A Different Kind of Cookie Bite


“What’s that you say? How’s that? Come again? Excuse me? Say it again?

Yeah, how about that for the top expressions you don’t want to have on your short list? But, they are mine.

Because I’m losing my hearing a bit. Yeah. It bugs me like crazy.

And, I feel old. I’d like to say that this was just another piece of the hit list that is turning fifty. But I fear that I have that more genetic loss: the “cookie bite.” (I know, so apropos of my sweet tooth, you’d think it was tailor made for me. Oh, it’s genetic, I guess it was….)

But, I’ve noticed this loss for years. In fact, the doc has called me at home after my hearing test for years to say, “You’d really benefit from a hearing aid.” I’ve dismissed it. Pssssh. Moi? Nah. Who’s got time for the fiddle factor? I don’t need to another gadget to have to fool with. And, since my ears already ring a great lot of the time and I don’t need to add hissing or squeaking to the mix. I’ve already got enough of THOSE sounds from the children.

But, I’m starting, after years and years, to finally consider it. I’m even past the point of caring much what it looks like; though I feel bad that poor Tom would have a wife that looks like a senior citizen. I have the hardest time hearing Gabey. He can be my loudest child, to be sure, but when he’s just talking, he can have a voice that sounds muffled, even if he’s talking in english versus Gabelish. I have to ask him all the time, daily, “What? Say it again.” The girls will come down and tell me that the timer on the oven is ringing or that Anthony is calling me. I can’t hear the kids from the far back seat, though, granted, my car is like an ocean liner it’s so big. Don’t even get me started about talking on the phone, it makes me nuts and is making me feel stupid. In fact, lately I feel stupid all the time. I will often guess what is being said, but frequently I’m wrong. Or I will nod and make polite listening sounds. It works pretty well, unless someone actually is talking about something that I’m supposed to respond to, say at a large table dinner at a gala or event. Then, forget it…I usually get up and cruise the room or go refill my drink (Soda, people! Ok, the OCCASIONAL vodka soda…..Gee whiz….)

It’s not that I can’t hear anything, it’s that the hearing is all wonky. Often sounds physically hurt. The TV and radio is usually just WAY too loud. Movies hurt. Unless, they are too low and then I can’t make the voices out. I can hear tiny beeps, sometimes, that others cannot. I can hear footsteps up the stairs. I sometimes have freaky ninja hearing. But I can’t hear the oven timer. I can’t hear my washer spinning though I can feel it. Erratic speaker microphones are brutal. The priests homilies are often a muffle. It’s erratic. It’s annoying, or even crazymaking, to me and to my family.

On the other hand. It might be more peaceful this way, ha! I cope. I compensate. I can’t tell if it’s pretty bad or if I’m just a perfectionist. I KNOW I’m a perfectionist. (except in housekeeping…and fashion…) But, I don’t know if I’m just a perfectionist whiner (sshhh, I know. I am.) or if this is actually a real problem that would be helped with a hearing aid. I suspect it might be. I read an article about the increase in dementia in people with untreated hearing loss. WHAT?! So, that’s a brick on my head. I’ll take the senior style look of a hearing aid over memory loss in a heartbeat!

So, I have a Cookie Bite hearing loss. It’s genetic. I might just be ready and willing to take advantage of modern technology and see if I can hear better. But……my dad has this very same loss pattern too, and he never has gotten a hearing aid. He’s made it to 80 and is still sharp and gets along fine. So, he has been my role model. My measuring stick. I wonder if I should just suck it up and deal like he has. But, I wonder….he didn’t do the hands on, 24/7 mom-raising of 8 kids.

I don’t want to jump the gun if it can’t help or if it’s just me being a drama queen. But, I don’t want to blow it, because I’d see and live with the fallout, even if I couldn’t hear it.


Hope and Healing in Older Child Adoption


How long does it take to heal the body? How long does it take to bring a child from hard places, especially places where they spent a long time in deprivation and/or sick, to a healthy level? How long does it take to say, for certain, “Ah, they are healthy now, really”?

The answer: Far far longer than you might imagine.

The other answer: Be patient, because it can happen.

