Lazy cut and paste

I'm going to be blacklisted from Blogger, if I keep this up. ;)

But, here's the latest - I just didn't have much else to add, so I thought I'd copy an email I recently sent out to some bracing/casting moms I know.

Dr. K is an advocate for the Providence (nighttime bending) brace. We've talked, at length, to several orthotists and our local surgeon who says, "We aren't naive enough to think that we know what kind of brace is the best for all curves. We're just now doing a global study that follows all kinds of scoliosis and all kinds of curves to see which works for what type. So, if you want to do providence, we're fine with that."

Okay, good. BUT - I can't find a darn orthotist who agrees. Dr. K says he will no longer do long-distance bracing because it
requires too much adjusting (we're about 8 hours away). I agree. It makes sense.

So, I called our local Shriners and they only do Bostons, which I definitely don't want because of the rib compression (it
wrecked his developing ribs at 10 months) and because it's a 23 hour a day brace. I have read that the bones can become compromised (deteriorate) and make them less stable for future potential surgeries. They (at Shriners) claim that the spine has to be load-bearing to correct and would not waver from that perspective. Obviously, they don't deal with much infantile scoliosis (based on our own experiences there).

I contacted the Providence manufacturer (spine tech?) and they gave me the names of two orthotists - K, who is local to us, and B, who is about 4 hours from here. K called us back first. He has made providence braces before, but the youngest child was 6. He doesn't do them very often, but seemed willing to try with Jack. However, the Providence people said that B was, by far, more experienced with them. And, Dr. K always says that a brace is only as good as the person who makes it. So, we wanted experienced.

After over a month of phone tag with B (hopefully not indicative of the quality and responsiveness as a health care provider) he called this morning. He, apparently, thinks that providence are "okay" and has used them on kids as young as four - but he really uses his own hybrid brace for most kids. He said it's based on the callibus(?) and he's designed it for use on infantile scoliosis. He uses it for single thoracic curves and has braced curves into the 50s. He said they resolve in the brace or at very least get better. His 50° patient now has a 20° curve just using this brace (but we all know it could very well be a resolving form of infantile scoliosis). He says it's designed for as much use as we need it - either all day or only all night. He also claims it's adjustable for growth, so it should last up to two years whereas, he claims, "you'd be lucky to get a year on a providence at that age." (Keeping in mind our insurance coverage is crap and we will likely pay out of pocket for a huge majority of this one, plus any subsequent braces in the next three years).

He said he is calling Spinal Tech (the providence company) to see if they know of anyone who has used providence on a child as young as two. (If I had spoken with him, I could have given HIM a few names, but I digress.) He said its probably rare because its hard to get a child that small to fit into the device with success. (and we know that in the realm of progressive infantile
scoliosis, it has been used successfully. I specifically asked Dr. K about the Mehta kids over the years that did not totally
resolve in casting. He said they are ALL maintaining their correction - and considering how many IS patients he's had, I trust him before this orthotist, you know?)

Anyway - any thoughts or ideas? Input? (Comments are disabled here, so you have to know my email) :)

Sometimes I hate being in the decision making position.

10 days

Ten days until we can remove this cast.

This one went by quickly, didn't it? Or, perhaps it's just the rush of the season. That time from Halloween to Thanksgiving to Christmas goes so fast anyway. This year my Mom is coming to town right in the midst of that Turkey to Santa time, making it go even faster for us. And, of course, another cast.

This cast would be number, what, nine? Nine, I think. 16 months. It goes without saying that we're so ready to be finished. But, like I hear so many times from other casting moms, we want it finished when it's meant to be finished - and making that switch is so nerve-wracking. What if we kept going? Would we push through the plateau? Resolve more rotation? Improve rib deformity? Improve RVAD? Push off surgery for another year? Another decade? Forever?

Like much of medicine, it's a guessing game. We've learned over this last 18 months that all we can do is guess. We try to get the most information and make the most educated guesses, but when it comes down to it - it's all unpredictable.

I recently met another Mom online who has a child with Neurofibromatosis. She mentioned that Cardinal Glennon was fantastic and, in her experience, superior to Children's - so we may take Jack in for a second opinion there. We have all this time anyway, might as well do something to fill it, right?

So, again - we wait. Jack isn't eating anymore, really. He likes larabars and envirokids bars (which we recently discovered have almost zero nutritive value). He ate eggs for about four days in a row, then stopped. He likes cheese sometimes and chips always. But, mostly he drinks. I can manage to get some VitaminWater in him, which is a favorite ("Orange vita-water, Mom"). But, when it comes to solid foods - not much luck. He isn't even eating noodles much lately, which are his favorite.

Last night he begged for his cast to come off so he could play in the tub with his sisters. They had his Nemo toys out, swimming around, and he was no longer content to just reach over the edge and play. "Cast off!!!!" It breaks my heart. Some days we'd welcome the news that casting is no longer going to help. But, then we go from 40s to 20s and it seems like a no-brainer. We have to keep swimming.

Oil and Water..melon

Today is the day we craft our Christmas treats. My Aunt is coming over to help and we've finally unpacked all of our supplies this afternoon in preparation. A shout out to Bramble Berry who makes the best quality bath goodies and who pleasantly surprised me with two free items! Their customer service is fantastic and their products are the best. We played a game of "guess that scent" and were able to clearly pick our favorites. Mine were yuzu, a kind of asian citrus fruit, and watermelon.

