Hearing Test Results

John here - just wanted to let everyone know that the test went well and Becca had no issues with the anesthesia. The results came back normal, which means that Becca does not have hearing loss. It is very good to get a definitive answer to that question. So, no hearing aids - yay!

Update

Becca's test has been delayed 4 hours because some goober in the pre-op clinic told me that all juices counted as clear liquids, even though, I now know, only apple juice does. Oops. They also told the family that was scheduled before us the same thing...so they were also delayed due to orange juice. Ugh. The good thing is that our fabulous audiologist is willing to wait with us and will still run the test today, even though she otherwise would have gotten to go home early because of the snow. Thank goodness! Their next opening wasn't until March, and I am NOT willing to wait that long! Becca is doing great, considering that she hasn't eaten since last night (except those two sips of [non-clear] V8 juice this morning). She did get some [clear] apple juice until a hour ago, so that helped. She has been signing, "More, please," all day, especially this morning. Very funny. And cute. And pitiful.

So, I'll try to post with results as soon as I can!

Hearing Test Eve

Tomorrow's the big day! Becca will have her ABR (auditory brainstem response) test tomorrow morning at 11:30. It should be done by 1, and we'll know results right away. I'll post as soon as I can. (Remember, she'll have to wake up from sedation and everything, so it may take a while.) If you are the praying kind, we'd appreciate your prayers for her safety, since general anesthesia always carries some risks (though she had no problem a year ago at her last surgery) and for clarity in the results. We feel confident that we can handle whatever diagnosis comes our way tomorrow, but we really, really want some answers. (You may have picked up on that one.)

Oh, and our favorite audiologist is the one running the test! Hooray!

I'll be in touch!

Big Girl?

Is it just me, or is Becca looking really old these days? She's definitely lost the baby look. She's also getting tall (relatively speaking). For the first time I'm having to start bumping up a size (to 6-9 months) because of her length instead of her pudge.

Don't worry, Itty Bitty, you are still as cute as ever!

And how about these sleeping beauties? They'll never admit that they like each other...but we know better. There are few sights cuter than puppies sleeping in piles.

The Big Reveal

I mentioned the other day that I have a new venture in the works...and it's ribbon-cutting time!

I am thrilled to announce that I am opening a bookstore! Welcome to the grand opening of Itty Bitty Books! Of course I'm not actually opening a brick-and-mortar bookstore, but I've found the next best thing. I am a new independent consultant for Usborne Books & More, the publisher of Usborne and Kane-Miller books. It's a bookstore that I will be able to run from home, while juggling all of Becca's needs. Hopefully I'll be able to contribute to our family's finances while still having plenty of play, cuddle, and therapy time with our Itty Bitty...and I get to help my friends and family provide these awesome books to the kids in their lives.

Usborne books really are great. When Becca's occupational therapist asked me what Becca's favorite toys are, I realized that they are not the fancy electronic light-up ones, but are (aside from every door in our house!) her books. She particularly loves her Usborne Touchy-Feely books in the "That's Not My..." series. We've got "That's Not My Puppy," "That's Not My Fairy," "That's Not My Penguin," "That's Not My Monster," "That's Not My Monkey," and "That's Not My Princess," and that's not all of them! She loves feeling each of the different textures, and her therapists agree that it's great for her (and any small child). In addition to the Touchy-Feely books, Usborne has some really interesting fiction and non-fiction titles that inspire curiosity and a love of reading and learning. There's an entire section on the site for pirate books! How fun is that?

The Kane-Miller line includes stories from around the world, introducing kids (and their caregivers!) to different cultures while engaging them in a compelling story. They teach kids that we live in a world that is big and small in which our differences and our similarities ought to be celebrated. Not to mention that the perennial favorites Everybody Poops and The Gas We Pass are Kane-Miller books! (Turns out they are from Japan - I never knew!)

Anyway, as you can tell, I'm really excited about this opportunity. I get to play with kids' books and take care of Becca full-time. And I earn free books while doing it - perfect!

Of course, though, I need your help to make Itty Bitty Books a success! There are 5 ways you can help me out right now:

1. Shop my first "e-show" by visiting this link and making a purchase. 80% of the titles are under $10, so take a look and pick a few. Remember, books make fabulous gifts that are easy to keep on hand - I highly recommend passing the "That's Not My..." series on to new parents or parents-to-be!

