Just a heads up - while we're waiting for print versions of the boy's NaNo books from last November, they are now available on Amazon for your Kindle for $4.00 each. A small percentage of those royalties actually go to the boys, but you can also borrow it for free if you're a Prime member (and if you're not, why not? Amazon Prime is the coolest thing since the Fonz). Links here:
The Adventure by Brennan J
The Angel's Apprentice by Rich Johnson
In other news, we're headed to Hershey, PA the second week of March for Brennan's birthday. I have an appointment with a cardiologist at Penn State Med Center that week, and we're going to look for houses while we're there. We'll keep everyone updated.
2/21/13
Here, There, & Everywhere
Hello all. Big News here, even for gypsies like us.
We've been semi-settled in Springfield, Mass since about October of last year. We like it here for the most part, but there is very little in the way of homschooling groups. The boys are involved in archery and fencing, but they spend most of their time on Skype with various friends from Pennsylvania, especially The Foleys (whom are featured in nearly every post on this blog starting in March of 2011). But honestly, it hasn't felt like home. Note the lack of blog posts. We've all been a little "blah" about the whole thing, but resolved to staying here because it's close to my doctors in Boston. This has been the goal from the beginning, due simply to the fact that my heart disease is rare and the particular case of the disease is unique in itself. We found no doctors elsewhere that were as knowledgeable about it than the Boston/Tufts Cardiology group.
At an appointment last Thursday, my cardiologist had a serious conversation with us about the road to a transplant, and several things had changed since our last visit.
Firstly, the team there has discussed the fact that as my heart failure progresses, I'm having little to no trouble because of the HCM. But because of the damage the HCM has done to my heart over the years, I am having very typical heart failure symptoms for someone in need of a transplant. In other words, the HCM aspect of my care isn't nearly as important as it was a year ago, though still an important issue in my care up until a transplant. I've been primarily seeing the transplant doctor at Tufts, while the HCM doctor is only consulted occasionally.
Secondly, the waiting time for people in even worse shape than me has risen dramatically in this region, and at Tufts, over the last six months. Without getting into the gory details, they informed us that people in my condition aren't even getting accepted to move up the list because there are more urgent cases that have been waiting, living in the hospital for almost a year now. Too many sick people, not enough hearts. Check that donor box on your driver's license, people. It's rough out here.
This puts us in a difficult position. We expected a lengthy hospital stay, but not 10-12 months. We live an hour and a half from Tufts, where I would be. It's almost impossible to imagine how that would work, not to mention the expense of the rest of the family travelling back and forth, hotels, food, missed work, etc. Our goal was to get closer to Boston, but honestly, we're as close as we can get before cost of living outpaces nurses salary. We love Boston, LOVE IT. But it's expensive.
We started exploring alternative transplant centers when we got home, looking specifically at Hershey, PA because of Penn State Med Center where Christie took her first travel contract. Again, if you're a regular here, you know we have a special place in our hearts for the Hershey/Harrisburg area because of the great experiences there, and mostly because of the wonderful homeschool group (INCH) and our friends, the Foleys.
Penn State in Hershey has a shorter average waiting time for people in my situation 3-4 months. This is not to say I need to be transplanted soon - I am still a "status II" and have to move up two more rankings on the waiting list to even be considered for a heart. I'm not sick enough yet. But when that time comes, the prospect of living at the hospital for 4 months instead of 12 is very appealing. There is a good transplant team there with a fairly strong background in HCM, according to the HCM patient advocate organization, my doctor at Tufts, and an HCM patient currently living there, whom I was able to track down. It isn't Tufts, the centrifuge of HCM study and treatment in the country, but it's good enough for what I need now. Better to have a good doctor who can get you through a 3-4 month wait, than the best doctor who has to get you through a 10-12 month wait. Plus the longer I'm in that condition, the more danger of problems with other organs.
