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Friday, July 4, 2008

Conner Had Surgery and How We All Went to the Acupuncturist in Kansas

I really don't mean to get on here after such a long hiatus and continue to write about all the medical ills in this family of mine. But it seems worth mentioning that Conner had his surgery on his arm yesterday and everything went pretty much as planned. He came home pale and woozy from the anesthesia, but once that wore off completely he was ready to eat and smile and milk his war wounds for all they were worth.

That mole on his arm? The one that promptly dropped from any further mention in this blog? He had it removed in April, and I kept thinking I would sit down and write about it real proper-like, but kind of like my intention to start exercising or organize the household files or get that blasted wall border removed all ready or the million other topics I thought I would blog about, it simply never happened.

I knew something was up with the results from Conner's moles when we went to have his stitches removed and the technician left us -- me and all three kids -- for an indefinite period of time in the clinical room where there were numerous foreign cords and sharp objects and pushable buttons for Sean-Peter to find and destroy after I asked him if the pathology reports were in. After he had been gone awhile and I had exhausted every item in my backpack and purse and was contemplating tearing out my hair and tying the individual strands end-on-end to see if maybe the kids would accidentally strangle themselves -- or me -- a doctor I had never seen before came in and, never looking up from the papers he was obviously reading for the first time, told me that the one mole had looked suspicious so they had sent it to the Mayo clinic for further testing.

Um, okay. Can we go now? I mean, really. What am I supposed to say? Is it cancer? This guy didn't know me from Eve, and Conner was sufficiently oblivious to his sterile report as having anything to do with him. I saw no point in asking questions.

I talked to our regular dermatologist later, of course. He seemed to have trouble articulating the diagnosis of Conner's mole. It wasn't that he didn't know what to say; it was that he had so much to say. He literally spewed forth medical diarrhea, complete with terminology and names of all the doctors and pathologists who pored over Conner's mole tissue like a bunch of giddy scientists analyzing an alien specimen. At least that's what it sounded like to me, sitting at home trying to make sense of all this noise that was coming out of my phone from this kind, concerned doctor who obviously adhered to the more is more principle.

Apparently it was a difficult diagnosis to make, but a "severely dysplastic" "spitz nevus" was thrown out as the official description. But you still want to operate? But that's not melanoma, is it? Oh, but it's severely dysplastic, which is the real cause for concern? And it used to be considered melanoma, but now it's not? But one pathologist noted that if she hadn't known it came from a 12-year-old boy, she would have thought it was melonoma? Which it probably will be eventually, even if it's not now?

Things being clear as mud and all that, we ultimately went with their recommendation to have more tissue taken out to ensure that all the abnormal (melanoma? pre-melanoma?) cells were removed the first time around. We should know the results next week. They also sent his original mole tissue to a geneticist in California for, you know, genetic testing. But we haven't heard anything back on that yet, though it's been over two months.

We sent Conner into surgery yesterday knowing they were going to remove one lymph node from under his arm, to do a biopsy on that as well. Only while they were there they did this dye thing? It tracks up into the lymph nodes and somehow marks the ones that need to be removed? And they told John, before the surgery, that it was marking two, only when they came out of surgery they said it actually marked five so that's how many they ended up removing. We were a little perturbed they didn't come out and do parental consent and all that. You know, instead of telling John after the fact.

Not that it would've mattered, I suppose. There's something so imposing about medical professionals, and their been-there-done-that matter of factness that makes you feel like a heel who doesn't want the best for your kid if you question their judgment. It just seemed to me, when John told me about the lymph node surprise, so counter intuitive to remove something from your body that is supposed to help you fight infection. The radiation tech guy told John that this dye showed which lymph nodes weren't doing their job which allowed the bad cells to develop in Conner's mole in the first place ... the surgeon told John that the dye showed where cells from the bad mole might have traveled. Sounds like the age-old chicken or the egg question, if you ask me. But nobody did, and it's all moot now.

And now here it is July and so far this summer seems to have completely snuck by unannounced. It doesn't help that it's July 4th, the quintessential summer holiday, and it's raining, which is pretty much what it's been doing here since March (once it stopped snowing)and we have belatedly realized that we have no clue what the laws are in this area about shooting off fireworks, though we're thinking that the total lack of local fireworks' stands is probably a clue.

Not that I'm much of a fireworks fan, I'll admit. I do like sparklers, even though their impact has waned from my childhood since they've improved their safety quality admittedly so kids won't burn their hands but with the adverse side effect that they also no longer can spell their names in the air like little magicians waving their wands. (Remember?)

