July is like that time I was stuck in an elevator

I'm not a fan of elevators.

Particularly in the summer time, in the older buildings where the ventilation is questionable and the elevators are small . . . there's a little voice inside my head that starts when the doors close, chanting "just-get-there-just-get-there-just-get-there", and a small but undeniable breath of relief when they open again.

Back in the summer of 2005 I was stuck in an elevator for 24 long minutes . . . and during that time I miraculously only had about 20 seconds of panic, simply because more than that wasn't an option.

It was a tiny elevator.  Dave & I were accompanied by a very large middle-aged man, a woman in her late 20s, and a very elderly, frail woman who had only gone downstairs for a moment to pick up her mail.  The (extrememly tiny) elevator started up only to stop midway between the second & third floors.

A high pitched
EEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE alarm started screaming.

It was June. It was hot. There was no ventilation.

We were packed in like little standing sardines, literally about an inch between each of us.

All of our eyes were wide and I could feel blood rush to my head and my inner panic voice start with "Nonononowe-have-to-get-out-of-here".

And then the other man totally. lost. his. mind.

He pushed past everyone to the front of the elevator (which made the elevator shake) and started pounding on the door, which made the elevator shake more (scary).  He was screaming (screaming) "GET US OUT! I CAN'T BE IN HERE! GET ME OUT OF HERE! HEEEELLLPPPP!"


And instantly I took the panic rising in me and put it out, like dunking a match in water, because I had lost the luxury of having a meltdown.  I don't think you can have 2 hysterical people in an elevator, and his hysteria clearly trumped mine.  So he got to panic and we focused on convincing him that this wasn't a big deal.  Eventually the NYPD arrived to set us free.  (To this day I ask myself "is this elevator too crowded to spend 20 minutes in" before I make an elevator commitment.) 


Anyway, this July is kind of like that elevator.

For the past 3 days, I've been flailing, feeling an anxiety rising up with every appointment that gets added to the calendar.  Our therapy schedule has totally flipped, as everyone shifted for the summer days . . . this leaves me standing in front of my giant calendar early each morning, rubbing my eyes and mumbling "Wait, what day is it?  And who is coming here when?" Also, since everyone vacations at some point, each therapist has to squeeze in make-up sessions while they're around.

On top of that, we have a crazy number of appointments.  This week included the 4 hr audiology eval and a 1.5 hr functional hearing eval.  Still to come this month are (chronologically): a physiatry eval/revisit, preschool registration, another hearing eval, an opthamologist eval, another hearing eval.  And possibly an ENT follow-up thing.  And there are only 15 business days left this month.  That's a lot of appointments. (Also, because the team that we are working with is fantastic, there are a lot of emails, surveys and inventories that have to be completed before & after appointments. The fax machine has been buzzing with reports and data from the appointments. Papers are piling up.)

I had to buy a travel calendar to carry in the diaper bag because I can't keep it straight.

For the past 2 days my inner voice has fluctuated between " I hate July I hate July I wish that this was done already" to "How will we ever make it through July?" to "One day at a time, one appointment at a time, we will get through this month".  That seemed like progress, but then a flash of realization today . . . am I wishing away a month?  A whole month?

My big goal for this month of my life is just survival? 

That can't be right. 

So I'm putting out that match of anxiety again, as I will not allow myself the luxury of struggling and moping through a month.  I am consciously choosing to pull out my most zen self. 

I will not rush through this month.  There will be sprinklers. 

There will be ice cream. 

(There may also be less lengthy blog ramblings . . . que sera sera.) 

A few vacation pics, and a hearing non-update

We had our big hearing evaluation on Tuesday.  The good news is that her hearing appears to be better than we thought after the ABR . . . she may not even need hearing aids (that's yet to be determined).  The tricky news is that we did 3 different types of evaluations, and each yielded different data . . . so, what does that mean?  Basically it means that, per usual, we remain in some sort of undiagnosed limbo with more testing on the horizon.  Hmm, that feels familiar.  The next appointment is tomorrow.