So by moving to the Hershey area, we gain many things:
1) A shorter wait time once I get sicker
2) A big support system with the homeschool group that we still feel very much a part of
3) Being near our best friends
4) Christie being able to work at the hospital where I'll receive care, which should take the sting out of some medical costs
5) The ability to live within 20-30 minutes of the hospital
6) Closer to Philly, D.C. Baltimore, and North Carolina and Arkansas (just by a few hours) where our families live.
7) A slower paced lifestyle in a quaint little Pennsylvania town chock full of farmer's markets, old bookstores, community theaters, mom and pop businesses, great food...all nestled into the beautiful PA countryside dotted with dairy farms and creameries.
8) Cheaper cost of living, less driving to the doctor, etc.
Christie is assured of several jobs or contracts with a 30 day notice. Our landlord here has agreed to terminate our lease as soon as he finds new tenants. So we're about to enter that chaotic time of trips to PA to house hunt, packing up here, applying for jobs, and trying to replant ourselves. We feel confidant that this will be the last time. We can foresee being completely relocated by the end of May, depending on the lease situation here.
Life is funny. We've had a great time moving around, but the stress of my medical situation has made it difficult. We feel like a huge weight has been lifted from our shoulders in so many ways. It's scary to leave the shelter of Tufts because they have been an oasis for us after so many years of bad medical treatment. But overall this is for the best. At the cost of sounding whiny, we feel like we deserve a break. If there was one thing we could have (besides a cure) in this situation, it would be the go ahead to move back to PA where we have so many friends. We know Arkansas isn't an option because of the medical care, though we truly miss all our friends and family there. Honestly, PA has become our new home in a sense, the place we go for vacation, where we celebrate birthdays, and where we intended to settle post-transplant. We've been dealt a really crappy card of late, and it's like we were just handed an Ace.
You can read the Foley's perspective on this HERE. We're not sure who is more excited.
We've been semi-settled in Springfield, Mass since about October of last year. We like it here for the most part, but there is very little in the way of homschooling groups. The boys are involved in archery and fencing, but they spend most of their time on Skype with various friends from Pennsylvania, especially The Foleys (whom are featured in nearly every post on this blog starting in March of 2011). But honestly, it hasn't felt like home. Note the lack of blog posts. We've all been a little "blah" about the whole thing, but resolved to staying here because it's close to my doctors in Boston. This has been the goal from the beginning, due simply to the fact that my heart disease is rare and the particular case of the disease is unique in itself. We found no doctors elsewhere that were as knowledgeable about it than the Boston/Tufts Cardiology group.
At an appointment last Thursday, my cardiologist had a serious conversation with us about the road to a transplant, and several things had changed since our last visit.
Firstly, the team there has discussed the fact that as my heart failure progresses, I'm having little to no trouble because of the HCM. But because of the damage the HCM has done to my heart over the years, I am having very typical heart failure symptoms for someone in need of a transplant. In other words, the HCM aspect of my care isn't nearly as important as it was a year ago, though still an important issue in my care up until a transplant. I've been primarily seeing the transplant doctor at Tufts, while the HCM doctor is only consulted occasionally.
Secondly, the waiting time for people in even worse shape than me has risen dramatically in this region, and at Tufts, over the last six months. Without getting into the gory details, they informed us that people in my condition aren't even getting accepted to move up the list because there are more urgent cases that have been waiting, living in the hospital for almost a year now. Too many sick people, not enough hearts. Check that donor box on your driver's license, people. It's rough out here.
This puts us in a difficult position. We expected a lengthy hospital stay, but not 10-12 months. We live an hour and a half from Tufts, where I would be. It's almost impossible to imagine how that would work, not to mention the expense of the rest of the family travelling back and forth, hotels, food, missed work, etc. Our goal was to get closer to Boston, but honestly, we're as close as we can get before cost of living outpaces nurses salary. We love Boston, LOVE IT. But it's expensive.
We started exploring alternative transplant centers when we got home, looking specifically at Hershey, PA because of Penn State Med Center where Christie took her first travel contract. Again, if you're a regular here, you know we have a special place in our hearts for the Hershey/Harrisburg area because of the great experiences there, and mostly because of the wonderful homeschool group (INCH) and our friends, the Foleys.
