Sunday, October 26, 2008

New Jersey Lighthouse Challenge

Last weekeend, out family decided to take a weekend trip to participate in the New Jersey Lighthouse Challenge. The challenge is to visit 13 different locations in two days, collecting a button at each location and a special cars once you visited all 13. In order to save a bunch of driving on Saturday morning, we drove down Friday night and stayed in a hotel in Thorofare, NJ, about five minutes from the first lighthouse we planned to visit. I was afraid the weekend would feel too "rushed" as we hurried to visit all of the sites. But, it turned out that we were able to go at our own pace and still see all of the sites.

We woke up early Saturday morning, grabbed some breakfast at the hotel and were on the road right about 8am. The first lighthouse we visited was Tinicum Lighthouse, located on the Delaware River in Paulsboro, NJ, just across the river from the Philadelphia Airport. This lighthouse was located right smack in the middle of the local community recreation park. The stairs on this one were very open. Brian didn't like being able to see down that well, so I had to carry him back down the stairs.





Next step was Finn's Point Lighthouse, a little further down the river.



And then had our biggest drive between lighthouses - about an an half to East Point Lighthouse. The kids were getting a little antsy in the car for this trip. This lighthouse had a nice view out across Delaware Bay.







At this point, we were getting hungry, so we found McDonald's for lunch before heading on to the Cape May lighthouse. We had been here back in June as part of our summer vacation - in fact it is the place we learned of the challenge in the first place. Now that we were on the coast, we walked over to the beach for a few minutes to check out the sand and the ocean.





Next up was one of the two museums on the route - the Cape May County Historical Museum. Housed here was one of the lenses that used to reside in the Cape May Lighthouse. The bright light you see in the picture below was generated by just a 60 watt light bulb.

From there, we went on to Hereford Inlet Lighthouse in North Wildwood.






And then to the Absecon Lighthouse in Atlantic City. Brian and Jason had gotten pretty worn out from all the climbing we had done so far, so they fell asleep in the car on the way. We had to wait a bit for them to wake up before we went into this one. This lighthouse is the tallest in New Jersey and the third tallest in the country.




Since the next lighthouse was one of the ones hosting a night climb, we decided to break for dinner before going on. Unfortunately, it took us quite a long time to find a place to break for dinner. We finally settled on a Stewart's drive in which was fun, but by then it was starting to get a little cool. After dinner, we went on Tucker's Island Lighthouse. Because it was dark, we didn't get to see very much. However, the bottom of the lighthouse contained a hands-on museum which the kids enjoyed a lot. We stayed until they kicked us out at 8PM.




The next task was to find a hotel for the night. Not really being familiar with where we were, we decided to just head in the direction of the next lighthouse and see what we could find. Turned out finding a place to sleep was an additional challenge we hadn't planned on. Hotels were hard to find - at least along the route we were taking. We finally stumbled upon the Barnegat Inn. While I was checking in, someone called asking for a room - and was told that I had just taken the last one!
The next morning, I ran out to Dunkin Donuts to bring some breakfast back before we headed out for the day. We got out of the hotel about 8am again and found we had about a 1/2 hour drive to our first step of the day, which was Barnegat Light Historical Museum. This small museum housed another lighthouse lens.

Then, we were off to the Barnegat Lighthouse itself. Unfortunately, the winds had picked up quite a bit overnight, so they had closed the lighthouse, preventing anyone from climbing up.
Next stop was about an hour away - the Sea Girt Lighthouse in Sea Girt, NJ.




After our visit at the lighthouse and a short visit at the nearby beach, it was time to find something to eat. We found a nice local restaurant, got ourselves a table, and learned that even though it was about noontime, they were still serving breakfast. So, we all indulged in a second breakfast.
When we were done eating, we headed next to Twin Lights in Highlands, NJ. This was the consensus favorite lighthouse of the trip. This lighthouse was high up on the hillside and had two light towers instead of one. Of course, we had to climb both towers.

Last stop was Sandy Hook Lighthouse. Unlike most of the lighthouses, where you could climb up and down as you pleased, this lighthouse had guided tours - eight people at a time. So, there was a line to wait on to go up the lighthouse. Also, they had a height limit of 48 inches, so that meant that Brian and Jason would not be able to go up. So, Jeanne took Brian and Jason to a nearby beach while TJ and I waited the hour to go up the lighthouse. However, it turned out to be well worth the wait. By that time of the day, the sky was very clear, so we were able to get great views of JFK airport, Coney Island, the Verrazano Bridge and the Manhattan skyline.






From there it was on to dinner at the Marina Diner - where they served us a feast - and then about a two hour trip home. We were all plenty exhausted by the time we got home, but we all had a great time!