That aside, we had a fantastic mini-vacation upstate for the long holiday weekend.  (Even Parker came and enjoyed).  A few pictures from a hike we took:

A hiking girl

A summary of my worst thoughts this week

(Well, with a title like that, who wouldn't want to jump right into this one?)

I've spent a lot of time over the past week thinking about, talking about, emailing about and calling people about all-things-audiology/hearing-aid related.  It's overwhelming.  And I have some mixed emotions about the whole situation. 

My dual overriding feelings are those of excitement and anxiety.  I'm anxious about the extra testing we have coming up, and the process of molding and getting the hearing aids.  About getting her acclimated to them (I can't even keep mittens on this kid . . . I imagine the first few days will be a miserable repetition of "No, Maya, leave those in, please" times 1,000,000).  But I'm secretly really excited, too . . . as we've gotten some more data, it's clear that there are some letter sounds that she is probably totally unable to hear in a normal conversation.  I can't wait for her to hear more of what is going on around her, and to start possibly picking up on (and mimicking?!) those new sounds.

Next came the sadness.  Well, chronologically the sadness came before the excitment . . . but in terms of residual emotions, the sadness has been bumped to third.  It took a day or two to get on the "Ok, hearing aids!" train . . . and then somehow in my head the hearing aids were like the walker.  They would be something to use to help her out, until she could gain the necessary skills and "catch up" (by walking on her own, or by making sounds and talking on her own).  In my mind the hearing aids would be around for 3 or 4 years, she would be talking, and they would retire to a photograph and a blog entry about how "Someday I won't remember the reality of living with with hearing aids---I'll kind of remembering cleaning them and managing the batteries and laying them carefully out when she goes to sleep, but I won't really remember."

But while chatting with Amy (my super audiologist friend) I mentioned something about the long term plan, like "So how long does a kid with data similar to Maya's use hearing aids for?"  and she said "The easiest way to think about them is kind of like glasses----if your vision needs help, you wear glasses/contacts to make it better.   For children with hearing impairment, the hearing aids make the hearing better.  She may use them through all of her adult life."



(and I sat down and put my head on my desk)




Forever?





(that was another game changing moment for me)

So I started working at mentally re-moving into Acceptance (first it was acceptance of the she-will-wear-hearing-aids reality, and now, a few days later, this she-will-wear-hearing-aids-forever reality).  At the same time, I fought the Guilt again.  

I knew that guilt was waiting for me in the recovery room, and I had my apologies to Maya ready in my back pocket the night before.  But once I knew the hearing aids were coming, it hit again, and I thought, "You can't talk.  And in some part, your inability to communicate (which must be terribly frustrating) is due to the fact that you can't hear us clearly.   You've sent signs and signals and we should have pushed to do this sooner.  I'm sorry."

Oh, and wait . . .  let me get a jump start on the ones to come . . .

I'm sorry that we have a 3 hour audiology appointment on the horizon---tests and more tests and squirting strange goo into your ears that you won't understand is going to help in a few weeks.

I'm sorry that you will have to have something in your ear all-the-live-long-day to hear us better. 

I'm sorry that you will likely have to explain your hearing aids to friends, teachers, strangers.  Or that people may stare. 

I'm sorry that you'll get used to hearing us clearly, but then when we go to the pool (which you love) we'll have to take them off and you will hear muffled, garbly conversation again.

I'm double sorry for any extra time we spent waiting and double-checking your ears before putting tubes in.  Adding the fluid that you had there for 6 months on top of your hearing loss was adding insult to injury.  You already struggled to hear, and then you were underwater on top of that. 

-sigh-

And there's one more little nagging feeling----the fear.  The fear slice was small enough that as it started to rear up with its "what if"s I managed to push it back down.   But as the days passed by fear kept surfacing and I would tear up randomly and I thought to myself, Well I think I just have to sink into this, embrace the crazy and have a good cry and come out on the other side thinking "Well, if that's the worst, at least I've already looked it in the eye".  And so, yesterday after I put Maya down for her nap I let myself unravel.

