can only hope that she'll love her cochlear implant just as much. For now though, we'll handle the recovery. 

More about Allie's hearing story can be found here, here, and here.

Soon there will be a CI processor here instead of a hearing aid! 

Small projects -- Yep, I'm still sewing!

Some of my projects for the #HogwartsSwap I love all of these things so much!

I'm not one to mention how absent from my blog I've been -- I have been -- but I try not to spend time whining about it. I blog for myself... and I wish I had more time to devote to it. If you're wondering though, I HAVE been blogging an awful lot recently... over on the Chicago MQG blog. I've been the tech/blog/forum officer for the past two years, and it's been a time hog here recently. I love helping with my guild, but I'm looking forward to next spring when I'll be back to just managing my own blog! 

A little binding action. 

Another factor in my lack of blogging, has been that I have been working on some projects I can't share just yet. These are mostly projects for magazines. It is still pretty unreal to be preparing projects for a publication. I'm really happy about this step in my professional sewing. I really love writing up patterns and I'm hoping to branch into publishing a couple quilt patterns. I'm pressing myself to grow. I don't want to play it safe all the time. It's fun and exhilarating to try something new and challenging! 

Happy Halloween! Simple raw edge applique pillow using Pellon Wonder Under! - This fabric glows in the dark!

So though, many of my recent projects are not ready to be shared just yet, there are some fun sewn items I've been working on here and there. 

A tiny finish. Voile is amazing. Machine binding is my friend.

For the most part these smaller projects are getting posted to Instagram (@mommysnaptime) - but for the less tech savvy I'll share them here too. 

In case you wondered, the best two books I've found about Cochlear Implants (and I've read a ton of them): "The Parents' Guide to Cochlear Implants" by Patricia Chute, and "Let's Hear It For Almigal"by Wendy Kupfer.

Oh yeah. This is happening too -- Allie is getting a Cochlear Implant soon! We're super excited / a little nervous. I think it's going to be a great thing for her. Also, she is EXCITED that her processor will be waterproof. She can't wait to be able to hear while at the pool!!!!!