Tuesday, June 8, 2010

Dreaming of home...

There's no place like home...there's no place like home. I am VERY jealous. Cayden got a little taste of home over the weekend. While the circumstances of his visit were sad (attending the memorial for his grandmother), and the weather was not particularly fabulous, he got to sleep in his OWN bed.

As of yesterday, we are 6 weeks and one day post transplant. The further away we get from April 26th, the harder it seems to even think that we were both actually in the hospital. These days, I am bound and determined to feel better, although I am entirely ready to beg for mercy at my Thursday follow-up appointment to see if they'll budge on that 6 month waiting time for my "other" surgery. If it weren't for those issues, I would be feeling pretty fabulous about now.

Regardless of that thorn in my "middle", I have made great improvements since my last post. A couple of weeks ago, I could barely make it from the parking lot to a few stores in the mall without being totally exhausted. That was week 4. Last week (week 5), I was tired of not being able to do anything, so I forced myself to push harder even though I was still tired. I began the week walking a mile, then two, and by Wednesday, I was up to walking 5 miles without resting! On Friday, Dan and I walked the infamous "Dish" next to the Stanford University campus - a 3.5 mile oval route which takes you around two sattelite dishes, perched on top of the hill, overlooking the campus. It reminded me a little of the Chambers Creek golf course walking trail in University Place...on steriods. If you decide to go counter clockwise, it seems like you never stop going up. On the way back down, it seems like a steep, quick drop in elevation. You've practically have to put on the brakes to keep yourself from propelling forward, but what a view from the top. The good news is that I made it all the way around, without stopping to rest. :)

Cayden's eating a lot more now and had gained 2 pounds since his Thursday appointment. Last week the doctors put him back on a medication called Vancomycin, a strong antibiotic he was taking prior to surgery that kept his Ulcerative Colitis under control. It's crazy, but the cost for that medication if we didn't have insurance would be over $7,000 per month! Thank God for insurance. Yesterday, his blood draw revealed that his new liver is working fabulously and his level of anti-rejection medication is perfect. His magnesium level has also finally improved on its own, so the docs have decided to cut him back to just 1 blood draw and clinic visit per week. We even talked about the "H" word - HOME! They usually start by monitoring once per week, then once every two weeks. After that, they could let us go home, BUT the catch is that he and one of the 4 parents will have to fly back once a month for a few months for a blood draw and clinic visit with the liver team here in California. Eventually that will change to every 3 months, then 2 times a year. I am in the midst of checking with our insurance company to see if they will cover our travel costs to get to/from Stanford for these visits. Cross your fingers that we'll be home before the month's out!

It can be difficult to have so much idle time on our hands these days. One can only partake in so many walks, and I've given up on watching TV in trade for a more intellectually stimulating activity - reading books. Yes, after finishing all of the books I had purchased or brought with me, I have secured myself a Menlo Park Public Library library card! It's actually been fun. Since checking out 4 books on Friday, I have already read 2 and am half way through the third. If you've never read "In a Sunburned Country" by Bill Bryson or "Blink" by Malcolm Gladwell, they're definitely worth a read. The Bryson book is a hilarious account of his experiences researching and exploring all things Australia. Throughout the book, he perseverates on the fact that compared to the rest of the world, Australia is home to the largest number of critters that can kill a person. I'm not so sure I want to go there now! The book by Gladwell is a facsinating look at how it takes just seconds for our unconscious intuition to kick in - an easy read with lots of research that makes you say "Hmmmmm". The book I am currently reading is for people who are fanatical about punctuation and grammar (anal me again). In Eats, Shoots & Leaves, Lynne Truss - an English writer and journalist, explores the comical side of how lax societies (both English and American) have become regarding the use of punctuation - especially the apostrophe. It reminds me of the time I was driving through University Place on the way to Curtis High School and saw a city sign stating "Delivery's Only". I was mortified. The worst part of it was that the sign remained that way for several months. One day I noticed that someone had finally done something about it - it read "Delivery Only". How is it that a "public" sign like this can actually be posted in public with such a gross error? If you've ever found yourself "editing" just about anything you read, this book is for you!

As you can see, I like interesting non-fiction. I tend to gravitate towards books that help me "become a better me", but with the last few, I've been working on expanding my literary horizons. If you've got a great recommendation, let me know, and I'll put it on my summer reading list. I'll need it - we're canceling our cable when we get home!

Well, that's all from sunny Menlo Park, California. I'm trying really hard to push some sun up to Washington for everyone. I hope you appreciate my efforts!

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