Here's the address for the sale:

www.ubah.com/HOS166928 2. Share the link for the e-show with your friends, families, co-workers, facebook friends, etc! If your order totals $85, you get $15 in free books - so gather some orders from friends, place them in one order, and get free books! This is also a great way to save on shipping. 3. Contact me about hosting your own show! As the host/ess you earn free books based on your guests' purchases - and you get a chance to gather your friends and explore new titles together. If you book in the next couple of weeks, your show is likely to qualify for a double merchandise allowance - meaning that you would get twice as many free books as you normally would! This is a GREAT deal, but I can only offer it in my first few weeks as a consultant - so contact me quickly! E-mail me at ittybittybooks (at) yahoo.com, call, send me a facebook message, or leave me your contact information in a comment (but make sure to leave the info - I can't get it from Blogger). Feel free to pass this contact information on to your friends. In fact, if you refer someone to me and they book a show, you'll get a free book for yourself! And here's a perfect opportunity for my blogosphere friends: if you are long distance or unable to host an in-home show, talk to me about hosting an e-show; it's really simple. Unfortunately, though, you wouldn't get the double merchandise allowance, but you'd still earn lots of free books. 4. Take a moment to think about whether you or anyone you know might be interested in signing up as a consultant. The start-up costs are low, and there are no monthly minimums. The first 2 people who sign up with me will get their start-up kit (including 31 books!) for 1/2 price - it's an awesome deal! I'm really hoping to find a few folks to be in business with me, so if you are curious please drop me a line. And I promise not to be pushy. ;) Again, feel free to pass this information on to friends or contacts! 5. If you have a connection with a daycare, preschool, elementary school, or library, please let me know. I am an educational consultant, meaning that I can sell to schools and libraries, and we have specially bound books for this purpose. Thanks so much for your support - whether you are able to purchase or not, I'd really appreciate your encouragement and your forwarding this message on. As we anticipate increased medical bills for Itty Bitty in the coming year (remember the TennCare debacle?), I'm trying to help us get a little financial breathing room, if you will...and introduce you to our favorite books at the same time. I'm having fun already, and I hope you can join me in some way! Nancy Speas Hill Usborne Independent Educational Consultant #G3233 It's a rewarding experience when a child opens a book and discovers the magic of reading.

Perspective

After my "rough" week, I have to take a moment to regain perspective...and this prayer helped. I hope it helps you put words to the swirl of emotions that your compassionate hearts may be experiencing in the wake of this unspeakable tragedy. It did me.

A Prayer After the Earthquake in Haiti

Lord, at times such as this,

when we realize that the ground beneath our feet

is not as solid as we had imagined,

we plead for your mercy.

As the things we have built crumble about us,

we know too well how small we truly are

on this ever-changing, ever-moving,

fragile planet we call home.

Yet you have promised never to forget us.

Do not forget us now.

Today, so many people are afraid.

They wait in fear of the next tremor.

They hear the cries of the injured amid the rubble.

They roam the streets in shock at what they see.

And they fill the dusty air with wails of grief

and the names of missing dead.

Comfort them, Lord, in this disaster.

Be their rock when the earth refuses to stand still,

and shelter them under your wings when homes no longer exist.

Embrace in your arms those who died so suddenly this day.

Console the hearts of those who mourn,

and ease the pain of bodies on the brink of death.

Pierce, too, our hearts with compassion,

we who watch from afar,

as the poorest on this side of the earth

find only misery upon misery.

Move us to act swiftly this day,

to give generously every day,

to work for justice always,

and to pray unceasingly for those without hope.

And once the shaking has ceased,

the images of destruction have stopped filling the news,

and our thoughts return to life’s daily rumblings,

let us not forget that we are all your children

and they, our brothers and sisters.

We are all the work of your hands.

For though the mountains leave their place

and the hills be tossed to the ground,

your love shall never leave us,

and your promise of peace will never be shaken.

Our help is in the name of the Lord,

who made heaven and earth.

Blessed be the name of the Lord,

now and forever. Amen.

Copyright © 2010, Diana Macalintal.

