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It’s been a long while since I’ve written an ear update. At this point, I am sure our ENT would categorize J’s tympanoplasty as a success. Our ENT not only repaired J’s ear drum (well, more accurately, he rebuilt a new one with cartilage taken from behind J’s right ear), but he also discovered the physiological reason for J’s congenital conductive hearing loss. He found that J’s first two middle ear bones were abnormally small and therefore, could not strike his ear drum. And, in any event, the right ear drum had been destroyed by J’s previous ENT who insisted on inserting tubes into his ears even after discovering in surgery how abnormally small J’s ear canals were. I guess fortunately, she never really managed to get the left grommet into his left ear drum.

During the tympanoplasty, J’s ENT emerged from surgery, told us about the deformed ear bones, and asked us if we wanted him to remove the first two ear bones and insert a titanium prosthetic device (TORP) in their place. We went ahead with the procedure and it restored J’s hearing to within normal range. In consequence, J has been unaided in the right ear for the past 19.5 months. Although J’s language development was coming along nicely once fitted with hearing aids that actually worked for his small ear canals at 18 months of age and with the help of a Moog-method based school, J’s language exploded in new and exciting ways post surgery. A few months post-surgery, J no longer qualified for speech services and in our recent check-in with a SLP, J’s expressive language ranked somewhere in the 95 percentile for his age group. For all of this, I am so grateful.

J’s right ear, however, has continued to drain intermittently post surgery. We’ve spent more time at the ENT’s office post-surgery than I care to recount here. Unfortunately, in the past two months, the drainage has kicked up a notch. His ENT thought J had an ear infection a month back, but the culture did not grow anything. When we went in for our follow-up appointment yesterday, J’s ear had begun to drain again. Our ENT suggested it was time for a CT scan to check for a cyst. I said, “Do you mean cholesteatoma?” He answered, “yes.” Well, if you want to strike the fear of God into a mother, just use the word cholesteatoma in the same sentence with her child’s name. Especially if the mother has already been through the horrors of ear surgery once before with her child.

And, sigh, . . . I’ve been working so hard on my fear-o-meter with respect to J’s right ear. In fact, I have a large number of alcoholics in my life–mostly past life but still a pivotal family of origin member who remains actively using. Let’s just say that since childhood, I’ve had a way of collecting alcoholics in my life. Countless times throughout my life, people have recommended Al-anon for me. But I always thought that I could go it on my own. Finally, however, I started attending Al-anon this past fall. Mainly because I realized that my living in constant fear over J’s right ear was impacting my health. I needed to learn how to turn that which I cannot control over to my higher power. I am working the program but I have a feeling I’ll be attending Al-anon for the rest of my life. Alcoholism is the family disease that keeps on giving. Anyway, the word “cholesteatoma” puts my mama fear-o-meter right back into the center stage of my life. Cholesteatoma is a disease that can be dealt with, but there is never a guarantee that it won’t return. I asked our ENT if J’s ear surgery increased his risk for cholesteatoma and he answered, “yes.” And then, of course, I had to ask what percentage increase came from the TORP procedure and he told me, “about ten percent.”

Well, I must admit, I thought I had finally found the serenity to let go of my desperate clinging to J’s ear health. On December 5th, we visited his audiologist for testing of his right ear post-ear infection (that really wasn’t an infection). We learned that his hearing had remained stable (no drainage at time of testing)–of course when he is actively draining, he definitely loses some hearing capacity in the right ear. I talked with our  audiologist (who is outside of our ENT’s office but we keep her because we love her so much) about J’s surgery and about how much hearing J will lose if the ENT has to remove the TORP (I wasn’t thinking about cholesteatoma at all at this point) due to the continued issues with drainage. Of course, it will be total conductive loss, which is about 55-65 dmb. When J still had his ear bones, it was about 35-40 dmb, with a reverse slope loss. His left ear still has all three ear bones, but was never quite as good as his right ear so about 40-45 dmb range of hearing. I talked about how I’d second guess our decision if he loses that much hearing in his right ear because we decided to remove the ear bones. And then, unexpectedly, she gave me a gift. She told me how she used to work as an audiologist in a clinic for kids who had lost hearing due to meningitis and she told me that even if they had had two years of natural hearing before meningitis took their hearing, it made speaking so much easier for them. She told me that this time we had given J of natural hearing (unilaterally) during his language formative years (0-5), was extremely valuable and probably weighed in favor of the surgery we had done. I left her office feeling lighter than I’d felt in 19 months. I left saying, “Okay, God (my name for my higher power). You know J’s every need far better than I ever could and I am going to stop taking this burden of worrying over this ear. I am going to stop second-guessing our decision. I am going to start being absolutely, joyfully, grateful that J is fully lingual at age 4 years, 3 months.