Wednesday, October 15, 2008

thank God I have "gold-plated" insurance

Quote from John McCain in tonite's debate: "Now, 95 percent of the people in America will receive more money under my plan because they will receive not only their present benefits, which may be taxed, which will be taxed, but then you add $5,000 onto it, except for those people who have the gold-plated Cadillac insurance policies that have to do with cosmetic surgery and transplants and all of those kinds of things"

Ok, so depending on your definition of cosmetic surgery, I can see where that might be considered a "luxury item" in a health insurance plan. But lumping in transplants with that? Huh?

It's OK, John - you didn't lose my vote. I wasn't going to vote for you anyway....

Walk Day pictures

There are now a bunch of pictures from the Hudson Valley walk posted off the Hudson Valley Walk Page. You can check them out here.

Tuesday, October 7, 2008

PKD Foundation Webinar next Tuesday

Join Us for a Free Webinar with PKD Expert Dr. Ronald Perrone!

Register Today!

What: Free "PKD Basics" webinar presented by Dr. Ronald Perrone of Tufts Medical Center in Boston

When: 8 p.m. (ET), Tuesday, October 14

Where: From the comfort of your home or office computer

Who: Anyone who has been recently diagnosed with PKD ... family members of those affected ... all those interested in learning more about what causes PKD, how it affects the body and what you can expect through the course of this disease

How: Click here to register! It's quick ... it's easy ... and it's free! Sign up now!

The webinar is the first of a series of free webinars and other educational services planned as part of the PKD Foundation's new patient education program.

Learn more and view a list of upcoming webinar topics.

Friday, September 26, 2008

I didn't marry a mutant

Because there has been no known family history of PKD in Jeanne's family, it's always been assumed that Jeanne has a mutated form of Polycystic Kidney Disease. Estimates vary, but generally it is believed that about 10% or so of people with ADPKD have obtained it through a spontaneous mutation, with the other 90% inheriting it from their parents. Personally, I've for some time suspected that the mutation rate was probably somewhat overestimated, because it is certainly possible to have a mild enough form of PKD that you never experience kidney failure, and perhaps never learn that you have PKD.

Earlier this week, Jeanne's brother Matthew had to go into the hospital for gall bladder surgery. Last night we got a call from his wife, Emily. Turns out while in there working on the gall bladder, the doctors noticed that he had cysts on his kidneys. While he hasn't been officially diagnosed with PKD just yet, it isn't to hard to connect the dots on this one.

So, it appears that perhaps Jeanne isn't a mutant after all.

Monday, September 22, 2008

PKD in the comics

Heidi passed this along in an email today. The online comic On a Claire Day has taken on the subject of PKD in some recent strips. Click on the following links to check them out:

http://www.comics.com/creators/claireday/archive/claireday-20080915.html

http://www.comics.com/creators/claireday/archive/claireday-20080916.html

http://www.comics.com/creators/claireday/archive/claireday-20080917.html

http://www.comics.com/creators/claireday/archive/claireday-20080918.html

http://www.comics.com/creators/claireday/archive/claireday-20080919.html

http://www.comics.com/creators/claireday/archive/claireday-20080920.html

http://www.comics.com/creators/claireday/archive/claireday-20080921.html

http://www.comics.com/creators/claireday/archive/claireday-20080922.html

Looks like today's strip was still on the topic, so it might be worth checking back on a daily basis to see how long the theme continues. Some of these really hit home for me, like the one where she is surprised to see how generously people are willing to donate, and also the one commenting on health insurance.

Saturday, September 20, 2008

Walk Day 2008

Today was the Hudson Valley Walk for PKD. It was a simply fantastic day. The weather was absolutely perfect and everything went off great. This year, Jeanne and I helped out with the pre-walk registration process - I was helping guide people in filling out their registration forms and Jeanne was passing out T-shirts.


TJ was very excited to learn that some ham radio operators were helping provide emergency communications for the event. He happened to have his radio in the van, so he went back and grabbed it and then ended up helping out by being one of the folks leading the walkers along the route. The rest of us, as usual, took up the rear and were the last people back.

We were very happy that Rick and Sheila decided to join us this year and glad to have my parents rejoin us as well. We tried to get a full team picture, but Eric ran away before the picture could get snapped. So, we'll have to settle for an "almost full team" picture. Here it is:





Based on our success in last year's fundraising efforts, TJ and I were honored with our own named sections of the walk:





TJ received a trophy again this year for once again being the 2nd place youth fundraiser.

This year, Shop-Rite sponsored a water-break along the way:



Also new this year was some added "security".



