Wednesday, March 13, 2013

"My Ear Is Broken!"

I sent this email out to the fam on March 4:


So we had some interesting news today! Everything is fine, nothing catastrophic. But it looks like Penelope is just about deaf in her right ear, and probably has been since birth. 

When she had her 4 year checkup, she flunked her hearing test. We waited a month and had her do it again at Abby's next checkup to make sure it wasn't a weird fluke, same results. So we went to the UCSF Audiology Clinic, and they did a 75-minute test on her today. She was, of course, poised and wonderful and a very brave little champ -- the doctor, Dr. Lau, actually said that most kids her age don't have the attention span for the test, but she did. 

They did three levels of testing: they looked in her ear and found no structural damage; they did a second test that somehow checked what was getting through without her having to do anything, and it confirmed that she wasn't hearing with her right ear; and she did a rather long, involved third test that required her to wear earbuds and answer commands into each ear, and also to do the same while wearing something that stimulated her inner ear by feeling rather than sound (?!?!) to see just how damaged the area was.

What the dr. told us was that the mechanics of her ear are fine -- her eardum is intact, there's no fluid. The damage seems to be nerve/cellular damage to the inner ear most likely due to prematurity, either because she was on the ventilator (only for a day or two!!) or just due to the extra stress of those weeks in the NICU. It is not reversible, it is not treatable, but nor is it degenerative. She has absolutely perfect hearing in her left ear (in fact, I noticed she has perfect pitch, not to brag but what can I say, it's true). 

The level of deafness is not "profound," but it is "severe." This clinic does not like to deal in percentages,, though of course I tried to pin them down to one, but what the dr. told me was that normal speaking is 50-60 decibels, and she can only hear in the right ear at 90 decibels. 

Well, but the good news is, she CAN hear in the right ear at 90 decibels, so a hearing aid will work for her, and will be covered under MediCal (most likely). In the past, they didn't bother with a hearing aid for kids who had this kind of hearing loss, but that around 3rd grade they noticed kids falling behind because the extra effort of hearing everything in the classroom finally started to affect their performance. So if she has a hearing aid starting now, before kindergarten, she will not have that deficit, will be able to hear normally as long as she wears it. 

Next steps: she will see an ENT to verify that the damage isn't progressive and get more of an idea of exactly what is wrong, and will have a second audiology screening to verify the results we got today. At the second audiology screening we will also have a hearing-aid consultation and the options will be explained to us. This will happen in early May and Randy will be able to come to the appointment as well (Abe will be in school). 

Eli pointed out that this is no different than finding out she has to wear glasses, and I think he is quite right about that. She's nowhere near deaf or impaired in any way, and if this is the worst outcome of her prematurity, I think we really got off cheap. 

Anyway, wanted you all to know. Penny is VERY excited that she and Grandpa Harry "will match," and is really looking forward to sharing with him about the "ear bud" she will be wearing. Her FIRST question about it was "can I get one that is pink?" and then I explained it to her as being a very small speaker that will help her hear in the ear that is stuffy. She also told me that when she grows up she wants to be "a girl doctor who only does ears," like Dr. Lao. She is a very cool character, and I am very lucky to be her mom. 

Abby is fine, completely un-deaf and having a great time at school. :) 

Thursday, March 7, 2013

iPhone Haters Gonna Hate, Sanctimommies Gonna Sanct

So this kind of thing keeps coming across my transom:

https://www.facebook.com/marshall.miller.988/posts/565842876759721
http://www.kveller.com/blog/parenting/dont-text-around-your-kids/

And I have this to say:

Dear other parent who has no idea what I'm doing on my iPhone:

I was awakened at 5:00 this morning by my beautiful toddler, who snuggled up next to me and wanted to nurse. Though I am happy to do this, I did wish for a few more minutes of sleep. The cozy cuddling of infant nursing has given way to the very physical, wrestling-like version of the same activity, and over the next hour and a half, I was able to lightly snooze for about twenty minutes at a time between her kicking me, accidentally biting me, and reaching up to hug me and kiss my nose. I didn't know I could feel so simultaneously overjoyed and miserable.

When my older child woke up, I got us all dressed, which involved wiping a poopy butt while a little foot was playfully stuck into my ear, nose, and eyes in time to a really hilarious song that was being made up on the spot. At the same time, a four-year-old was balancing on a twirling egg-chair while tugging on my shirt for balance. The two-year-old then shrieked "NO!" at every clothing option until she finally acquiesced to wearing the dress she wore yesterday. The four-year-old has been regressing as the two-year-old has become more verbal and assertive -- understandable, and age-appropriate, but tough to deal with. So rather than snapping at her for her babyish behavior, I then dressed her as she wished, playfully pretending she was my little baby so that she could feel like she was getting the attention she craved.

Yesterday, we had a doctor's appointment where I learned this older child has significant hearing loss in one of her ears due to the fact that she was born prematurely; my task today, while my kids are in my care, is to follow up with her pediatrician, make an appointment with an ENT who is difficult to reach, and research whether and how her hearing aids can be covered by any kind of insurance. I am also going back to school, but didn't get into the program I had applied for, so I am trying to figure out if I can still get a job in my new chosen field without this particular masters program. Also, the car is in the shop.

But I don't want the kids to be stuck in front of the TV all day while I take care of this growing list of tasks, so I took us all out to the park so they could run around and get some exercise. I packed nutritious snacks, bottles of water, extra diapers, both Princess kick-balls, and the backpack so that the toddler can nap if she needs to while we're out.

Now, I am finally sitting down for the first time today. I just realized that though I brushed the girls' hair, I forgot to brush mine, and it's still in the beauty-salon clip that I stuck it in when I woke up. And, with horror, I'm also realizing that I didn't brush my teeth. I am dying for a second cup of coffee, but I'm not supposed to have too much because I have high blood pressure from two bouts of preeclampsia. So okay, I'm settling into a park bench, my ears attuned to the girls in case they start shouting at each other.

So now I am doing a little research on my phone. I am emailing links to their dad, who will follow up on some of this research between tasks in his own day. I am calling their doctor and waiting for call-backs. I am trying to plan the weekend, when my step-kids will be here. I am coordinating the preschool fundraiser on Sunday, because our budget requires that we use a cooperative preschool.

When I'm done with that, I might also be doing a crossword puzzle. I might also read the library book on my Overdrive app. If I had a magazine open in front of me, you wouldn't think twice about it.

I assure you: I pay LOADS of attention to my children. At 3am, as their father sleeps through noises louder than a hurricane, I am propelled out of bed to soothe away a nightmare. At 6am, I'm floating fitfully through half-sleep as two children pretend I am an igloo (I have no idea how this would work, but it gives me the weirdest dreams). At 9am, I'm showering with the door open and my head out from under the water so I can hear them. And so on through the day.

So if I'm taking a half hour to check things on my phone, dial back your judgment and pay attention to your own kids. Quit projecting on me. Sorry you feel like such a lousy parent yourself, but that's not my problem. Believe me, if I watched every second of your day, I could find plenty to write nasty posts about. So stuff it in your diaper genie and go do something to make the world better instead of writing toxic crap for others to post on Facebook.

And if you're a guy writing this crap, let me punch you in the taint, give you a nipple-twist, and slap you awake five times a night and THEN see if you still have the same big mouth.

P.S. And if I were paying attention to my child at the playground, you'd write some equally crappy blog post calling me a helicopter mom, so I really can't win. Which is why I have stopped trying to please strangers like you.

Love ya! Not really!