Here's the thing . . . her ears have always been weird.  Her L ear was questionable at birth, and at a month old, and then declared normal (the first time that we had an ABR done, at 2.5 months old).  Then it was questionable, then probably normal, then not-quite-sure.  The right ear has been mostly normal all along.  And now this ABR shows mild & moderate (more on the data in a few days) loss.  So, while the mom part of me thinks "How frustrating that we could never clearly decipher this until now.  It's so aggravating that our prior tests were unclear, and that the first ABR may not have been done correctly.  But at least now we know exactly where her loss is" . . . the scientific part of me thinks "The 1st ABR said both ears were normal (2008).  Many of our previous tests have indicated that the R ear was normal, the L borderline (2009-2010).  The second ABR shows mild & moderate hearing loss (2011)."


So, what if it's progressive?




What if she's losing her hearing?




What if we are getting ever-so-slightly quieter and quieter? 


(and then the flood of irrational, panicked thoughts set in, and I rode the wave)

I don't want her to lose my voice.  To have whispers slip away, and the higher notes of the adorable songs that Dave is constantly making up drop out.  What if she can't hear the birds singing on our walks anymore . . . will she think that they just stopped singing? 

Will she get angry that we're getting quieter and think that it's something we're doing on purpose?   

I have a mental flash of her in this video laughing at the dogs, and I think about how she still laughs and laughs when dogs bark at the dog park.  I wonder, if she was to totally lose her hearing, how long would she remember sounds for?  How long before she couldn't recall a barking dog, or remember the melody of a song?

How long before she wouldn't remember what I sounded like when I shrieked "Maya!  Get back here!" and chased her giggling self, or whispered "I love you, Maya" in the middle of a big hug?


So, there were some tears.



And that was yesterday's small mental breakdown.  It was dramatic and self-indulgent, but cleansing.   The most effective way for me to get rid of a nagging, scary feeling is to totally let it in, sink into the worst of it, turn it around and look at it from every angle, and then step away and see that it's not as bad in the light as it seemed in the dark.

The reality of the situation is that progressive hearing loss in young kids is highly unlikely.  (On the flip side, it's not super common to have the mysterious undiagnosed genetic stuff that we have going on . . . so "rare" isn't as calming to me now as it would have been a few years ago.)  Maya's hearing loss is mild (like I said, more on the data details later) so she can probably hear us (and birds and dogs and all that jazz) pretty well---it's just not as clear as it should be. 

Truly, I am still worried about the possibility that her hearing loss is progressive.  But even if it were, and it was progressing to the point of really not hearing at all, I would guess that our enlightened technological age probably offers many crazy solutions (higher powered hearing aids, cochlear implants, etc) that would prevent her world from going silent.  (Which I know it's not.  It's just comforting to confront the absolutely highly unlikely worst case scenario and say "I think there's probably a solution for that, so it would be ok, regardless".)

Whew.

To tie this all up, I'm actually feeling pretty good now.  Excited to get this ball rolling, nervous about how much she'll cooperate for her upcoming testing/molding appointment, and super duper excited/curious to watch her hear things differently once she gets the hearing aids (which will likely be happening the last week in July.) 

:)

Do you hear what I hear?*

Well, apparently not. 

(sigh)

But let me start at the beginning.

We woke up bright and early to get everything in order and arrive at the hospital just before 6.  Maya occasionally was signing for food, water, and milk, but mostly entertained by my wallet, initially:

Daddy, is it just me or is this room very familiar?

And she had fun riding around in the car, too.

clapping her hands in the car

When it was time to change into the surgery pj's, we had a realization:

Mommy, these things actually fit!  I must have gotten a lot bigger! 

For comparison's sake:

These are way too big!  April, 2009 (11 mos old)

Getting closer, but still baggy . . .  March, 2010 (1 yr, 10 mos old)

Hey! These fit! I'm a big girl!  Today, 3 yrs old.

After the pj's were on, she was off and running (what a change from our previous hospital trips!).  We spent a lot of time following her around . . .

 . . . and then she tried to make a break for it .  .  .

It was my turn to take her in to the OR (we've alternated) and man, this time was tough.  She fought and fought against the mask on her face, lasting a good, solid, painful 15 seconds before giving in to sleep.  While holding her down and whispering in her ear, the mask must have slipped a little and I got a mouthful of the gas----which tastes totally disgusting (poor kid)---and a nurse saw me pull back and grimace and rushed over with a chair.  It made me wonder how many parents have accidentally gotten too much gas and got dizzy (I was fine and didn't need to sit). 