The stormtroopers provided free instant photos with them for everyone who wanted one.

In the ceremonies after the walk, Kirsten led a group of us volunteers in presenting a restaurant gift certificate to Heidi to thank her for her five years of running the walk. Heidi will be stepping down after this year as walk coordinator, although she continue to lead the Hudson Valley Chapter. She's hoping that by handing off the walk responsibilities, she can expand the range of events and activities that the chapter performs.



After helping clean up, we all headed back up to our house for a small barbecue. TJ and Sheila went off and played some tennis while the rest of us enjoyed the beautiful weather sitting around the backyard. Then, we all enjoyed some burgers, brats, hot dogs and salads for dinner. It was a really great day!

Sunday, September 14, 2008

Poughkeepsie Journal article on PKD

Today's Poughkeepsie Journal has an article from Laurie Hlavarty featuring our family and the upcoming walk. You can find it on page 3E in the healthy living section or you can check it out online.

Thanks, Laurie, for your help in spreading awareness!

Friday, September 12, 2008

all work and no play makes for a dull blog

Well, it's been over two weeks since my last post. What's been happening? Well, mostly a lot of work around the house and a lot of work at the job. I took a couple of extra days off to make it a five day labor day weekend... and proceeded to spend most of it laboring around the house.


I finished up Brian and Jason's new room to the point where that have now moved partially in. We still need to get a new carpet in there, so I haven't moved most of their stuff into the new room yet. But, we are letting them sleep together in the spare double bed we have in that room until such time as we get a chance to get another twin bed (we already have one in storage)


Dad came up and helped put in a new sliding glass door in our family room. Jason and Brian are so happy that they can open and close the door to get out of the house there now. The mostrosity of a door that was in there before won't be missed - and neither will the cold draft we felt all winter long.


And Mike and the guys from DBS have been making great progress finishing our basement. They are just about complete - just some final touches next week and they should be done.


Mostly I've been painting - painting Brian and Jason's new room, painting pantry doors, painting the trim around the new door in the family room, and of, course, painting the basement...






Of course, I did have some help...







Meantime, there are only eight days left until the walk. Team Teddy Bear has managed to raise over $3600. Great job, team! The Hudson Valley Walk for PKD as a whole is now over $38,000. It's not too late to make a donation, so please feel free to head on over and support the cause.

Wednesday, August 27, 2008

Team Teddy Bear, Chicago Style

I happy to announce the grand opening of the Midwest Chapter of Team Teddy Bear. My sister-in-law, Alexis, has decided to join our team's fundraising efforts this year by starting up a team in the Chicago Walk for PKD. Team Teddy Bear Chicago will be walking on Sunday, September 21st at Busse Woods Forest Preserve in Elk Grove Village. Alexis is hoping to round up a few friends to join her. Check out her walk page and help her reach her goal. Thanks for joining us, Alexis!

Sunday, August 24, 2008

a fun and productive weekend

It's getting towards the end of summer and I'm finding myself with quite a bit of vacation time remaining, so I decided to take Friday off and make it a three day weekend. The weekend got off to a bit of a disappointing start, though, as I received a phone message from Kenya at Clear Channel Hudson Valley that they made a last minute decision to not run our PSA for the walk because the actual location of the walk (Bedford Hills) is not within their listening area. I'm guessing this was a decision made not by Kenya, but rather by one of her superiors, as Kenya was well aware of the location of the event, even going so far as to plan which radio stations would best reach those who might be commuting into and out of Westchester County from up here in Dutchess County. I guess the fact that my goal in running the PSAs was to try to draw more people from Dutchess, Putnam and Orange Counties down to the walk wasn't of primary concern to whomever made the decision.

Friday afternoon, I took the boys to the Dutchess County Fair, leaving Jeanne home to rest and relax in a quiet house for a change. The boys all had a good time checking out the animals:



watching the street performers:



and going on the rides:







Saturday was painting day. I'm finally getting around to trying to finish up the painting in what will become Brian and Jason's new room. I think it was April or May when I first started in there, then my "tennis elbow" (which I think I got from power-sanding the glue off of the wall after removing the paneling) delayed me for a couple of months, and then the last month or so has been really busy. So, with a much-improved elbow and a relatively free weekend, I was determined to make some good progress on painting, and indeed I did - all of the priming is done and the blue top coat is well underway!

Saturday night, I took a break from painting and the family went over to Sky Acres Airport, where they recently have opened an ice cream parlor. In addition to enjoying the ice cream, and watching a few planes take off and land, Brian and Jason got to play in an actual working phone booth.