Penn State in Hershey has a shorter average waiting time for people in my situation 3-4 months. This is not to say I need to be transplanted soon - I am still a "status II" and have to move up two more rankings on the waiting list to even be considered for a heart. I'm not sick enough yet. But when that time comes, the prospect of living at the hospital for 4 months instead of 12 is very appealing. There is a good transplant team there with a fairly strong background in HCM, according to the HCM patient advocate organization, my doctor at Tufts, and an HCM patient currently living there, whom I was able to track down. It isn't Tufts, the centrifuge of HCM study and treatment in the country, but it's good enough for what I need now. Better to have a good doctor who can get you through a 3-4 month wait, than the best doctor who has to get you through a 10-12 month wait. Plus the longer I'm in that condition, the more danger of problems with other organs.
So by moving to the Hershey area, we gain many things:
1) A shorter wait time once I get sicker
2) A big support system with the homeschool group that we still feel very much a part of
3) Being near our best friends
4) Christie being able to work at the hospital where I'll receive care, which should take the sting out of some medical costs
5) The ability to live within 20-30 minutes of the hospital
6) Closer to Philly, D.C. Baltimore, and North Carolina and Arkansas (just by a few hours) where our families live.
7) A slower paced lifestyle in a quaint little Pennsylvania town chock full of farmer's markets, old bookstores, community theaters, mom and pop businesses, great food...all nestled into the beautiful PA countryside dotted with dairy farms and creameries.
8) Cheaper cost of living, less driving to the doctor, etc.
Christie is assured of several jobs or contracts with a 30 day notice. Our landlord here has agreed to terminate our lease as soon as he finds new tenants. So we're about to enter that chaotic time of trips to PA to house hunt, packing up here, applying for jobs, and trying to replant ourselves. We feel confidant that this will be the last time. We can foresee being completely relocated by the end of May, depending on the lease situation here.
Life is funny. We've had a great time moving around, but the stress of my medical situation has made it difficult. We feel like a huge weight has been lifted from our shoulders in so many ways. It's scary to leave the shelter of Tufts because they have been an oasis for us after so many years of bad medical treatment. But overall this is for the best. At the cost of sounding whiny, we feel like we deserve a break. If there was one thing we could have (besides a cure) in this situation, it would be the go ahead to move back to PA where we have so many friends. We know Arkansas isn't an option because of the medical care, though we truly miss all our friends and family there. Honestly, PA has become our new home in a sense, the place we go for vacation, where we celebrate birthdays, and where we intended to settle post-transplant. We've been dealt a really crappy card of late, and it's like we were just handed an Ace.
You can read the Foley's perspective on this HERE. We're not sure who is more excited.
11/4/12
Odds & Ends
I know I haven't posted in awhile, but I have GREAT excuses.
1) We have a new puppy named Blitzy" (Blitz for short) and there is a lot of pee and poop.
2) Our furniture, boxes, books, toys, washer/dryer, etc. arrives here on Tuesday, courtesy of my awesome in-laws who are driving it up to us in a trailer and very uncomfortable truck. I intend to feed them well while they're here visiting. Total labor of love.
3) FM Archive project - you Taffers who follow this blog know what this means, but for everyone else: I help moderate a website called TTLG (Through The Looking Glass) that is dedicated to preserving the legacy of the now defunct Looking Glass Studios (the creators of games like Thief, System Shock, Ultima Underworld, etc.). Imagine something like a Beatles tribute site. So people make their own little game maps and missions (fan missions = FM's) using the tools from some of these games. This has been going on for 12 years and it's one of the most robust communities like this on the web - there are literally hundred's of these fan made missions, custom tweaks, contests, and reviews. Unfortunately, the database has been in neglect for about 5 years, so it's time to get it cleaned up, organized, repair links, etc. I'm only helping with it but getting all the tools running on my Win7 laptop again, and the research has been a bit of a time suck. (Yes, this is the same game and community I spent 5+ years working on a large fan made project with in the early 00's. The insanity never stops)
4) NaNoWriMo - I'm trying to be more serious about writing every day and sending out samples and queries to agents. With that in mind, I have been working feverishly to complete a draft of a book I've been working on since 2005, so that now in the month of November I can begin a rough draft on a project that's been circling my brain for a few years. The boys are also participating in NaNoWriMo this year so we're spending a chunk of the day, faces buried in laptops, checking each other's work and keeping word counts. So much fun, but also time consuming.