Our Marta has been home for over three years. They have, at times, felt like forever. Those years have, at times, felt like a blink. She came home to us bearing scars from her past life that will never leave her, inside and out. She came home to us much less well than we expected; thought not actively ill. Perhaps, that sounds like I’m using double-speak. I’m not trying to, rather, I’m trying to be accurate because I think this discussion of our older adopted kid’s health is important. It’s not discussed at length, possibly because each child is unique, of course, and each one comes with their own constellation of issues and needs and whatnot, on every level.

Adopting older children is complicated beyond imagining. All too often that phrase is thrown out and folks nod their head and then move on. Unless you’re actually in the trenches of older child adoption. Then you might sigh with recognition, shudder with dread, break down weeping that someone else has said it out loud, or lift a wry toast of your martini in homage. But, it is – challenging.

One of the really complicated parts of older child adoption can be the nurturing them back to health. And I used the term “nurturing” not “nursing” them back to health. Because only sometimes does the child come home actively ill and needing to be ‘nursed.” And then, I presume, the transition to a base level of recovery from that illness is marked; but then you fall back into this category of health/wellness that marker is much more blurry.

We must NURTURE our older children back to health. For their heart, that nurture will be a lifetime job. For their body, it can take so very much longer than expected. Indeed, new physical issues and problems can take time to reveal themselves just because they have to get over more serious issues first. For instance, they might have a certain parasite issue that you couldn’t even know about because of their overall lack of nutrition and/or other illness or bacterial problems. It can be like peeling an onion. But even once you’ve gotten the bases covered, seen platoons of specialists and had reams of tests, you might not be there. You might think that kid is healthy now, SO much more healthy. And they are….they are objectively healthier than they were on arrival.

But health, it’s a continuum, isn’t it? And that continuum is so much longer and wider than I realized. As I said, Marta has been home almost 3.5 years. She came home just recovered from a very serious bout of TB. But she came home well. On paper. As the years have passed, we have watched her health improving in her skin, her hair, her body filling out, her immune system strengthening. In fact, I thought by last year, about this time that we had made it. We had nurtured her to a really good, lasting base level of health.

But ya know what? She had more leaps to make! Who knew? This girl had more health to gain and grab onto. I was sure she was as healthy as she could be. And she was, for that point (2+ years in). But, guess what she did? Not only has Marta finally gained about 10-15 pounds, last spring she GREW AN INCH!!!! NO kidding! I know! I was stunned myself! I had to remeasure twice, no three times. She grew. She grew!

Marta came to us as a tiny girl. Not a young little girl. Just a tiny person girl. Her age is roughly a mid teen. Her growth was stunted due to deprivation. Her growth was FINISHED by every standard medical marker. Her health got better, and we knew that she would always have compromised lungs from scarring and a big cough and asthma. We feared she’d always be first down to any bug. But, we had no expectations of her actually growing, in any way, certainly not taller. BUT SHE DID. She grew. An inch. That’s HUGE! Maybe not huge on the yardstick but huge in terms of wellness. But -and mark this- it took almost THREE years home to before she was able to grow one inch! She is healthier, she is NOT first down with any bug. Her immune system can be a touch fragile but she was one of the last to get the most recent cold in the house. Her cough is dreadful and lasting, but it’s just a cough. We got her another of her biannual chest x-rays this week. And it is noticeably improved!! Scarred, yes. But, her doc said she her films just keep improving.

How long is that? How much time and patience and work and nurture and food and care and safety and relaxing into a new home does the body need to deeply heal? Because that’s what this is: DEEP HEALING of the body. Her heart and head will be a lifetime of the same nurture, with skirmishes from hormones and trauma triggers. But her body, it’s healing. It’s healing not just on the surface with her now luminous skin and her bright eyes and her features filled out instead of gaunt. It’s healing on a deep inner level, a truer wellness.

So, how long should you expect that deep healing to take when you bring home a child from hard places? I think you should be thrilled by the first stages of healing, heck, by every stage. But, I think that I wish someone had told me to be patient and to hope for more than we first imagined. To expect it to take so very very much longer to heal deeply, physically, than I ever could guess. Don’t get me wrong, I also know that every new marker is so worth it, and such a welcome sign of healing and hope. And I’m so grateful. I’m amazed. I’m shocked that her health is still making such forward progress. It’s been so long. A second lifetime. But this one, it’s all about the healing.


