Friday, September 28, 2012

7 Quick Takes: Oh Yeah

1. As a result of Gianna and Pia's story going mini-viral (thanks Jennifer Fulwiler of Conversion Diary!) I was asked to write a real article for a real magazine. Then, they sent me monies. 20 of them, in cheque form.

2. When I flaunted my wages in front of Brad and told him I probably needed my own top-of-the-line laptop and a business suit from Ann Taylor he said, "Well. You're a top earner now."

3. I'm going to try not to let my fame and fortune go to my head. You know what they say, "Mo' money, mo' problems." 

4. Work out videos are really, really lame. That is why I've been religiously working out to the 30 Day Shred with Jillian Michaels. I am pleased with the results thus far, but my main problem is that I've been using two cans of Trader Joe's Diced Fire Roasted Tomatoes (with organic green chiles) as my weights and they are slated for use in tonight's dinner. Do I actually go purchase real weights or get creative? Currently my pantry contains a single can of green olives, so I need to move beyond food products.

5. Dominic insists that Pia is a boy. I'm not doing much to dissuade him because arguing with an almost-three-year-old is the worst. Plus, it's kinda funny.

6. I saw the best thing while grocery shopping at Kroger the other day. In the produce section there was a Muslim woman wearing a hijab and talking on a smart phone. But wait, there's more. She was talking on it hands-free and it's not because she had some sort of Bluetooth deal going on. No, she had her phone TUCKED INTO the side of her hijab. It was awesome.

7. Lastly, I leave you with this

Have a v. nice weekend and check out more Quick Takes at Conversion Diary

Wednesday, September 26, 2012

The Way It's All Going To Go Down

 Allow me to introduce you to my friend, the Familiar Sounds Audiogram. This is a good illustration about how loud and soft life can be, and is also helpful for explaining the benefits of hearing aids versus cochlear implants.

The first thing you'll notice about the audiogram is that pinkish blotch near the top. This is commonly referred to as the "speech banana." In order to hear and reproduce speech, an individual must be able to hear within both this decible and frequency level. In order to over-simplify, decibles can be thought of as how loud or soft a sound is, and frequency is  how high or low a sound is.

The auditory-brainstem response test (ABR) is only able to test sounds up to a certain decible level, usually around 90 to 100 dBs. This is why both Gianna and Pia's ABR's were blank, they MIGHT be able to hear very, very loud sounds (like an airplane or jackhammer if they were very close to those things) but we are not sure. The first step in seeing the full extent of the hearing loss is to use hearing aids and put the kids in a sound booth to do a behavioral test. Sounds are played and any responses to the sounds are rewarded with a visual cue.

For Gianna, and likely Pia as well, hearing aids did not show much benefit. I think I remember Gianna's aided audiogram said that she could hear somewhere in the 70-80 dB range. Not near enough sound to perceive and learn speech. When Pia is around 6 months old we will be able to put her in the sound booth and get a better idea of how much residual hearing she has, but the fact that her ABR was non-responive, it is highly unlikely hearing aids will allow her to speak and listen.

This brings me to the difference between a hearing aid and a cochlear implant, beyond the obvious difference that one is surgically implanted and the other is not. A hearing aid amplifies sound. A cochlear implant functions like a bionic ear.

So, sound enters through the external processor (worn behind the ear..."BTE") and is somehow converted to digital information. Don't ask me how because I have no clue. The sound jumps the magnet into the implant and travels down into the electrode array that is inserted into the cochlea. Normally, the hair cells in the cochlea stimulate the auditory nerve, but for Gianna, her hair cells do not work or are not present. With the implant, those electrodes act as hair cells to stimulate the auditory nerve, which then carries the information to the brain. A typical cochlea has thousands of hair cells; Gianna (and Pia eventually) will have 24 electrodes to stand in for those hair cells. This is why things like music sound very different to a cochlear implant recipient.

Following surgery and a recovery period of about two weeks, recipients have their devices activated for the first time. Then comes the work. There's speech therapy to help with speech production, aural rehabilitation (teaching the child what sound is and that it has meaning), auditory training to learn how to use the implants to listen, building auditory memory, and frequent visits to the audiologist for MAPings (the term for programming a cochlear implant to the specifications and needs of its user.) MAPs can be rough's voice sounded one way, but one tweak of the computer can make it sound another.

