Great news, gang, we're comin home!
After a 4 months, 7 days, and a dozen or so hours (not that anyone is counting) we are preparing for our return home! Our ETA is March 5th, Leo's 13th birthday.
As excited as I am to be on our way, the road ahead feels a little daunting: for months we have been surrounded and supported by world-class medical professionals who have been available 24/7 to help trouble-shoot and steer us clear of pitfalls; Leo and I will have to reconstruct that medical framework from scratch once we are Portland again. And although Leo has made remarkable stride these past months, he still has a very long and difficult journey ahead of him
Thursday, February 21, 2008
Thursday, February 7, 2008
The Road Ahead
It has been amazing watching Leo these past few weeks, he is growing stronger ~and growing up~ so fast that sometimes when I glance over at him I could swear there has been a quantum shift just in that moment. It's not just that he is regaining muscle mass, or even that he is growing taller: it's his face and the way he holds himself, he is becoming a teenager. Doubtless some of this maturity is born of all that he has been through these past few months, and the stress of living at Ronald McDonald House (you have no idea), which makes me a little sad, but ultimately, the fact that he is growing up ~that he is now going to have the opportunity to grow up~ is all to the good.
He continues to amaze and impress the doctors up here with his speedy and steady recovery, and as we approach the 2 month mark, we are beginning to make preparations for our return home (hopefully in March). He still has a long journey, and a tremendous amount of work ahead of him, but Leo's determination to return to the amazing community that has rallied behind him has been the focus of his motivation to get better and do the hard work of recovery.
Having that support is even more important now, because although our insurance covered the cost of the transplant surgery, we have gotten word that they will not cover is ongoing treatment here at Seattle Children's Hospital once we are discharged to Oregon, and although returning home will be an exciting milestone that we are very much looking forward to, even then his liver will require ongoing monitoring and treatments, and he will have months of physical therapy yet ahead of him; and of course, he will require 'round the clock care and attention that will prevent me from returning to school or work for the time being.
To facilitate fundraising, and provide both accountability and a tax deduction, we are closing the pay pal account (which takes a cut of the contributions), and are working with the American Liver Foundation (which takes nothing)
There are now three ways to make a donation to Leo's Fund:
By mail: Make your check payable to the American Liver Foundation Transplant Fund. Write "Leo Westwind" in the memo line of the check. Mail your donation to "American Liver Foundation; 1425 Pompton Avenue; Cedar Grove, NJ 07009-1000".
By phone: Please call Joan Gallagher at 212-668-1000 ext. 224 and be ready to provide a valid credit card number.
For Cash Donations, or if you are hosting a collection jar at your place of business: Make a donation by mail or in person to any Umpqua Bank branch. Make any checks payable to "Leo Westwind Medical Fund".
It may to update web pages, so please disregard the PayPal button on pages raising money for Leo.
He continues to amaze and impress the doctors up here with his speedy and steady recovery, and as we approach the 2 month mark, we are beginning to make preparations for our return home (hopefully in March). He still has a long journey, and a tremendous amount of work ahead of him, but Leo's determination to return to the amazing community that has rallied behind him has been the focus of his motivation to get better and do the hard work of recovery.
Having that support is even more important now, because although our insurance covered the cost of the transplant surgery, we have gotten word that they will not cover is ongoing treatment here at Seattle Children's Hospital once we are discharged to Oregon, and although returning home will be an exciting milestone that we are very much looking forward to, even then his liver will require ongoing monitoring and treatments, and he will have months of physical therapy yet ahead of him; and of course, he will require 'round the clock care and attention that will prevent me from returning to school or work for the time being.
To facilitate fundraising, and provide both accountability and a tax deduction, we are closing the pay pal account (which takes a cut of the contributions), and are working with the American Liver Foundation (which takes nothing)
There are now three ways to make a donation to Leo's Fund:
By mail: Make your check payable to the American Liver Foundation Transplant Fund. Write "Leo Westwind" in the memo line of the check. Mail your donation to "American Liver Foundation; 1425 Pompton Avenue; Cedar Grove, NJ 07009-1000".
By phone: Please call Joan Gallagher at 212-668-1000 ext. 224 and be ready to provide a valid credit card number.
For Cash Donations, or if you are hosting a collection jar at your place of business: Make a donation by mail or in person to any Umpqua Bank branch. Make any checks payable to "Leo Westwind Medical Fund".
It may to update web pages, so please disregard the PayPal button on pages raising money for Leo.