Permission is given to reprint for non-commercial use.

Original source: Website of the Roman Catholic Diocese of San Jose, California

http://www.dsj.org/being-catholic/worship/a-prayer-after-the-earthquake-in-haiti

If you are moved to give financially, I highly, highly recommend giving through The United Methodist Church's relief agency, UMCOR (United Methodist Committee on Relief). The Methodists are often the first on the scene and usually the last to leave, and 100% of your donation goes to the rescue, relief, and recovery work, as the church covers all administrative costs. To donate, visit here.

Can You Hear Me Now?

Turns out, that's still the question.

We saw the ENT yesterday, and he diagnosed Becca with permanent moderate hearing loss due to nerve damage. He has started the process for her to get hearing aids. We have an ABR scheduled for January 29th. (The ABR is the in-depth hearing test for which Becca has to be sedated. It's the same test she had last winter and again immediately after she had her tubes placed last February.)

HOWEVER, after talking to the audiologist this morning, she thinks he jumped the gun on making the diagnosis and wants to wait and see what the ABR says before we make any diagnosis.

That's the short version. Here's a bit more detail, for those of you who are interested:

I think we may have to change ENT's. You know how I've felt about this particular doctor in the past, and now I am pretty sure that he and I just cannot work well together. He is, according to everyone else familiar with him that I've talked, the BEST in the city, but somehow we always fail to communicate. Yesterday was no exception.

After waiting forever, we finally got in to see the ENT. He looked in her ears (still not washing his hands - hello, RSV season!), saw lots of wax in one and that the other tube "wasn't functioning," cleaned the wax out and looked again. (The wax cleaning involved a lot of manhandling by me and a nurse. Unpleasant.) He saw that both her eardrums were moving like they should be. (Even though one tube wasn't "functioning"...hmmm...according to our fabulous pediatrician, whom I consulted this morning because I was so confused, that probably means that that ear is draining on its own and Becca might have outgrown the need for a tube in that ear). He looked at her recent hearing tests, on which she scored poorly, showing a moderate loss, and ordered another test, the OAE (which is the same test they use for newborn screening).

We shifted to another waiting area, batted away snotty kid hands, and then saw our favorite audiologist, Mary. She worked with Becca in the NICU and through last fall and winter when the tubes were placed. Since then, we have been bumped around to several different audiologists (they have a rotating schedule), which has been frustrating. I've really had to be Becca's advocate here and make sure they are looking at everything together, but hearing is so technical that it's hard for me to follow everything they are saying, looking for, and testing. So I was glad to be back with Mary, who knows Becca, knows her stuff, and knows how to communicate with parents. We did the test (also involving manhandling, but Mary helped distract Becca with puppets and bubbles!), and she failed in both ears. (It's a pass/fail test.) Mary said that the test, while objective, isn't entirely reliable because the tubes can muffle the feedback response for which they are testing. She recommended that we do a sedated ABR and see what we find. No mention of permanent loss. She talks to the doctor, who tells her that he is not going to replace the non-functioning tube, so we will have to sedate her for the ABR alone. We decide to go ahead with it anyway so we can get a definitive answer (even though we thought we had a definitive answer last February).

We go back to the second waiting area, continue to bat away snotty hands (hooray for small spaces with germy toddlers in RSV season!), and then finally see the ENT again to get a plan. He says, "Well, I'll see you back in 4-6 months to check the tubes, and we'll do the hearing aids and see where we are." Um, what? Sorry? Hearing aids? I mean, I knew that this was a possibility, but how did we get there all of a sudden? I, of course, ask him for more information, and he replies, "Oh, she's got a moderate hearing loss due to nerve damage, and that requires hearing aids." I ask if it's permanent, and he says yes.

What? Is this how you tell parents that their child has a life-long disability? Were you even actually going to mention it at all to me if I hadn't asked? I'm just supposed to say, "Oh, okay, hearing aids, sounds fun." WTF?