If you are still with me through all the explaining, here is the pay-off

I love that Gianna has outed all our recent TV due to the presence-of-a-newborn extravaganza we're currently working here. Anyways, the FDA requires a minimum of three months with hearing aids to show all other means have been attempted before proceeding with the invasive cochlear implant surgery. As mentioned, we will go at 6 months to get a new audiogram and begin documenting officially whether they are beneficial to Pia or not.

In the meantime we'll be back every few weeks to the audiologist to get new ear molds because Pia's ears will be growing so quickly. Additionally, I'm hoping some sound is getting to her in order to keep her auditory nerve nice and strong as well as keeping activation day from being extremely upsetting for her.

THE BIG FAT DISCLAIMER: I'm not an audiologist, otolaryngologist, speech pathologist, or speech therapist. I just have two Deaf kids. Each child has varying outcomes with cochlear implants due to factors such as health of the auditory nerve, shape of the cochlea, age of implantation, type of therapies received, and cognitive abilities.

It might seem like we know what we're doing, but we're mostly just making it up as we go along, cuz that's how we roll.

Tuesday, September 25, 2012

Round Two

Sweet sweet Pia got her hearing aids today. She was not impressed. I'm sure they feel very awkward in her tiny ears.

 Our audiologist gave us a thoughtful gift of a pilot cap, apparently all the rage with parents of little guys with hearing aids. These hats keep curious fingers from pulling out the hearing aids while keeping bald baby heads warm without causing that super-annoying feedback ringing noise.

I'm feeling like it needs....something....cute. I might dust off a crochet hook and make a little flower to add to it. In all my spare time of course.


cutest, tiniest, ear canals ever in evidence
I am very certain, and our audiologist agrees, that Pia cannot hear my voice with the hearing aids and probably not much of anything else, so we are slated for cochlear implant surgery next summer. That gives me a nice, long time to freak out about anesthesia risks, etc. Meanwhile we are signing to her and I love to see her eyes watching my hands and face so intently. This baby is such a gift.

Pumpkin spice lattes, cool fall days, sweaters, and some hearing aids with sparkly, purple ear molds: sign. me. up.

UPDATE: Tomorrow I will write a post explaining a little more in-depth about the cochlear implant process...I'll try not to make it boring while still being incredibly informational. Such suspense...

Thursday, September 13, 2012

Operation Contain and Placate: Addendum

You have heard it said that thou shalt bring your small children to the grocery store to be a light to the world, but Amen Amen I say to you, don't. If it can be avoided. Just don't.

But if you have to, let's talk shall we? I have written to you previously about how to have a (mostly) successful and pain free trip to the grocery store. Additionally, I have instructed you in ways to look crazy when at the grocery store. And now, I shall add a few thoughts on taking THREE small children to the grocery store. Alone.

You could try to be well-rested and well-fed but chances are, if you are desperate enough to bring three small people to the store, neither the latter nor the former is likely. So, here is my new trick. Kid Clif bars all around. Stuff the wrappers into your wallet so you won't lose them or forget to pay for these already-consumed goods. It doesn't look weird or suspicious at all......promise.

You still need to park near the shopping carts. You'll still be strapping a kid in there (the 'runner' of your group.) Strap the newborn to your person, inform the walking child they must keep their hand on the cart unless told otherwise, and away you go.

No longer will you wait in line at the deli. You must keep moving. Instead, use the little deli-station computer and order your meat the moment you walk in the door. Do the rest of the shopping and score the meat at the end. 

You still get the free cookie. Except now you must also get the free balloons. No one will be actually IN the floral department to mete out such rewards, so you'll have to trudge to the customer service counter, at which point they will page someone on the loudspeaker, and that someone will come to the floral department expecting you to spend some legitimate money. Instead you will feel like the lamest person alive when all you do is request 2 free balloons.

Do you have a child who dependably releases the balloon almost immediately upon receiving this most-coveted prize? Tie the balloon on to the shopping cart in such a fashion that it will take you 7 minutes and a lot of almost-swearing to un-tie it once you get yourself, children, and groceries out to the parking lot. No worries though. You are MacGuyver-like in your skills, and you will use your keys to slice free the balloon. Problem solved.

You can still engage the help of your mobile youngsters, but when they break open a bag of baby carrots because they missed the cart completely when tossing it is time to leave.