5) I've started singing in the studio with a local band and have been tasked with writing lyrics/vocals to 11-12 pre-existing songs. Lots of time caterwauling here at home and most of my Saturday afternoons are spent collaborating with the band. Lots of fun to be back in a casual, creative atmosphere. I have a lot of pent up lyrics and ideas.
6) School - the boys are moving really quickly in math and I'm spending quite a bit of time on Kahn academy trying to stay ahead of Rich. He's due to start algebra in a few weeks and I needed a major refresher. Brennan is about half-way through second grade math and will be finished with it before the end of the school year. At this rate, he'll be almost 2 years ahead by the time we start back next fall. Whew!
So I know I keep saying this, but we should be back to some semblance of normal life after we're completely settled in here and sink into our schedule a bit more. My goal is to post at least once a week if not twice.
In the meantime, you might enjoy THIS POST over at Sushi & Pizza, the blog of our great friends the Foley's. It's their angle on our trip to NYC this summer and it's a really fun read. We have so much fun with them anywhere we go, so it was awesome to do the Big Apple together, a trip we'll never forget.
9/18/12
Rolling To A Stop
Not much blogging lately, but it's because big changes are coming!
Christie has been offered not one, but TWO jobs at Baystate Medical Center here in Springfield, Mass. It looks like she'll continue as a full-time employee on the Thoracic ward (where's she's been since we got here), and filling in at the Cancer Treatment center when she has the time. She's actually been offered a job at nearly every place we've been assigned, but we really, really like the Springfield area and can see ourselves living here for quite a while.
Consequently, we're burning up the road looking for a house to rent in the area. We like the apartment complex we are in right now, but it's not in the greatest part of town, especially for the boys. Christie's contract will be up here on October 15th, so we need to have a place to live by then, or sign another 6-month lease here. We have our hearts set on an older place we found in a nearby town called Hadley. It's in a neighborhood, but the houses are very spread out, so lots of privacy. Beautiful view from all the windows, a nearby garden that we can eat from, plenty of yard for the boys. I'll post pictures if it works out. It's about 30 minutes from the city, but we feel like the academic and recreational activities in this area far outweigh the extra time Christie will spend on the road. Plus, the school system is fantastic in the even that the boys ever decided to re-enter public school . The area is chock full of colleges, libraries, coffee shops, music, art, and community events that make it feel like a small town, yet with all the amenities of a larger city. It reminds us a lot of our beloved Fayetteville and Rogers/Bentonville in the heart of the Ozarks.
Our furniture situation is quite complex, as we knew it would be. We have been living in furnished apartments through Christie's company since we hit the road last February. If you've seen the old posts, you know that we have our own kitchen stuff, bathroom stuff, the boy's toys, etc. but all of our "real" furniture is in storage in Arkansas, 24 hours away from here. It's going to take a considerable amount of time and money to relocate all of that, which is not easy to come by with Christie starting a new job. Our current plan is to use blow up mattresses and lawn chairs (which we already have with us) until such a time as we can afford plane tickets down, truck rental, laborers, and time off work, etc. Not sure how long that will be - hopefully mid-November, but possibly next spring. After all - we don't want to buy or rent temporary furniture when we have our own just waiting to be rescued from storage.
So it may be a camp-out for a few weeks or even months, but we're really liking the idea of a permanent job and semi-permanent home. We'll eventually look to buy something when we've had more of a chance to save up for a downpayment, and there are hundreds of beautiful New England homes to choose from when the time comes.