The procedure took a full two hours, and our ENT called up to the waiting room halfway through to update us that she was doing well and things were progressing nicely. (I can't say enough good things about our ENT--Jay Dolitsky--seriously---if you're in the NYC area and need a pediatric ENT, he's the guy for you)  He checked her ears and cleaned out a clogged tube, then the audiologist (Jessica) did the ABR.   As soon as she was done, Jessica came upstairs to meet with us . . . and when we went down to recovery we met again with the ENT.

(Summary of the findings and next steps at the bottom of this post)

When Maya woke up, she wanted cuddles from Daddy, and to rip out her IV. 

A word with Dr. Dolitsky was all it took to get the IV removed right away (historically, it's taken 3-4 hours before she's drank enough to convince them to remove it) . . . and as soon as it was out, she relaxed a little and drank away.

In recovery I was just too busy to take pictures, so that's all we've got.

So here's the summary:  She has "mild hearing loss" in both ears.  Both ears.  I was kind of shocked----if anything, I was thinking that we would see left ear trouble, but not both.  Jessica said "The test took a long time" so I'm guessing that they might have seen some weird data, but I won't know more until we meet with her again (sometime soon).  Dolitsky & Jessica agree that hearing aids are the most logical next step, although we don't know how long they might last for----we may feel like they're making a difference and keep them, we may not see any change and not keep them for too long.   They have seen older children with the same degree of hearing loss who have benefited from hearing aids, and others who have functioned fine without them.

In the past week, I've repeatedly questioned going through with this test, and whether it was a necessary procedure.  I can say to Maya "What sound does a "B" make?" and she'll chirp "Ba!" from the other room.  I had been thinking: If she can hear the difference between me saying "B" instead of "D" or "P" from the other room, her hearing must be fine.  But apparently not.

...sigh...

I'm sure with a little time I'll have embraced the hearing aids.  Truth be told, there's a part of me hoping for a miracle moment---the hearing aids go in, Maya looks around in amazement and says "Mama!  Wow, what a difference!"  (well, maybe not quite) It will be incredible if these help to make a difference in her speech, and if they help to change the quality of her hearing.

But I'm also a little sad. 

And the pity-partying part of me thinks: "She already has enough chips stacked against her.  I hate that she'll have devices in her ears and devices on her feet . . . from head to toe she needs technology to function 'normally'."

And the part of me with more perspective says "Oh, shut up, Dana.  She has splints . . . and they help her walk better.   She'll get hearing aids . . . and they'll help her hear better.  What in the world are you whining about?  Oh, and ps---it's not like anything has changed.  She couldn't hear perfectly yesterday, she can't hear perfectly today---and at least now you can help the poor kid out."

Yeah, I know.

(By the way, don't even get me started on the fact that I'm pretty sure the ABR done when she was 3 months old wasn't done properly, and we should have known about this right from the start.)

So, hearing aids.  They're coming down the pipe.  I have literally no idea what to expect (I keep picturing her with double bluetooths, but I don't think that quite right). 

Oh, and today's discharge orders were very specific:

Obviously alcohol and sexual activity are not applicable.  Good to know that reading, watching tv, and washing her hair are all acceptable activities . . . as is driving?  Driving?  And it looks like the jury's still out on nose blowing.  So driving is in, but nose blowing is questionable.  Good to know.

3 ducklings, 2 pigeon chicks, and 1 unsuspecting little girl

3

Maya's special instructor, Virginia, brought over some ducklings today!  (She's a teacher by day, special instructor by night, and the eggs were hatched in her classroom.)  Maya and I were equally excited:

(gasp) Are those . . .

Mommy, ducks!!!!

They are only 5 days old and super cute.  We let them waddle around, drink and splash, eat some food.  When I walked and did a birdy whistle they followed me like I was their mama duck!  Maya was enthralled.  Check out my future ornithologist:

Hmmm.  You duckies are verrry interesting.