>Success! a la Goldberg….


What do our modern healthcare industry via the insurance companies and Rube Goldberg have in common?
Cmon…think about it…
Ok, I’ll tell you: EVERYTHING!

That said, I’d like to crow and shout a success.  We did it!
See that post, just below? Go ahead, look at it, scan it over if you haven’t, read it closely…it’s a tale to make you shudder.  I’ll wait.

Ok.  Now that  you’re caught up.
We did it!
I am at my desk looking at the letter – the one that says they are gonna cover Sarah’s Lamictal.
We did it!

We jumped through those hoops and swung through the pits and climbed the piles of bureaucratic machinations….and out popped this letter, weeks later.
More precisely, perhaps we fussed enough at the right people we waited for their “process,” dotted the “i’s,” crossed the “t’s”, pestered the managers, bothered the doctors, chatted with the secretaries, and then fumed on blog.
So, I’m not sure it was due to any of our efforts; rather it might well have been simply the right turn of the right cog of a cumbersome machine…..
But I feel like, for once, the little guy, or, to be precise, THIS little girl…won.

She won the right to be kept safe and sound and on the meds that work.
I could just about cry….
except I’m still more than peeved at the cumbersome ridiculousness of the process and the bureaucratic morass that is health insurance coverage.
And we still have at least two other letters sitting on my desk to pursue and leap into the machine of prescription review…..but those letters are not about life threatening changes, they are just about trying to pinpoint who has the right to, um, prescribe: the doctor or the bureaucrat.
I betcha you can guess what MY vote is……  But that’s a whole ‘nother post, or  not, and it’s not what I want to shout out today.

Today, this young girl gets her meds.  Ok, she gets ’em every day, regardless, but today, the coverage we’ve had and paid dearly for, will actually continue to cover those meds (at least a decent copay) instead of getting pulled.
I’ll take any victory as it comes and celebrate it, life’s too short to not.

To switch my analogies: I feel a bit like Charlie Bucket.

Not that I should.
I shouldn’t, but I do.
I hate soulless miscreants and bureaucratic Goldberg machines……but I love a win.
Even if it’s one that should be a given.
I’m a happy mom tonight.  
Score one for the common girl!

>Blog Interrupted…….


My blog is usually a place for my own scrapbook of the family, for my free therapy pondering of mom issues, and talking about my fav subjects: my kids, catholic life, adoption issues and so on.
But today I would like to interrupt our regularly scheduled programming for a minor rant against the infernal health insurance industry… or as I prefer to refer to them: those soulless miscreants.
Recently I got in the mail one of those blasted letters stating that the insurance company will no longer pay for my daughter’s seizure medicine, the name brand version.  It said we must switch to the generic.
Now I’m not one to be all snooty about name brand anything.
I may love a name brand snooty fabulous purse, but I don’t buy them.  My sister gives me them for birthdays and I swoon with joy.
I may love certain names in oh, wine, or chocolate.  And I do buy them because they are so ridiculously much better…..
But I am all about getting t-shirts and whatnot at target or wherever, to save a buck and have almost exactly the same product.
I love a flea market and haggling for a deal; one my son’s favorite sports is haggling for generic goods with street vendors. 
I “get” the generic concept; we live it when it works.
Unless it comes to the concept of a medicine that can save a life.
Especially if that life is my daughter’s.

Perhaps you might think I’m being overly dramatic.
Perhaps I am.
But look at this face:

If this face was your precious girl….you might feel a little dramatic too.
You too might feel like strapping on your gear and going on the warpath for your girl.
Your sense of right and wrong may have just taken a slap, no, a right hook, in the face.
And you too might know that this needs to be pursued, or at the very least needs to be shouted out…..so that others will see when the insurance industry once again is caught out being hypocrites who only care about the bottom line, despite their ads with deep voiced comforting announcers, Norman Rockwell settings…oh so poignant .

