Thursday, February 21, 2008

Movin on Out

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 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.

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.