Then one of the ducklings started pecking at her foot, which was hilarious:



And did you notice that right at the end of that video the striped duck was checking out Maggie (one of the Little People.  Yes, we know their names.)?  Well, Maya thought it was ridiculous that the ducks wanted to play with Maggie:

Virginia!  That duck's kissing Maggie?!

Oh, Mommy, this is just too much fun.

2

The second egg hatched this morning, and MP is now the proud mama to 2 very ugly baby pigeons :)

1

Miss Maya went to sleep tonight blissfully unaware that tomorrow morning we're heading to the hospital for her ABR.  She's scheduled to start at 7:30, and we need to arrive at the hospital by 6, so it's going to be an early morning.

I can't help but feel like I'm betraying her when we head in for this kind of stuff.  She has no idea what's going on, or why she can't eat or drink anything, and then is scared, and then feels miserable.  I feel like I should have started my apologies tonight . . .

I'm sorry for misleading you into thinking this is just a normal night, little girl.  Truth be told, early tomorrow we're going to whisk you out of here with no food or water and pass you over to a team in the hospital.

 . . . and continue them straight through tomorrow afternoon . . .

I'm sorry that you're groggy and cranky and don't understand why.
I'm sorry that we have to keep waking you up to get you to drink when you just want to sleep it off.
I'm sorry because we chose this for you and you didn't even get a vote.

 . . . ending with the grand finale of either . . .

I'm so sorry that we put you through this whole stupid test only to find out that your hearing was perfectly fine all along. 

 . . . or . . .

I'm so sorry that it took so long for us to figure out that you couldn't hear perfectly. 

(sigh)

I will try to update the Facebook page when she is out and ok, but I'm not sure if I'll be able to do it from my phone.  Thanks for the good thoughts and prayers.  Although she's been sedated (3) other times, this is by far the longest procedure, and I can't help but be anxious (and apologetic).

Lose-Lose (Subtitle: Maya's mysterious ears)

A month before Maya turned one, she had her adenoids removed.  (She was so innocent and little!)

Two months before she turned two, she had ear tubes put in.  (She was semi-innocent and semi-little.)

And soon she'll be 3 (May 30th---it's coming so soon!).  I was really excited when I realized that this would be the first year that she wouldn't be sedated for any procedures . . . except now she will be.  Not until after her birthday (we don't have a date yet, but it's looking like July-ish) . . . but this will be a big one, somewhere between 1.5-2 hours of sedation. 

:(

She'll be having an ABR (hearing test) done.  She actually already had one done . . . back when she was itty bitty (12 weeks).   Here is her full, confusing, unclear hearing story:



At birth, Maya failed the newborn screening in both ears. She had some fluid issues during delivery, so we thought he ears might just be gunky. Before we were discharged they re-screened her and she failed in the left ear, passed in the right.
Two weeks later, we went to the hospital to get rescreened. Again, she passed in the right ear and failed in the left. Her eardrums reacted normally in both (this means that fluid in the ear didn't cause the failure in the left ear). At this point, we weren't concerned---she reacted to sounds, turned to look towards the source of a noise, etc.  We thought the tests were silly---she had tiny little ear canals, and the little buds kept slipping out, so it seemed like she would obviously fail.

My ear canals are too tiny for your silly tests.

At 12 weeks, she had the ABR. In this test, the child has to remain asleep and perfectly still----little earbuds send noise into the ear canal, and electrodes are attached to the head to measure whether the brain reacts to the noise.

12 weeks, during the initial ABR.  Yes, we take pictures during everything. 

Several times, the audiologists came in from the monitoring room to check the leads, which Dave and I saw slipping out periodically. When they told us that she seemed to be failing, we asked them to double check the buds and connections again . . .  and then she passed. They were very suprised and said that they don't typically see infants who keep failing on one ear, but then have a normal ABR. 

Hooray!!!!! 