Are you frightened? Don't be. They can sense your fear. You can do this. If all else fails, take this little exchange to heart:
"Excuse me," said a woman who looked like the last person to be amused by my little brood.
"Oh, I am so sorry," Saith I. "I didn't realize was blocking the produce bags."
 "You're fine. Anyone who is brave enough to bring three small children to the grocery store can stand wherever they want."

It might become my new mantra.

Friday, September 7, 2012

7 Quick Takes

1. Thank you for all the love and support and prayers showered on us yesterday. I cannot begin to express how grateful I am. People keep saying we clearly know what we are doing....I'm glad I have you all fooled :)

2. For those who visited here yesterday and would like to learn more about our experience with hearing loss thus far, here are a series of posts I wrote regarding our journey with Gianna:
Is She Deaf?
In the Beginning, There was Silence 
Two Years of Sound
The Beginning of Charity

3. I kinda wish all those links could count as a separate take....I guess I could make that call, since I'm the boss here. Hm.

4. When it's 100 degrees outside and I make a casual comment such as, "It's hot out here." Dominic's response is always a vehement, "It's NOT!" 

5. Due to the above mentioned negativity, some extreme reverse psycology is needed to enlist any sort of cooperation from him. The problem is that I am slightly tired all the time and definitely still in the postpartum haze and rarely succeed in the cooperation department and always succeed in confusing myself. 'Did I want him in the car right now or not? What are we doing right now? Am I serving ice cream for dinner or not?'

6. I am anxiously awaiting the arrival of my new pair of running shoes. Oh. man. I went with the Ultramarine/Mulberry color....don't they look FAST?

7. Currently, our "next steps" include taking impressions for the hearing aid molds (happening Tuesday) and meeting with our ENT to discuss....I dunno. ENT stuff. That's next Friday. Mostly, I am excited to get G from school and boogie over to the Chik-fil-A for an early dinner with my crew and some energy-sapping time in the play area before I bring the whole show to the doctor. You might wonder, are we bigots for eating Chik-fil-A, or do we just know a good milkshake when we see one?? You decide 2012.

Have a fab weekend...check out more Quick Takes at Conversion Diary. Adios!

Thursday, September 6, 2012

Deaf Like Me

I took sweet Pia for her obligatory Auditory Brain-stem Response test yesterday morning.

Before the test, I had an inkling of how it might turn out....I'd been thinking, off and on, since the morning she was born, "I don't know if she hears me."

It was the way she didn't seem to smile at me or coo at me, or respond to my voice coupled with a dull anxiety that "something is not quite right." The same things I felt about Gianna, and opposite of my experience with Dominic.

I wasn't that shocked, then, when the audioligist said, "I'm sorry to tell you....she's not responding." It's funny, what goes through your head in a moment like that.
I thought I only had one more year of driving to Loveland everyday.
How will I tell Brad? He didn't suspect at all...I should have prepared him better.
Dangit. Probably not getting a Suburban...gas mileage is a biotch.
I can't wait to tell Gianna. She is going to be so excited.

It was a day of many emotions. I look at Gianna now and see how happy she is, and how well she is doing, and I don't feel afraid. But then I remember how much work was involved to get here....the appointments and paper work and surgery and researching and worry. Some of that will be different this time, because we've already been in this place. But a lot will be new. I've never had an infant with hearing aids, I've never walked this journey from the beginning; Gianna was 14 months old when she was officially diagnosed with a profound hearing loss.

For the moment we are soaking it all in and dusting off our ASL. I feel very strongly that I want to communicate right now with Pia and I don't want to wait until we get amplification straightened out. When I picked G up from school I gave her the news and her face lit up. "Really?? REALLY??? Deaf like me??!! I will show her how to go to my school, will she get implants like me?"

Gianna was the person I wanted to share the news with the most; I knew the only reaction I would get from her would be unmitigated joy. She doesn't see herself as having a disability. Her Deafness is a fact to her in the same way she would say, "I am a girl. I am in kindergarten." It is not a negative. And it's with that spirit that I'd like to state, "Pia Catherine is a girl. She is 7 weeks old. She is Deaf."

This morning, Gianna was laying on my bed with Pia and Brad walked in to see Gianna with her magnets pulled off, signing happily. Brad asked her if she took her ears off on purpose and Gianna smiled shyly and explained," we can be the same."