It doesn't help, though, that we just came back from Kansas where Conner got his cousin fix complete with working at the local fireworks' stands there alongside said cousins where Conner caught onto the fever and glamour of lighting things up and watching them go boom. We readily and naively said okay of course when he asked, as a special thing post-op thing to do, if we could set off our own fireworks at home. Like, what's so special about that? Oops. Luckily, the rain is saving us. How about that movie instead that we talked about, champ? Welcome to Ohio.

We did enjoy a week of summer in Kansas. When we showed up my family said that was their first real day of swimming weather, as they've been having quite a bit of rain and mild temps themselves. This was especially nice because we stayed at my sister's in Derby, and they have a pool. This is one of the few pictures I took the whole week. And by a few I mean few. Because right after I took this one? My camera battery died. And my charger was in my toiletry bag. No problem, except my toiletry bag was sitting in our house in Ohio, right where I left it before forgetting to load it in the van. No toiletry bag, no life. Never underestimate the power of mom forgetting The Bag.

I did pick up my mom's camera. Only to have it tell me her memory card was full before I could take a single photo. No, neither one of us thought to put my memory card in her camera. We're cool like that.

So I zen'd it and pretended that I was on a deserted island. Only with indoor plumbing. And it wasn't deserted, but occupied by boys and teenagers seemingly bursting from said plumbing throughout my sister's resort-like home, eating everything in sight. Seriously. I would show you pictures but they would all just be a blur. Oh, that, and my camera was dead. Did I mention I forgot my toiletry bag? It was definitely harder for me to go without my camera than without makeup. I think that could say a lot about a person, don't you think? Which would you rather go without, in a house full of people: your camera; or your makeup? (Well?)

The main motivation for our whole cross-country trip was to take Sean-Peter to an acupuncturist in Wichita, a certain Dr. Jones (not to be confused with Dr. Jones of the Indiana Jones fame, though her husband is reputed to be the inspiration for the film's character) to see what effect she might have on his neurological apraxia of speech disorder, since acupuncture is to Chinese medicine what neurology is to Western medicine.

Not that I have any idea what I'm talking about, but that is how I understand it in my layman's terms. I'll direct you to my cousin's natural health site where she gives a good overall definition of this type of treatment.

Sean-Peter had already responded remarkably well to occupational therapy, a type of treatment that is geared toward helping children with any sensory integration issues that they may have. I have slowly come to learn about all the little things that add up to the big picture which is Sean-Peter's struggle with speech. It's not enough to say that he has a speech disorder that impairs his ability to sequence the thoughts from his brain into words using the muscles that we all use to talk. You can't separate his other struggles -- his extremely picky eating; his difficulty with auditory and visual filtering; his seeming lack of innately sensing the space his body is inhabiting -- from his inability to speak intelligibly.

So many of these things -- oh, he's all boy; all children are picky eaters - he'll grow out of it; he's just detail-oriented, like his father -- I have come to understand should not simply be written off as Things That are Sean-Peter but also as part of the overall picture that can help to understand a neurological disorder that mainly grips his speech, yes, but should not be treated by dealing with his speech alone but rather with motor planning throughout the whole body.

Indeed, within two weeks of beginning his once-a-week occupational therapy -- and employing a few of the techniques at home -- his intelligible speech literally exploded. My family in Kansas, who all heard him "talk" at Christmas time, were quite simply astounded when he showed up talking for real in June. One of the things they commented on, too, was not just that they could understand so much of what he said, but that he said so much! Even though you suspected that he was harboring an extensive vocabulary that was lost in the hypernasality that swallowed up his intelligibility, it's quite another to hear it come out of his mouth at the same time you're coming to terms with understanding him in the first place.

His private speech therapist has said that she usually sees progress like this in apraxic children take a year or more to achieve. It readily helps that he is so "stimulable", but both of us agree that this leap occuring right after he started OT is not coincidental.

So we came to Kansas, and to Dr. Jones, already quite pleased with Sean-Peter's current level of speech. Having arranged the appointments and the whole trip months in advance, we had no desire to call it off. At the same time, though, I can't say that I'm wholly disappointed that, immediately following his appointments with her, that we have not recognized a dramatic improvement in his speech. How much more dramatic can it get? is how I feel, at the risk of sounding complacent.