I had about ten days of this blissful state. And then, yesterday, I heard about the “ten percent increase for cholesteatoma.” J’s ENT also conclusively diagnosed J with a perforation in his right ear drum yesterday. And so today, it’s back to working my Al-anon program.

God grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference.

CT scan scheduled for January 15, 2014. And I am so worried about radiation exposure too.

In the meantime, I am hoping to relish this holiday season. E is already home from his first semester of college and got all A’s. H is coming home in 3 days. I am so excited for us all to be together and to cook for my family and to have us all under one roof. To me, there is no greater joy than having all of my kid’s together. I do not intend to “miss” this time by shouldering the heavy sack of ear worry that I’ve been carrying over the past 19 months.

God, you know J’s every need. You love J more than I ever could. You know far more about his ears and what he needs. I put his hearing, his ears, his health into your hands. I lay my burden down. I trust in you. If this is the proverbial thorn in my side (and I think it is), you’ve told me that the only remedy is grace. ‘Let my grace be sufficient for you; for J.”

Enough. There is always enough grace for ANY situation.

IMG_1229

E and J eating at my favorite restaurant (given I am gluten free–and I suppose I need to begin to tell you all about my health journey this past year) before J’s ENT appointment. E held J on his lap while ENT cleaned out J’s ear under microscope. Such a loving big brother.

Open your heart wide,

see how it floats.

See how all this life

we pretend to be

tethered to those

we so love and even

so, be fierce in this love;

wild, heated,

bright colors smelling

of blue and red

spilling,

pouring,

mixing,

as it flows

freely towards this

sweet blond boy.

Tonight I see

every single line

of an American

flag, blowing in

the wind of the

neighboring yard,

as if in slow motion.

Hour after hour of car-

accident moments.

Breathing in heaps of

yellow two-year-old hair.

Any tethers merely

phantasmic ties,

dissolving sutures.

And cold winds will come.

I can even wrap him in

my woolen blanket arms,

as he comes in from the cold.

As he comes in once or twice

before he is back on his way;

strapping on his very journey,

his own “wild and precious life,”*

his own “I am.”

*thanks Mary Oliver for one of the most endearing and ever appropriate lines of American poetry

Josh is scheduled for dental surgery in the morning on Thursday. At 1 pm, our ENT will take over and will clip Josh’s upper frenulum, as well as repairing his perforated right ear drum. I guess they take cartilage from behind his ear for the repair. While in there, his ENT is going to get a good look in his middle right ear and try to determine the cause of his conductive loss (at least from a bone standpoint). If he thinks he can do anything surgically to enable better conduction of these bones, he’ll let us know. We may have some decisions to make in the waiting room. It does appear now that Josh will be in surgery the better part of the day on Thursday. We very much appreciate all the prayers, positive thoughts, and love that you can send Josh’s way on Thursday.

Today we went to the bookstore looking for some children’s books about going to the hospital. The very best I could find was Curious George Goes to the Hospital, which was first published in 1966 (I owned a copy of that book when I was a child). It is the one where George swallows a puzzle piece and has to have it surgically removed. The book is a little outdated, from a medical standpoint, but still gets the idea across, I guess. I also purchased Josh a stuffed Curious George to bring with him to the hospital and back to the OR. I am telling him that George has been through it before and so he’ll help Josh be brave. We could bring Buzz Light Year with us, but I don’t think he’d be very huggable in the OR or in recovery.

We were also sent home with a kit containing scrubs, surgical gloves and mask, and even a gas mask–the kind they use to deliver the anesthesia initially. We are supposed to get Josh used to these items before Thursday. Josh knows he is going to the hospital to get his teeth and ears fixed, but I don’t know how meaningful this really is to him.

Does anyone out there have any other ideas on how to prepare a toddler for surgery?

My little mouse

Emmanuel's Light

www.emmanuelslight.com

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