More details later. Sorry this isn't very snappy to read, but I wanted to get the information out there for everyone who's asking. We'll be very busy up until we get moved in, so I'll catch most of you on Facebook more than on here, but I promise I'll soon get back to weekly and bi-weekly posts asap. Thanks for reading!
Christie has been offered not one, but TWO jobs at Baystate Medical Center here in Springfield, Mass. It looks like she'll continue as a full-time employee on the Thoracic ward (where's she's been since we got here), and filling in at the Cancer Treatment center when she has the time. She's actually been offered a job at nearly every place we've been assigned, but we really, really like the Springfield area and can see ourselves living here for quite a while.
Consequently, we're burning up the road looking for a house to rent in the area. We like the apartment complex we are in right now, but it's not in the greatest part of town, especially for the boys. Christie's contract will be up here on October 15th, so we need to have a place to live by then, or sign another 6-month lease here. We have our hearts set on an older place we found in a nearby town called Hadley. It's in a neighborhood, but the houses are very spread out, so lots of privacy. Beautiful view from all the windows, a nearby garden that we can eat from, plenty of yard for the boys. I'll post pictures if it works out. It's about 30 minutes from the city, but we feel like the academic and recreational activities in this area far outweigh the extra time Christie will spend on the road. Plus, the school system is fantastic in the even that the boys ever decided to re-enter public school . The area is chock full of colleges, libraries, coffee shops, music, art, and community events that make it feel like a small town, yet with all the amenities of a larger city. It reminds us a lot of our beloved Fayetteville and Rogers/Bentonville in the heart of the Ozarks.
Our furniture situation is quite complex, as we knew it would be. We have been living in furnished apartments through Christie's company since we hit the road last February. If you've seen the old posts, you know that we have our own kitchen stuff, bathroom stuff, the boy's toys, etc. but all of our "real" furniture is in storage in Arkansas, 24 hours away from here. It's going to take a considerable amount of time and money to relocate all of that, which is not easy to come by with Christie starting a new job. Our current plan is to use blow up mattresses and lawn chairs (which we already have with us) until such a time as we can afford plane tickets down, truck rental, laborers, and time off work, etc. Not sure how long that will be - hopefully mid-November, but possibly next spring. After all - we don't want to buy or rent temporary furniture when we have our own just waiting to be rescued from storage.
So it may be a camp-out for a few weeks or even months, but we're really liking the idea of a permanent job and semi-permanent home. We'll eventually look to buy something when we've had more of a chance to save up for a downpayment, and there are hundreds of beautiful New England homes to choose from when the time comes.
More details later. Sorry this isn't very snappy to read, but I wanted to get the information out there for everyone who's asking. We'll be very busy up until we get moved in, so I'll catch most of you on Facebook more than on here, but I promise I'll soon get back to weekly and bi-weekly posts asap. Thanks for reading!
9/3/12
A New Year
It's hard to say "it's a new school year" when you do it like we do. I really don't like to think of school "starting" or "stopping" because it really doesn't. People have asked what the boys did all summer, and the answer doesn't sound all that exciting or educational at all.
They spent an inordinate amount of hours learning how to play the PC version of Minecraft.
That's pretty much it.
Of course we've had a week or two of visiting grandparents and extended family, some movie nights, some game nights, but not really that often. The wear and tear of moving every 3 months, then taking small trips to other places within those 3 month periods, has brought us to a season where we are very content to spend more time at home, even if we're staring at screens while we're here.
And yet, school didn't stop. The boys were busy learning how to build and break in Minecraft, negotiate and build with friends on the multi-player servers, and navigating the various social issues that come along with multi-player gaming. I have been a bit concerned about Brennan's lagging reading skills, and Rich's struggles with spelling at the end of spring when we took a break from daily lessons. But when Brennan read to me this morning, most of his stumbles and misuse of vowels were gone. Rich buzzed through a dozen spelling words we haven't worked on since May and nailed 99% of them. When I ask, "How do you know that word," the answer was invariably, "from typing and reading it in the Minecraft chat."