This girl of this beautiful face had a seizure that could have killed her eight years ago.
It was a Status Epilepticus seizure.
Yeah, wikipedia that one, read it and shiver.
Hers lasted for HOURS.  Yes, that’s not a typo.  Hours.
She spent days in the PICU.
We were told she should never be put at risk to have another seizure like that again.  Status seizures are serious biz.
Seizures beget seizures and so we needed to make sure we found the right seizure med and stay on it.
Easier said than done, that.

After hacking through the medicine jungle for months and years…we finally did settle down on one seizure med. Others had allowed her to have countless absence seizures which we were unaware of (because you couldn’t tell they were happening, they weren’t physically dramatic like the first big one).  But then we got smart.
We got a better pediatric neurologist and he figured it out and switched meds to one that finally worked.  Seizures = controlled.  Our doc, who we love, has said for eight years, don’t use the generic as the quality control can vary between makers and the name brand is the only way to go. With seizures and this medical history, you must insure the coverage – medically speaking.
So that’s what we did, because it worked.
Breath a big sigh of relief.

Until now.  And now, I’m incensed.
Because now an insurance company, some drone behind a desk crunching numbers, is telling us, AND her doctor, that they flat WILL NOT allow him to prescribe the name brand seizure med for my daughter.
Wait, I should clarify: They WILL allow it, of course, they cannot stop that.  But they will NOT pay for any part of it.  Not until it fails.
Read that again:
Not until it fails.
Only after failure will they allow coverage for the name brand. 
A failure in this case can only mean a seizure, which – sure – might be no big deal.
Or it might be a bunch of small invisible to the eye seizures we can’t know about until we are baffled by why things are not doing well with her.

Or it could be, maybe, one of the rare Status seizures.  Which, yeah, the odds are low, granted.  But, it happened as her first ever seizure…and ya wanna know the odds of that? I haven’t looked it up, but I’m guessing it’s something along the lines of astronomical.

After getting this letter, I immediately was ticked.  But I laid it down, breathed, and decided to “do the right thing.” I followed the steps to disagree politely.  I called the doc’s office.  They said they will talk to the insurance company, they “were getting a lot of these letters.” (!)  Then my pediatric neurologist called me back.   No go.  What? So I called the insurance company myself, asked for a higher up, was told how to step through the dispute process, ask for a preauthorization (Despite that we’ve been using this med for EIGHT years) form.  They faxed a questionnaire to her neurologist.  He duly answered the questions and then it went to review.  And now, I have the letter, another one, in my hands saying that they WILL NOT pay for name brand.  She has no history of FAILING on the name brand….so she must try generic.

Let’s think about that: the name brand medicine WORKS. It prevents my daughter from having seizures.  So, by all means, we’d better switch to one that is untested and cheaper.  One that is impossible to ascertain quality control as multiple sources may manufacture it.  We must switch away from a medicine made to protect my daughter from having seizures, because it hasn’t failed yet.
Is this what medicine and health insurance/health care has come to in our country?
“If it works, lets switch it”…..?.

 If we were talking about medicine for something minor, not life threatening or impairing…say, bunions, I wouldn’t make a fuss.  Heck, I take generic meds to control my wonky blood sugar: metformin. I’ve taken the generic for so long I can hardly remember it’s name brand.  It’s not the generic plan in general I’m objecting to here, let me be clear.
It’s the risk to my girl.
It’s the principal of the thing.
Because this policy in this case is wrong. Period.

So my option now, thank you greedy giant corporate insurance company bigwigs, is to pay a small fortune every month for the proven safe meds for my daughter…. or take the calculated risk and let her try the generic.  Now, I realize, the odds are that the generic will work fine.  However, it simply galls me that we have to take that risk when the risk outcome is so great…all due to the number crunching of corporate, and despite the ridiculous (and bumped up over 20% increase this year) insurance premiums that we pay for our large family.  I had thought that is why the premiums were so high in the first place.   Can  you say there is no FACE in  healthcare, insurance level, anymore? I can.  It’s all about the stats babeee.