Monday, February 4, 2008
Interesting Times
One of the ironies of running a blog, I have found, is that when life is most interesting you have the least time and energy to write about it. And so it has been here.
Things had been going along so smoothly there hardly seemed anything to write home about, mostly we had been falling into a rhythm of medical appointments and physical therapy sessions. Then things started happening, most notably getting back some worrisome results from blood tests taken towards the end of last week.
Last week Leo had been negotiating with his docs to be able to visit Portland, this week the docs are concerned we might potentially be looking at a viral infection, or possibly "a little rejection". I, for one, have never been a big fan of rejection in any form, especially when it involves one of my kid's major organs.
More will be reveled as the week proceeds, keep a good thought.
Things had been going along so smoothly there hardly seemed anything to write home about, mostly we had been falling into a rhythm of medical appointments and physical therapy sessions. Then things started happening, most notably getting back some worrisome results from blood tests taken towards the end of last week.
Last week Leo had been negotiating with his docs to be able to visit Portland, this week the docs are concerned we might potentially be looking at a viral infection, or possibly "a little rejection". I, for one, have never been a big fan of rejection in any form, especially when it involves one of my kid's major organs.
More will be reveled as the week proceeds, keep a good thought.
Monday, January 7, 2008
STP?
Well, kids, I'm not sure if this is a good thing or not, but I finally relented and had my Xtracycle sent up here (thanks, mom!).It is a good thing in that I haven't been able to ride for months. Although Leo and I normally bring our bikes with us to Seattle, we had to leave them behind for repairs this trip.
On the other hand, I went to the trouble of having it sent up because our stay here is dragging out to such an inordinate extreme that there seemed no sense in trying to do without the essentials any longer. The downside to having my bike and blender here is that, increasingly, it feels as though we ourselves are being transplanted here.
With the blender here, I have been whipping up organic smoothies to tempt Leo's tummy, and hopefully speed his already breath-taking recovery; and with my bike here I have been thoroughly enjoying ridding the bike trails near Ronald McDonald House. Perhaps Leo and I can use the Xtracycle to blend in with the STP crowd and make our escape back to Portland that way!
Tuesday, January 1, 2008
Leo's Biscuit Company
Not one to let a little thing like major surgery slow him down,Leo is forging ahead with his plans to launch a dog biscuit company.Like most kids his age, Leo has tried his hand at selling lemonade, but he quickly lost interest. He isn't passionate about lemons; he is passionate about animals, as am I, which is part of how this pursuit of his has become a family affair.
I previously worked as a veterinary technician and more recently have self employed as and organic baker and caterer, so developing healthy recipes that dogs really like quickly became a family project, and, before his health took a nose dive, we were busily whipping up treats for a small but loyal fallowing.
Leo is no figurehead in this fledgling business, on the contrary, he has a hand in every aspect of the company, from choosing the cookie cutters and packaging to baking the biscuits. All the ingredients are human grade and certified organic.
He tells me that I wouldn't have to return to school if I worked for Leo & Co., and the simple fact is that I cant return to school or work while he is recovering, so look for his taisty treats coming soon, on-line and in stores, and perhaps the kid will be able to keep me in a style to which I would like to become accustomed.
Monday, December 31, 2007
The New Year is Not The Biggest Transition
It is hard to imagine anything more fundamental to ones sense of self than ones appearance. Issues of race and gender aside, our notions of who we are is inextricably entwined with our notions about the flesh that contains us.
It should be no surprise, then, that Leo is mourning ~and a bit shocked by~ the gradual loss of his beautiful bronze skin. And so am I, just a little bit.
The doctors here can not fathom why he would not want to be rid of one of the most visible symptoms of his liver disease. Lost on them is the fact that, in addition to being a shocking transition that he had not anticipated, it is a loss of something fundamental to who he was, and to how he had always thought of himself.
His color was uniquely his own, and for the most part, for much of his life, it was beautiful. He and I spent so much time out doors, often for long stretches in the high country of Oregon's wilderness and that much closer to the sun, that his slightly jaundice skin took on a brilliant and striking shade of bronze. With his lovely flaxen hair tumbling down his dark shoulders, he looked the very picture of "mother nature's son". People complimented him on the gorgeous tone of his skin, even envied it, and to Leo this seemed only right and proper.