(Well, kind of)

Fast forward 2.5 years and she has never passed an in-office hearing test at the ENT (OAEs).  Ever.  Sometimes one ear passes, but she's never passed a single one in both ears. It's a mystery. Because of that, our ENT (who is amazing) regularly sends us down to NY Eye & Ear Hospital to have "behavioral testing with 2 audiologists".  This test relies on the Maya's behavior to let the audiologists know what she hears---she has to look in certain directions, at toys that light up, etc.  The problem is, at some point, she's had enough, melts down, and the test end abruptly.  We've gone for testing 4 times now, and for the first three the results were always like this:

Audiologist:   "Ehhhh . . . the data that we were able to get looks mostly normal, but we weren't able to get everything that we really need to.  What do you think about her hearing?"

Me:  "I think she hears.  She understands when I talk to her, she identifies things in books and follows directions.  I don't know if her hearing is perfect, but I know it's functional."

Audiologist:  "Ok, that makes sense.  Come back in 4-6 months and we'll see if we can try again and learn more."

Unfortunately, when I took her a few weeks ago, she was a mess. Scared, panicked, screaming screaming hysteria that was constant and so loud that the noises she was making were louder than the volume of the tones they needed to test her on, so they couldn't get much data. They couldn't get any data at all on the left ear (which is the one that I'm concerned about).

So we were left with a choice:  Do the same as always, and try again in a few months, or repeat the ABR.  The problem is this:  an infant will sleep soundly through an ABR .  . .  3 year old Maya will not.  So she'll need to be sedated for the entirety of the test (1.5-2 hrs).  And that sucks, which is why we haven't done it within the past 2 years.  We've thought "She certainly hears well enough!  Does it really matter if she has minor loss in one ear?"

But now some things are different . . . a very smart audiologist friend of mine (thanks, Amy!) pointed out that while she may hear me seemingly perfectly in our quiet apartment, she'll be in a noisy school come September.  Some minor hearing loss can be easily addressed with simple devices in the classroom . . . so now would be a good time to really know, once and for all, what her hearing situation is.  Yesterday I met with the ENT, and he agrees.  It will likely be scheduled for sometime in July.

The worst part about this test is that it feels really lose-lose.  Either:

a) Her hearing turns out normal.  I feel terrible for putting her through sedation a fourth time, which is miserable for her.  I'm sad that we've wasted so much time on appointments for hearing that turned out to be totally normal in the end.  Lose.

-or-

b) Her hearing turns out not normal.  I feel terrible for missing the oh-so-very-clear signs that were literally present from day 1 (failed screenings, failed tests, not speaking at all, etc).  Hindsight will make a million things seem like a neon flashing sign "Mom!  I can't hear you!  Help me!  This is really easy to fix!"  Lose.

Lose-Lose.

At least we'll have clear answer, though.  The time has come to figure it out for sure.

Celebrate good times, c'mon!*

A very quick update . . .  I got a few emails/ims this weekend asking "How did the preschool meeting go?!" and I replied "You didn't check the Facebook page, did you?" (Reminder: The Facebook page is public, so you don't have to be a member of FB to see it.)  It's just the easiest way for me to put up a mini-update, such as:  The preschool stuff is done, and went well!

There were a few moments of tension during a conference call with the school director in which we were debating whether she really needs a one-on-one aide, but it was resolved when I brought up my safety concerns (she falls, hard, and will take out other kids as she goes down.  And she has potential choking issues and can't self-feed).  So she's in the school we want, in a nice small class, with a one-on-one, and she'll be bussed, leaving me free to lounge on the couch, paint my nails and nap all day. 

We had a lovely weekend of celebrations, starting with brunch after the meeting, and including 2 evenings with babysitters.  And on Saturday I went shopping, while Maya & Dave had some quality one-on-one time, including a trip to the zoo:

Hey you polar bear!  Look, I have a polar bear too!

Today we had to cancel our morning therapies to head to the hospital for a hearing test.  (It's not under sedation or anything, that's just where they do it.)  I'm not a fan of this test--we have to battle morning traffic to get down there, and the test involves sitting perfectly still and silently while she's on my lap and has to respond to sounds.  Last time the room she got scared by how quiet the room is when the doors shut, and if she loses focus the whole thing becomes kind of pointless.  And I think her hearing is fine, but we have to go every 6 months or so anyway.  Sigh.