Saturday, February 26, 2011

Hack!

Oh, if it's not one thing...

For the record, I have always been very thankful for the health of my children. I have 5 extremely healthy children, who rarely even get colds. To date, Noah is STILL the only child to ever have an ear infection in his life---and it happened only one time, at that. Can you believe that? How many classrooms of children could claim 4 out of 5 haven't had a simple ear infection? That's so incredible.

Also for the record, Michaela is fairly healthy herself. She rarely gets any sort of cold, flu, or infection either. The first time she ever got an antibiotic was when she got the flu 2 years ago, when she was 11. That's a pretty good track record! Many handicapped children are susceptible to anything and everything that comes their way. Seizure kids usually get hit pretty hard, the sickness symptoms being compounded by the breakthrough seizures that rear their ugly head.

But she does better than most, and is just very healthy everywhere other than her brain.

So, I've made it a point to be grateful and thankful--vocally thankful--for how much I DON'T have to worry about, with the other children.

****

But sometimes, life throws you a curveball.

Such is the situation with Gabe.

If you follow me on Twitter or Facebook, then you already know what I'm talking about. But in case you're not into those things, here's the scoop:

Gabe coughs.

A LOT.

The vast majority of his coughing happens during meals. He's just going on his merry way, enjoying whatever is on the menu that day, when the hacking starts. Oh, sometimes it's just a little "cough, cough," but about every meal it turns into a "HACK HACK HACK." And this can be so forceful that he can eventually loose his meal.

And break blood vessels in his face.

And make him decide that he doesn't really want to eat THAT badly.

Here's what he ate one day recently (his brother's plate...he doesn't eat this much!)...


And then this is what it did to him...


video


Poor guy...

I had been hearing about Gabe's issue more and more while I was gone to Children's. People were babysitting him, and noticing that something just wasn't right. Whether he was breathing really bad, or he was just coughing too much, he just wasn't right....and have I had this checked out?

Well, yes, as a matter of fact, I have.

****

Two year ago, it started. I told our pediatrician about it after a few months, and he agreed with me: it sounds like he's aspirating when he eats. His food goes down the wrong pipe. We tried anti-reflux medication (another reason people cough), and when that didn't work, aspiration just seemed reasonable.

Now, just so you know, I already have one child that aspirates (Michaela) and I'm pretty familiar with how it looks and sounds. I was pretty sure that I now had 2 kids with the same problem on my hands. The big kicker was this: why would an otherwise normal child be aspirating? Michaela's reason is easy: neurological dysfunction. But Gabe is neurologically "intact" and really shouldn't have this issue unless there's some mechanical issue going on.

So, the pediatrician referred us for a swallow study.

And would you believe it, he went through that study (where you eat in front of an x-ray machine) and didn't cough ONE TIME?

Go figure...

So, from all appearances, my hacking child was perfectly fine. And no aspiration to speak of.

But the pediatrician wasn't quite satisfied (good thing, because neither was I), and sent us to a pulmonologist. Who in turn looked at the swallow study, learned that Gabe was the baby of 6 children, and proceeded to take my words out of context and label his coughing as "a behavioral problem." Seriously. He didn't even really examine him. That doc just decided that he was looking for attention, that I must be babying him too much, and that since he passed the barium swallow, nothing was truly wrong.

I was flabbergasted.

I asked him, "So, you're pretty much saying that the only way I can prove that there's something wrong, is to wait until he gets aspiration pneumonia??"

And he said, "I guess. I think you should just ignore it, and he'll stop."

I completely disagreed with his opinion. I knew my kid. I didn't baby him too much. I didn't fawn all over him when he coughed. If anything, I got on his case because he would get to the point of puking all over the place. So I would try to get him to stop coughing, but I wouldn't pamper him because of it. I am the Queen of trying not to "make mountains out of molehills" and Gabe's cough was no different.

But, in order to just suck it up, I said to myself, "Ok, fine. Maybe he's right. We'll prove out his theory. I will completely ignore Gabe and his coughing, and we'll see if he stops 'looking for attention.'"

And that's where I left it...

...over a year ago.

****

But with me gone so much over those 3 months, I wasn't around to "ignore" him. And others, especially my Mom, were a little concerned with his problem.

When I got home for good, and after hearing their concerns, I realized that it had been a good, long while since I had started ignoring the coughing. It was long enough. This needed to be addressed.

Because, like I suspected, he wasn't getting attention, and he wasn't looking for any either.

There was something wrong with my son.

****

So, a couple of weeks ago, I brought him back in to the pediatrician. Again, in spite of the good
swallow study, he agreed with me that it sounds a lot like he's aspirating.

So we redid the study.

And, same thing: Everything looks good. He didn't even cough.