We stuck around long enough to enjoy a beautiful sunset:

Sunday, August 17, 2008

Renegades game fundraiser for PKD

The good news is that the weather was perfect for our Renegades baseball game today. The bad news is that the weather was perfect for our Renegades baseball game today.



About 40 of us braved the heat this afternoon to watch the Hudson Valley Renegades take on the Oneonta Tigers in what I hope will become known as the first of an annual fundraising and social event for the Hudson Valley Chapter of the PKD Foundation. According to the weatherman, the high was only about 85 degrees today, but sitting on the metal grandstands in the bright afternoon sun with only an occasional cloud floating by to provide some shade, it sure felt a lot hotter than that. Only about half of us managed to last the entire game, which the Renegades won by a score of 3-0. Here's some photos I took of the group, before we started wilting too badly:











Around the fifth inning, we had some added excitement, as my nephew Brandon was hit by a foul ball. An EMT took a quick look at him, but it proved to be nothing more than a bruise. After a few minutes, he went right back to enjoying himself. In the end, he ended up with a red welt on his leg and two baseballs - the one that hit him and another one signed by the entire Renegades team. As you can see, that put a smile back on his face!





In the end, I think a good time was had by the group, in spite of the heat. I enjoyed both the chance to spend some time with my family and the opportunity to meet some new people whose lives have been impacted by PKD. And to top it all off, thanks to everyone that showed up, we raised $400 for the Hudson Valley PKD Chapter!

Saturday, August 16, 2008

Baseball camp with the Renegades

For about seven years now, TJ has been attending the Renegades baseball camp for three half-days each summer. If you are one of those parents who thinks the only thing your son needs in order to make the major leagues is the right baseball clinic, then this probably isn't the camp for you. But, if you are one of those parents who believes in your kids having fun playing baseball, then this is the best camp going.

On the last day of camp, all of the kids get to take a shot with one at bat against the Renegades players. Each kid gets his name and picture on the scoreboard and gets to have Zolz officially announce their at-bat. Since the camp had a rainout on Thursday, today was the final day, which was nice because I didn't have to play hooky from work in order to watch the "game". Here's TJ:

video

Unfortunately for TJ, 13 is the oldest you can be to attend this camp. So, depending on when the camp is held next year, this may have been TJ's last Renegades baseball camp. Of course, Brian and Jason are looking forward to their chance, which I think will come next summer.

more press for our cause

Laurie Hlavarty, the Healthy Living/Families editor at the Poughkeepsie Journal contacted me via email yesterday evening stating that she plans to run some sort of article relating to PKD and our walk sometime in September. That's all I know at the moment, but I'm very excited. Earlier this week, the paper ran an article about a man from Red Hook who participated in a four-way kidney swap down at New York-Presbyterian Hospital.

Thursday, August 14, 2008

the results are back

...and the good news is that there are no visible signs of rejection of the kidney. There just appears to be some scarring, which is apparantly normal for a kidney 10 years post transplant.

Of course, there is still some work to do to get the creatinine levels and cyclosporine levels back where we'd like to see them. But, it appears that, at least for the moment, everything can be handled with biweekly lab work and adjustments to medication levels.

Thanks to all of you who have cared enough to express your concern to us.

Monday, August 11, 2008

fear of rejection

No, its not that I'm overly concerned with whether the readers of my blog will like my postings or not. Unfortunately, I'm concerned with something more serious: kidney rejection.

Jeanne's lab results haven't been behaving themselves lately. First, her creatinine clearance levels have been somewhat elevated over the past few months. That was of some concern, but then more recently, her cyclosporine levels have been too low as well. Her nephrologist tried to combat this by increasing her medications, but a few weeks later, the cyclosporine levels haven't gone back up at all. So, now her nephrologist is concerned that perhaps the kidney may be beginning to be rejected. So, this Wednesday, Jeanne is scheduled to have a biopsy done of her kidney (the new one, of course). They will take the tissue and examine it for "visible signs of rejection". If they find some, they she will probably need to be hospitalized for a few days so they can work on getting her straightened out with some IV medications.

Hopefully, one way or another, they can get everything sorted out for her soon.

Sunday, August 10, 2008

team week

Well, I was supposed to have a followup post at the beginning of the week about "Team Week" where I was hoping I would summarize what team week was all about and maybe spend some time sending out some followup emails trying to motivate some additional fundraising. Didn't happen.

Instead, it turned out to be a crazy week and things PKD-related took a back seat. Last weekend, we were up in Vermont for the Sayah family reunion. It was a quick trip this time - up Saturday morning, back Sunday night. I'll post more on this separately later, along with some pictures. We got back late Sunday night to find an answering machine full of messages, so we knew something was wrong. The bad news was that Jeanne's Mom had fallen down the stairs and was in the hospital with several broken bones. Then, Monday, more bad news, as one of Jeanne's cousins passed away from stomach cancer. And on top of all of that, I had an incredibly busy week at work. So, anything to do with fundraising or anything else related to the walk was way down the priority list the past week.