Who is he, then, without his mane of gold and skin of bronze? I, of course, would love him every bit as much if he were bald and green. But for him almost too much to bare, on top of everything else. On top of being separated from his community, friends and pets, on top of the isolation of life in the hospital, on top of accepting a stranger's liver in his body and the massive scar that came with it ~on top of everything~ he is having to come to terms with a radically new identity, and along with it, a strange and unfamiliar body that neither looks nor feels like anything he has ever known
It is going to be an interesting year, many changes yet to come.
It should be no surprise, then, that Leo is mourning ~and a bit shocked by~ the gradual loss of his beautiful bronze skin. And so am I, just a little bit.
The doctors here can not fathom why he would not want to be rid of one of the most visible symptoms of his liver disease. Lost on them is the fact that, in addition to being a shocking transition that he had not anticipated, it is a loss of something fundamental to who he was, and to how he had always thought of himself.
His color was uniquely his own, and for the most part, for much of his life, it was beautiful. He and I spent so much time out doors, often for long stretches in the high country of Oregon's wilderness and that much closer to the sun, that his slightly jaundice skin took on a brilliant and striking shade of bronze. With his lovely flaxen hair tumbling down his dark shoulders, he looked the very picture of "mother nature's son". People complimented him on the gorgeous tone of his skin, even envied it, and to Leo this seemed only right and proper.
Who is he, then, without his mane of gold and skin of bronze? I, of course, would love him every bit as much if he were bald and green. But for him almost too much to bare, on top of everything else. On top of being separated from his community, friends and pets, on top of the isolation of life in the hospital, on top of accepting a stranger's liver in his body and the massive scar that came with it ~on top of everything~ he is having to come to terms with a radically new identity, and along with it, a strange and unfamiliar body that neither looks nor feels like anything he has ever known
It is going to be an interesting year, many changes yet to come.
Friday, December 28, 2007
Mad Woman of the Ward
After striving to be the epitome of grace and serenity for low these past 2 months, after having nurses tell me I am the coolest mom they have ever met, the Charge Nurse "threaten" to hire me, and a doctor tell me it is a pleasure to watch me with Leo; I hit the wall. Although the docs are treating us with a tad more deference, I suspect I now have a bit of a reputation.
Hospitals are not empowering places, and, with their litany of policies and arbitrary rules, they are no place for a couple of Bohemian-radical-nonconformist-pagan outlaws like Leo and I. And making the litany of policies and arbitrary rules even more maddening is the fact that every hospital employee we encounter seems to interpret them differently, so nothing is consistent. Then there are all the crazy-making issues that crop up: one doc told me, in the hours after Leo's surgery, to plan to be released from the hospital by weeks end; other docs have said to expect to be here for month.
We have had 5 rooms over the past 6 weeks, and where, early on, the accommodations struck me as similar to monastic cells, it now strikes me as more akin to a prison cell, or perhaps the Hotel California. We are both SO ready to go home.
The quandary is, Leo has a long road to recovery ahead of him, and yet hospitals are not proper places to recover one's health, and yet in this culture it is bloody difficult to find the better alternatives that doubtless exist.
In a sense, the fact that our insurance company has already made clear that they will not pay for follow up care is freeing: it releases up into the great wide open of possible healing paths. Once Leo is fit to travel, he and I will head home, into the arms of our community of support, to his naturopaths and other healers who can shepherd him on his way back to health.
Hospitals are not empowering places, and, with their litany of policies and arbitrary rules, they are no place for a couple of Bohemian-radical-nonconformist-pagan outlaws like Leo and I. And making the litany of policies and arbitrary rules even more maddening is the fact that every hospital employee we encounter seems to interpret them differently, so nothing is consistent. Then there are all the crazy-making issues that crop up: one doc told me, in the hours after Leo's surgery, to plan to be released from the hospital by weeks end; other docs have said to expect to be here for month.
We have had 5 rooms over the past 6 weeks, and where, early on, the accommodations struck me as similar to monastic cells, it now strikes me as more akin to a prison cell, or perhaps the Hotel California. We are both SO ready to go home.
The quandary is, Leo has a long road to recovery ahead of him, and yet hospitals are not proper places to recover one's health, and yet in this culture it is bloody difficult to find the better alternatives that doubtless exist.
In a sense, the fact that our insurance company has already made clear that they will not pay for follow up care is freeing: it releases up into the great wide open of possible healing paths. Once Leo is fit to travel, he and I will head home, into the arms of our community of support, to his naturopaths and other healers who can shepherd him on his way back to health.
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