But, the speech pathologist who was there to administer the test, was the same one we had the time previous, and she remembered Gabe. She was pretty irritated that he was back for the same problem, and that it hadn't been addressed fully. And even though the test came back fine, she felt like something had to be done. She pretty much put her foot down and said that something WOULD be done. She let him finish his meal (the test is only about 10 minutes long, and he had more food to eat) so she could watch him further. Sure enough, he coughed. He didn't hack, but she was satisfied that he was indeed coughing when he ate. And that he really didn't want to eat because of it.

In her mind, it started to make sense...

****

See, she knew from his history that he had aspirated a peanut into his left lung 2 years ago. He had to have surgery in order to extract it. The whole episode wasn't the most pleasant thing a child could go through. And he was such a little guy (who is terribly shy), that she was starting to think that his body had developed a habit of coughing to protect that airway.

She knows from her experience, that some people will have these traumatic events, and they will start to instinctively cough. It's their brain's way of keeping that problem from happening again. However, it's an inappropriate response because it's generally not needed--they're not really aspirating. And in an older child or adult, they can retrain their brain to not cough every time they go to eat something. They "talk" themselves out of doing it. And after a while, the cough is a dead issue.

But with Gabe, he wasn't capable of retraining his brain to not cough. He was too young, and not verbal enough to even put into words what was bothering him, so the cough just became a habit his brain formed.

It's not something he has control over. It's not something he's trying to do. It just happens automatically.

But it's not necessary. It has no true purpose.

Yet, it's very much there, and it's only going to get worse as he gets older. He already can have an aversion to eating because of all the coughing (and puking), and he doesn't need that to get even more pronounced.

Well, it's her theory.

Sounds pretty legit to me.

****

So, as of right now, that speech pathologist got us hooked up with another therapist who specializes in correcting these unnecessary coughing spells. Can you believe they actually have someone who does that? Must be a popular problem!

We also have an appointment with a Gastroenterologist to rule out reflux. That was the pediatrician's idea. I think it's possible, at this point, but he has no history of reflux--not even as a baby--and he never responded to the anti-reflux meds that we tried when this all started.

But we'll see. He seems to have more symptoms of reflux now than he did even 2 weeks ago.

And even if that's not it, I totally can see him having that psychogenic cough the therapist described. He doesn't completely fall into that definition either, but it sounds close enough to be the likely culprit.

Either way, I'm glad that something is being done to help this problem. Poor Gabe. He just looks so pitiful when it happens. That video was just the tail end of a very forceful coughing fit he had one day a couple of weeks ago. I videotaped it in order to prove what I was seeing, even if the doctors never got the chance to see it first hand. In the clip, it all started from a chip he ate. However, it usually isn't something so pointy and "cough inducing." He hacks on everything from applesauce to chicken.

Sigh.

If it isn't one thing!

But I trust he'll be doing better by the end of March, when he goes through therapy and sees the GI doc.

Maybe then the hacking will be a thing of the past, instead of something that's been bothering him for over half his life.

Thursday, February 10, 2011

Of Questions, and Answers

I was reading a commentary tonight by someone who is known to be an incredibly deep thinker.

Those who know me, would say the same about me as well. I tend to think to a fault. Analyzing the ins and outs of this, that, and the other; without any prejudice for the importance of the matter. I am just as likely to think deeply about folding laundry as I am about the meaning of life.

And the questions that spawn from this thinking...

Oy vey.

It's pretty obvious that when your pastor nicknames you "The Question Box," you have a serious personality trait.

Perhaps, even, a strength that is hard for others to recognize.

In my case, I strongly believe that my need to question what's going on around me is a true gift. It is the ability to see outside of the box. The realization that things aren't always as they appear. And especially the catalyst with which I learn. The day I stop asking questions, is the day that I will be in my grave. But it hasn't always been a part of me that I joyfully embrace.

I've been mocked for it.

Hailed for it.

Scorned for it.

And relied on for it.

Which sends terrible mixed signals. On one hand, I can get phone calls asking me to reiterate something I learned, when I was the only one bold enough to look stupid enough to ask the question in the first place. On the other hand, I've been ridiculed for daring to question something when everyone around me was stewing about that very thing.

So there are consequences to asking questions. I know that.

Most of the time, I can honestly say, I don't ask the question unless I'm ready to deal with the answer. Whether it be to my liking or not. Whether I determine it to be the truth or not. If I can't handle the answer at that time, then I keep my question to myself.

Even information can be acquired in moderation.

I don't need to have a need to know...right now...all the time.

****

"It occurs to me that we should treat answers like pronouns, connectors that get us to the next question." *

Mr. Haseltine's post about asking questions, and the need for answers to be springboards to the next question, is something worth chewing on. Personally, I can justify the concept. I can see the beauty and humanity and true need for endless questions. The drive to continue to wonder, to hope, to strive in the middle of this journey we call "life."

However, in the same breath, I can also see the destruction that accompanies endless questioning.