I ask him for more information, and he launches into an extremely detailed explanation of the hearing process and the structures of the ear, complete with diagrams. I just wanted to know how and why he was certain about this diagnosis. I mean, if she had nerve damage, wouldn't she have already had it last year? She was 7 months old and out of the NICU for 3 months at her last ABR. Why would it just now show up? I never got that explanation. At this point I was so exhausted, confused, frustrated, and scared that I couldn't even wrap my mind around the right questions to ask, let alone his scientifically intricate lectures. Unfortunately, at this point, it was the end of the day (even though our original appointment was at 2:00!), and the audiologist -- you know, the doctor who actually speaks English, not doctor-ese -- had already left for a meeting.

The really odd thing is, I still kind of like this ENT. He's kind of charming. But incredibly frustrating. And not a good match, parent-to-doctor. I can see how many parents like him, particularly if their kid has clear-cut needs. But I think Becca and I are through with him. Or at least I am. Maybe John gets his appointments from now on.

I tried to recollect all of this for John on the way home, sitting in rush hour traffic with a toddler who just spent her entire naptime stuck in a stroller or being poked and prodded and manhandled and having things shoved into her tiny ears. John asks me the obvious questions that I hadn't been able to articulate in the doctor's office, and I feel like I've let him down when I don't have the answers. I mean, this is my job! I am the one who goes to these appointments, but he is just as much a parent as I am, so he deserves all the information. John and I both take great comfort in understanding what is going on with Becca medically; we always have. If we know what we are facing, it's much easier to deal with. Normally, I'm pretty good about filling him in. Not yesterday. We spend the evening (post-church and post-post-church meeting) trying to figure out what is going on...and I, at least, found myself asking, "Can't she just get a break?"

Reality check: Becca has gotten a lot of breaks, considering. But she shouldn't have needed those breaks, and she wouldn't have, if she had gotten a break in the first place. (Wow, did you follow that?) And I'm really not worried about this particular diagnosis, even if it does turn out to be true. My dear, dear friend Sarah (a.k.a. "Hunter's mom" and Becca's future mother-in-law) has moderate to severe hearing loss and has been in hearing aids since she was 22 months old. Her mom is chock full of information about raising kids with hearing loss. (Sarah's older sister also has the same kind of loss.) And both Sarah and her sister, Kelly (Hi, Kelly! Do you read the blog still?), are wonderful, beautiful, highly-functioning individuals, and they have both earned their Master's Degree in helping professions. Because of their example, their friendship, and Becca's (literal!) never-say-die attitude, I have no doubts that Becca will face and overcome this challenge like every other one she has met.

But hasn't she had enough challenges in her 26-month existence to last a lifetime?

Of course she has. But that's not how life works. And if she's going to have another challenge, frankly, I'm glad that it's this one. She can do this. We can do this. And besides, hearing aids come in pink...and with glitter.

This morning, I was eager to get more answers, so I left a message for the audiologist and Dr. Collins, our pediatrician and heard back from both quickly. (I really love good doctors now. We've been spoiled. I love good doctors...and we have several of them.) Dr. Collins didn't have a lot of answers, but she did help clarify what we did know and was generally encouraging about Becca's hearing and her development in general. Then Mary (the audiologist) called and made me feel worlds better. As I said earlier, she is not ready to give Becca a diagnosis. It is possible to explain away all the poor test results: the tubes can interfere and the behavior testing isn't strictly objective and depends a great deal on how much Becca participates. But she also said that it is possible that Becca's hearing has gotten progressively worse since last February's good ABR. We know that she's at a high risk for hearing loss for several reasons, all related to her prematurity: she was deprived of oxygen, she developed high bilirubin, she had pulmonary hypertension, she was on a lot of heavy-duty antibiotics...and there are probably other risk factors that I'm leaving out. We had assumed that if these factors were going to affect her, they would have done so already. I mean, she has been on the antibiotics for 15 months! According to Mary, though, (and this is interesting) even though these conditions occurred quite some time ago, their effect can be progressive; essentially, they could still be snowballing. They would have expected these issues to crop up earlier, but, then again, we haven't had a good hearing evaluation since that one in February. So we'll wait and see what the test says. Mary was able to move the test up 3 weeks, so that's less time to worry! We'll go two weeks from tomorrow at the crack of dawn. I take that back - we'll have to leave before dawn to get there by 6:30. Wow! I will, of course, let you know what we find out!

I the meantime, here's a picture of our cutie in her adorable coat that is even more adorable without her helmet...maybe those long ears are better to hear us with!