Which isn't to say that she didn't affect some change. His poop is different, for one thing. And while that may be TMI for some of you, I'm sorry, but poop is a very significant and telling function of our body. It wasn't so much that I thought it was unhealthy before -- he was pooping, after all -- but it's kind of like how you don't always realize how sick you really felt until you're all better. It's just different and ... healthier, that's all. I'll spare you the details.

Because we were already going so far and to so much expense to take Sean-Peter to this acupuncturist, I decided John and Conner should go as well. And why not me, too, while I'm at it. And, really, my desire to have Sean-Peter helped in any way possible served to provide me with some treatment that I otherwise never would have gone out of my way for, and that alone was worth the whole trip.

I don't believe that all acupuncturists are created equal -- otherwise I would've just looked someone up in the phone book in Dayton -- and this one truly is gifted. It wasn't just a matter of going to someone and "getting stuck with needles", as I would readily joke. It was like a treatment and therapy session all rolled into one. So different from medical doctors, who ask you what your symptoms are and then decided whether to prescribe you medication; she talks to you about things that seem to have nothing to do with anything, then reads your body as you answer and gleans information that your words couldn't even have told her was there.

But this book has gone on long enough, so I will leave you with a song that Olivia and I (and, yes, Sean-Peter, too: I'm telling you, he's amazing) have been singing a lot of this year. Which is particularly pertinent on this wet, wet, 4th of July. This is the version I remember growing up singing. Somehow it morphed into something rather morbid, if you look at the lyrics -- which aren't the original ones, I know. (I used to always wonder, how did he bump his head if he was already in bed? Did he die? Is that why he didn't get up in the morning? Or was he just knocked unconscious?) But I figure if this is how I remember singing them, then that's how my children will sing them, too. Traditions, you know.

It's rai-ning
It's pour-ing
And the ol-d man is snor-ing
He went to bed
And he bumped his head
And he never got up in the mor-ning.

I am curious, if you would all oblige me (the two of you who actually read to the end) -- what was your childhood version of this song?


the dragonfly said...

Wow, craziness. You've been busy, girl! Glad to hear from you again. :)

And that's close to how I sang that song as a kid, but for us the last line was "and he couldn't get up in the morning." I never thought about the old man...maybe he did die! Odd that I never thought about it..

Jennifer said...

Thinking of you and your family. Sounds like you are dealing well with all the craziness. Thanks for updating.

Anonymous said...

You know how you sometimes find a book that is so good that you are sad and miss it after you have read it? That is effective writing and that is how you write. You are truly gifted.

I was alarmed to read of Conner's surgery and the reasons he had it. I hope this is something transitory and something he will have to deal with all of his life.

But I must tell you that the description of you and the three children sitting in the doctors office waiting, sent me into fits of laughter.

Lets just say I love who you are and I am very proud to call you muy daughter-in-law!

Mrs. Staff Sergeant said...

We sang the same version of that song :)

Sorry to hear about the mole situation. Sheesh, it can all be so confusing! I'm glad to hear your doctors seem to be covering all the bases though- even if it meant more surgery. We went through all the lymph node stuff with Dillon too, they took gobs and gobs of them out. But better safe than sorry I say! I hope your next path report comes back with only positive news- we'll be praying!

As far as the acupuncture, I think you're very brave. I know it's not supposed to hurt but the thought of being stuck with all those needles totally creeps me out! lol

judy said...

Don's version, "He went to bed with a cold in his head and didn't get up till the morning."
Great blog. Somehow that was way more info than I got when you were actually here. Could it have had anything to do with the zillion interruptions! (including me asking you too many questions.)
Glad you had a safe trip home. Tell Conner he's a trooper!

Scott and Hannah said...

Great to get caught up! Wish we could have made a trip to see you while you were in town. Sounds like you had a good, productive trip despite the missing camera.

Thanks for adding my website in there. I couldn't get too it. But, it my just be my computer.

Hope you guys continue to have a great summer and may the rain stop for you one of these days.

Tam said...

I was thinking about the song...
We use to sing

ITs raining its pouring the old man is snoring he bumped his head, went to bed and had a bruise in the morning.....

That is what we use to sing....

Laura said...'ve had a busy month! So glad that the surgery is over with. Will be watching for results on the tests!

The song...
"It's raining.
It's pouring.
The old man is snoring.
He went to bed
and bumped his head
and couldn't get up in the morning."

OHmommy said...

Oh man, oh man..... what a crazy summer you are having. I am glad the surgery is over though. Must have been terrible for you. HUGS.