Because see, when we don't ever find a place to stop, a time to accept, then we are destroying ourselves mentally, emotionally, and spiritually. We are putting ourselves in a position to never acknowledge that there IS a final answer. Which creates a never ending loop of mistrust, skepticism, and even self-divinity. The place where we can no longer come to a conclusion on a matter, is the time where we are our own god. We can't trust any one to have the answer, no one can find the end of a matter, therefore, it is still left to be discovered.

Discovered by whom? Why, ourselves, of course, because that is the only one we can depend on when it comes down to it, right? If this one or that one can't have a definitive answer for something, then who does?

Can God?

And if He does, then some answers are already made available. They can be known. That has to be definite. Infinite. If it isn't, then God is not who He says He is.

There is wisdom, and knowledge, and truth to be had. There always has been.

****

"On a gut level, it is why the surety with which some people navigate complex issues of life feels foreign, even fabricated to me. I am skeptical of people who “have it figured out.” "


Yet, there has to be something that can be figured out. Wouldn't you agree? Let's get basic:

I am a girl.

Period. End of story. There is no further question on that fact. Perhaps YOU aren't too sure about what YOU are, but in my case, there is only one answer:

Girl.

But, let's get deeper:

The earth is round.

Well, there was a time when this was a controversial topic. There wasn't a correct answer to be had. And those who thought they had it "figured out" were either proven to be very right, or very wrong. But Neil Armstrong stood on the Moon, and could conclusively say that the Earth is indeed round, and not flat as was previously assumed.

So this is a known fact. Again, there is no questioning this statement. And if some gentleman from a foreign tribe located deep in the mountains of Laos argues vehemently with me on this point, because he's never been taught otherwise...

...well, that doesn't change the truth of the matter.

In this case, I am the one who has it "all figured out." I am the one with supreme knowledge. With the indisputable fact. There is nothing prideful about that. I cannot change it, rearrange it, or dismantle it even if I tried. You know, it's a matter of "don't shoot the messenger!"

So, let's take it up a few notches:

There is a right way.

Oh, now, this is a biggie. And I believe Mr. Haseltine had concepts of this depth in mind when he wrote what he did. That such philosophical and intangible conclusions should not, could not be broken down into something so meagerly simple. If we make statements of this brand of finality, are we truly being pompous, or are we simply being the messenger?

I would argue for both.

In a court of law, you cannot take the stand to testify on a matter where you have no experience. If you do, you will quickly be judged incompetent and scorned profusely.

Yet, this is how so many of these deep questions are answered. In arrogance. Spit around by drunkards who try to weave and bobble their way into Common Acceptance. You cannot take what they say as Truth, even though they have it "figured out." Credibility is key.

And if that is the case, then credibility is trust. Trust is the ability to accept. Acceptance holds weight now. And messengers can be what they say they are, and can say they are what they have been:

Owners of Answers.

This is not something to shy away from.

****

"There is an art to, “the next question.” It is mystery that fuels passion. It is awe and wonder at the unknown that draws our gaze heavenward."


Above all, I truly believe that there are great questions to be asked, and truly, even greater answers to be had. Both have their rightful place: questions not too arrogant to keep us in a constant state of unknown, and answers not too dismissive to keep us from questioning when it really matters. I can't see why we can't continue to question things, as long as we are also willing to say, "Ok, that settles it." when it is spiritually, mentally, and emotionally pivotal.

And on that note, sometimes those things are vastly different from one person to the next. One person's need to look deeper, does not trump another's need to set a standard. Or vice versa. This is where respect comes into play. I can respect the fact that you haven't settled on an answer yet, if you respect the fact that I have, and will act accordingly.

Because no matter how deep the concept, how unfathomable the mindset, it can still be as plain as the nose on their face---to someone. And they can't change that. Just like I can't change the undeniable truth that I am a girl. Please don't try to change my mind. I have the answer. But if you would like to disagree, I will try to patiently hear out your theory, but I doubt there will be enough exchange of ideas to warrant more questioning on my part.

When we stop acknowledging the fact that we know something to be true, then we also deny the fact that there is a God who designed Truth in the first place. It doesn't mean that there isn't mystery and wonder enough to sustain a person for a lifetime. It simply means that we are Ok...

...with the answers that we are not responsible for establishing,

...and the questions that we were created to be asking.










*With all due respect to Mr. Haseltine, but I am assuming he meant "conjunctions" instead of "pronouns." Conjunctions connect ideas of thought within a sentence, whereas pronouns are specific nouns used to replace a noun by another name. As a self-proclaimed grammarphile, I was a little confused at first, but when I figured out what he meant, the thought's significance rang true.

Monday, February 07, 2011

It Feels Good to Feel Good


Sometimes we like to count...


Sometimes, we like to color...


...in the lines.

And sometimes, we're just happy to be happy.