And, speaking of oils, I found some in the garage aside from the fragrance variety. This is never good. John checked the parking lot at the office, but it doesn't appear to be actively leaking this afternoon. He's taking it up to our local oil change shop this afternoon and hoping they can find a source. We need to take it into the shop soon since our windshield has been obliterated. After just six months, we had three separate chips in the windshield, all of which spidered out. Our original plan was to have those spots repaired, versus a total windshield replacement. However, Friday night we came out to the car to change Jack when it was snowing just a bit. I had heard a thump on the windshield while driving the week before, but never did see a new spot. Apparently, the new spot was below that black strip at the bottom, and when I cranked the defrost it was enough to spread the crack across the entire length. We literally watched it spread all the way across, then back down.

I still suspect that Toyota put sub-standard glass in the 2008s. Our 2005 never had a single chip, despite driving on the same highways behind the same gravel trucks and trash haulers. We got hit with countless rocks out here, and I don't know how this windshield could be so sensitive while the other was not - but they claim the windshields are the same.

Sickness

Alas, it has struck again. It appears I have been hit hardest and from the lethargy and malaise, I imagine it's got to be vasculitis.

What? Not vasculitis?

Probably para neoplastic syndrome, then.

I hope at this point my love of Mr. Stuart Little has become apparent and the diagnosis of hypochondriacism is not floating around your head. I've spent far too many nights watching House, but that snarky charm and sarcastic wit just suck me in.

Okay, so it's probably just a virus - maybe even the flu. But, it feels like something really complicated and awful at the moment and that's somehow validating. So, myeh.

Stay well. Wash your hands. Trust me on this one. It's not worth it.

Jack Announces The Winner!

Yes We Can

There is hope today. Hope and a lot of tears - but this election, they are tears of joy. They are no longer tears of crisis and fear and a recession that knocks us on our backs. As I went to sleep last night, and held my boy close to my heart as he snuggled in for sleep, I heard these words that touched my soul profoundly.

I was never the likeliest candidate for this office. We didn't start with much money or many endorsements. Our campaign was not hatched in the halls of Washington. It began in the backyards of Des Moines and the living rooms of Concord and the front porches of Charleston. It was built by working men and women who dug into what little savings they had to give $5 and $10 and $20 to the cause.

It grew strength from the young people who rejected the myth of their generation's apathy who left their homes and their families for jobs that offered little pay and less sleep.

It drew strength from the not-so-young people who braved the bitter cold and scorching heat to knock on doors of perfect strangers, and from the millions of Americans who volunteered and organized and proved that more than two centuries later a government of the people, by the people, and for the people has not perished from the Earth.

This is your victory.

And I know you didn't do this just to win an election. And I know you didn't do it for me.

You did it because you understand the enormity of the task that lies ahead. For even as we celebrate tonight, we know the challenges that tomorrow will bring are the greatest of our lifetime -- two wars, a planet in peril, the worst financial crisis in a century.

Even as we stand here tonight, we know there are brave Americans waking up in the deserts of Iraq and the mountains of Afghanistan to risk their lives for us.

There are mothers and fathers who will lie awake after the children fall asleep and wonder how they'll make the mortgage or pay their doctors' bills or save enough for their child's college education.

There's new energy to harness, new jobs to be created, new schools to build, and threats to meet, alliances to repair.

The road ahead will be long. Our climb will be steep. We may not get there in one year or even in one term. But, America, I have never been more hopeful than I am tonight that we will get there.

I promise you, we as a people will get there.

There will be setbacks and false starts. There are many who won't agree with every decision or policy I make as president. And we know the government can't solve every problem.

But I will always be honest with you about the challenges we face. I will listen to you, especially when we disagree. And, above all, I will ask you to join in the work of remaking this nation, the only way it's been done in America for 221 years -- block by block, brick by brick, calloused hand by calloused hand.

Let us remember that, if this financial crisis taught us anything, it's that we cannot have a thriving Wall Street while Main Street suffers.

And to those Americans whose support I have yet to earn, I may not have won your vote tonight, but I hear your voices. I need your help. And I will be your president, too.

This election had many firsts and many stories that will be told for generations. But one that's on my mind tonight's about a woman who cast her ballot in Atlanta. She's a lot like the millions of others who stood in line to make their voice heard in this election except for one thing: Ann Nixon Cooper is 106 years old.

She was born just a generation past slavery; a time when there were no cars on the road or planes in the sky; when someone like her couldn't vote for two reasons -- because she was a woman and because of the color of her skin.

And tonight, I think about all that she's seen throughout her century in America -- the heartache and the hope; the struggle and the progress; the times we were told that we can't, and the people who pressed on with that American creed: Yes we can.

At a time when women's voices were silenced and their hopes dismissed, she lived to see them stand up and speak out and reach for the ballot. Yes we can.

When there was despair in the dust bowl and depression across the land, she saw a nation conquer fear itself with a New Deal, new jobs, a new sense of common purpose. Yes we can.

When the bombs fell on our harbor and tyranny threatened the world, she was there to witness a generation rise to greatness and a democracy was saved. Yes we can.

She was there for the buses in Montgomery, the hoses in Birmingham, a bridge in Selma, and a preacher from Atlanta who told a people that "We Shall Overcome." Yes we can.

A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination.

And this year, in this election, she touched her finger to a screen, and cast her vote, because after 106 years in America, through the best of times and the darkest of hours, she knows how America can change.

Yes we can.