Now, to clarify, this is also not to say that we cannot in any way pay for these meds. It is to say that maybe,  just maybe, our insurance premiums that include prescription coverage should pay for it or for a good chunk of it…that’s what we were told and that’s what it’s been.  Our premiums are to cover the burdensome expenses of medicine, no? Should we just bolt it all and go to catastrophic coverage? Seems so maybe.  But….no.
Fortunately, we can pay for meds…but every dollar we do pay for meds that should be covered, and WERE covered under insurance before is one less dollar to go to oh, tuition, charitable donations, and so on.
It’s a poor use of our resources, considering it’s like a double payment (not poor use to pay for meds for my kid, don’t flame me that’s not what I’m saying).  
In fact, it’s a kind of gouging.
And that’s why I object; why and am simply angry, indeed, incensed.

This change in policy goes to line the pockets of the insurance execs, their stockholders, the bottom line of their plush corporate coffers.
Despicable them.
It doesn’t go to make the health care coverage better or more comprehensive or safer…in fact, it makes it less so.  

I think I’d like to go and have a nice civilized sit down with the head of this insurance company.
I’d like to ask them if they have a daughter.
I’d like to ask them if they’ve life-flighted that little daughter to a hospital.
I’d like to ask them if they’ve sat vigil bedside not sure if or how their girl would wake up, or in what shape.
Then I’d like to ask them if they’d like to take that risk.
I’d like to ask them how SURE they are that generics are “just exactly as good.”

Are they willing to bet their kid’s life on it?
I’ve gotta wonder if they would……

My sweet Sarahbird.  
Her fourth birthday, 
about one month before her Status seizure. 

>Little Man Down


 My Little Man, my Anthony, is having surgery today.

It’s not really that big a deal, it’s the classic kid surgery, sort of: tonsils, adenoids out, plus turbinates reduced (those things in  his sinuses that are keeping my boy from breathing well, at all, and adding to his remarkable ability to generate remarkable quantities of , um, snot)

We hope that by doing this we can get this boy breathing, sleeping, and behaving a lot better, ….just feeling better all the way around.  

That may sound like I’m expecting too much from this surgery.  I’m not.  But I do know that if he doesn’t sleep, it’s not pretty; it’s much harder for him to behave and control, well, everything.  Me too- if I don’t sleep, I’m just mean.  Everybody needs to sleep, and to breathe, not necessarily in that order.  We hope this surgery can actually help make those two things happen.  What a concept.

But first we have to do the surgery and the recovery. 
Happily, it’s outpatient, and we love our doc, Dr. Lee. 
Happily, my Little Man loooooves ice cream and he will have as much as he could possibly want.  But even so, I suspect he will be one unhappy camper for a while.  
Happily, I will lift the daytime tv ban, and suffer the consequences of kid zombies and acting out in order to give my little man down something to do while he is stuck on the sofa, mending.  

But, he is nervous about this.  
I’m not nervous about the surgery, it needs to be done, only a tiny bit anxious about easing him through the recovery, as easily for him as possible.  
So, it is not a fun day today for my Anthony.
Please throw a prayer his way for a successful surgery and swift easy recovery, if you think of it.

St. Anthony, pray for my Anthony today and the next week or so!

 Gabey & Anthony at home after surgery today…best bro’s.

>Of Course I’m Interested: Now that’s the kind of news I’m talking about!


So, did ya hear the news?
Did ya hear that now “they” are saying that coffee can help stave off type 2 diabetes?
Yessirree…..you read that right!  That’s my ‘cup o joe!’ 
No kidding, it was a research study, totally legit, go here for the article and link.

Now, what this inquiring mind really wants to know is if that also applies to pushing back the progression of type 2 diabetes??  Now we’re getting personal.  Because I’ve got that.  And I still feel a tad betrayed by my body.  But…. you all know I’m all about the coffee.  So, this is a bit of news that makes my day.

And even if they don’t specify the benefits of pots of coffee on (already) insulin challenged folks per se…..I’m gonna run with it.  It’s only logical, right? 

Anything to further justify and support my caffiene habit connoisseurship, works for me.

That’s my story and I’m sticking to it.
I’m gonna go pour another cup.