The main goal in this season of life, as we look toward settling permanently in New England and the possibility of public school (if they choose), is to foster more independence from me as a teacher. So rather than the somewhat helter skelter method of printing out materials the morning of, and filing them anywhere they won't get sucked up by the vacuum cleaner, I got organized. They each have a bin with several folders, one per subject. I plan the week, print the materials, put it in the folders, and they are responsible to get the work done and place it back in the folder by the next morning.
I always want to allow them plenty of time to pursue their individual interests (which right now is mostly Minecraft), I'm not spending as much one-on-one time instructing them as I have in the past. We generally have a math lesson and spelling/writing lesson every day, followed by either art, science, or something else they've shown interest in. Sometimes this could drag on all day because they expected me to stay nearby so they could check their work every so often.
This time around, I'm spending roughly 5-10 minutes actually teaching, if even that. Only when a new math or writing concept is introduced. I work through a few problems with them, then they're on their own for the rest of the day, to finish the practice problems, write the sentences, etc. whenever they choose - so long as they get it done before bed. We've also asked them to spend some time drawing, practicing piano, reading biographies, and excercising every day (in lieu of recess). We've spent tons of time on computer science, basic chemistry, and typing in the last two years, so we're taking a break from those to do more simple things that they tend to incorporate into their day anyway.
The great thing about this is it allows them to manage their own time, plan their work around meeting friends online if need be, or around chores and other interests. It allows me to instruct them in big picture concepts in the core subjects, and spend a little more time on once-a-week things like natural science, history, etc. And Dad has more free time to goof off. Win-win.
The first day went well, though I think they were a little overwhelmed with the amount of work we're expecting them to do on their own. It's our hope that giving them the freedom to do it on their own schedule will help blur the line between "school time" and "play time" so that it all just becomes "life."
8/17/12
Just A Quick Note
...to let you all know we're still here! Sorry it's been a while since an update. We've had family visiting and have been busy getting acquainted with Springfield. Updates soon on Rich's Birthday, Brennan's fencing, visiting family, Christie's job, etc.
Stay tuned.
Stay tuned.
7/25/12
Springfield, Massachusetts
So we're finally in Springfield, finally in Massachusetts, which has been one of our goals from the start. We've been looking at both Connecticut and Mass as a possible permanent place to settle, at least until we get past the transplant and all the post-transplant stuff. Norwalk was the only assignment we've had so far that any of us would call "bad." Christie's work schedule, and subsequent all other activities were not what we had hoped for. We did get to visit New York several times and see friends from all over because of our proximity, so that was good. But even the transition from there to here was difficult - problems with housing, lots of money, and several days in limbo met us at the end of the assignment in Norwalk. We were very ready to leave by the time we did.
We've only been in Springfield for two weeks, but we feel like we have our life back. Christie is working nights again, mostly in block shifts, which has restored much needed "together" time. Our apartment is wonderful, located in the downtown area of Springfield, which is also new for us. It's a secluded little cove in the middle of the district business. The buildings were originally part of the Milton-Bradley and Smith & Wesson factory and office complex, though the building we are in is a bit newer. We have already begun exploring all the "pick-your own" farms, local produce, library, and museums. More on that to come. While we are here, the boys will most likely be taking art classes, and possibly fencing or archery. We decided to take a break from team sports for a while because the soccer season in Norwalk was an absolute nightmare on every level. We all needed something different for a while.
Additionally, the library is just down the street, as is the Y, so I anticipate lots of time at both, and hopefully mingling with the local homeschool community to get a feel for the area. Christie is already making friends at work, has a lower patient load, and seems to enjoy it again. She isn't in cardiac, where she is most comfortable, but I think she's just glad to be away from the constant death and sadness of her last assignment. So all is good for now, looking forward to some family visitors in the next month, which will be nice since we haven't seen anyone since Christmas.
More later. For now, here's some video of our new place.
Subscribe to:
Posts (Atom)