But, despite doing absolutely nothing during the week to deserve anything, our team was lucky enough to win the Thankful Thursday award of a PKD Foundation "bag of goodies". Our team was randomly drawn from all of the teams that had at least 10 registered team members. Other winners for the week were Three Peas in a Pod on Motivational Monday, the Dream Team on Two-for-Tuesday, and Hooked on Hope on Wild Wednesday.

So, today, I'm finally getting around to catching up on things related to the walk. We've received a few more donations over the past week and our total is now up to $2195. Thank you to all of you whom have supported us so far!

Wednesday, July 30, 2008

progress on walk planning

I've been spending a lot of time lately on walk-related activities. We had our August planning meeting last week and it sounds like everything appears to be coming together well.

The corporate sponsorship gathering phase is over now. I guess I had some amount of success helping Michele out here, although I was hoping for more. I was able to obtain one cash sponsorship and two in-kind gifts that we can use for raffle prizes. At least I didn't come up completely empty.

So, now my focus is on helping Diane with media and publicity. One aspect of this has been trying to contact local newspapers and generate some interest in writing articles related to the walk. So far, I haven't had too much success on this front. One obstacle I seem to be running into is that the papers I am trying to work with are local to me, but not particularly local to Bedford Hills where the walk actually takes place. But, we do draw people from these areas to the walk, and we do have people in these areas who are willing to share their stories with the media, so I haven't given up hope completely yet.

Another aspect of publicity that I am working on is contacting radio stations requesting them to air some public service announcements. Here, I seem to be making some progress. Clear Channel Hudson Valley is working with me to produce a 30-second PSA which they can air on their local stations and I've also provided them a 15-second spot produced by the Foundation. I'm going to try to contact another station or two as well.

Then, there are some of the easier aspects of publicity - adding the event to online community calendars, and distributing posters and brochures throughout the area. I've submitted to every online calendar I could find. And, I hope to get started on brochurse distribution over the next couple of days. Unfortunately, we are still waiting for posters to be delivered from the printer.

And, oh, yeah - the actual fundraising! Well, Team Teddy Bear has gotten itself off to a good start. With some offline checks that have yet to be posted to our total, we're already at $1880. Thanks to all of you who have contributed to date! Next week will be "Team Week" where the various teams who have registered will compete for chances to win some prizes. I'll post details on this later for those who might be interested.

And, finally, the Hudson Valley Renegades PKD fundraising event is now all sold out. If you are interested and missed out, please do send me your contact info anyway so I can make sure you are included next year. Since it has been so popular, I definitely intend to plan holding a similar event again in 2009 - except I'll start the planning process earlier so we can get more tickets before the game sells out.

Saturday, July 19, 2008

Party for TJ

I'm not sure where all the time went, but eight days from today, I'm going to be the parent of a teenager. I don't know exactly how it started, and I sure don't recall TJ asking me for my permission - but here he is turning into a young man right in front of my eyes.

Today we had the family over for TJs party. It was really hot so Jeanne suggested we get out the Slip 'N Slide which has been sitting in our garage still unpacked for a few years. The kids all had a great time.

video


TJ was the master of the belly slide!


video


The funniest moment of the day was when Brian and Jason were told that they had to go and change out of their wet bathing suits before they could sit on the couch. They left the room and came back like this:




It was truly hilarious that they decided to do this all on their own. But, I'm a little worried if they can plan something like this together at 4, what will they be scheming together when they're 14?????


For TJ, I think the highlight of the day was receiving his very own guitar!


Thursday, July 17, 2008

Happy bloggiversary

A year ago today, I made my first post to this blog. At the time, I really didn't know where I was headed with it. But, I've found I really enjoy blogging and the opportunity it provides to share experiences both with close friends and family and with people I have never met (and likely will never meet) face to face. Thanks to those of you who have encouraged me to continue by leaving a comment, sending an email or linking to my blog from your own web pages. And to those of you frequent visitors who have been lurking anonymously in the shadows, don't be afraid to check in and say "hi".

Wednesday, July 9, 2008

We could use more people like Melissa

In case you haven't done so yet, I highly recommend reading the newest addition to my blog roll, The Gift of Life. Melissa's blog is about her "journey into kidney donation" as she has altruistically agreed to donate one of her kidneys to a complete stranger (who happens to have Polycystic Kidney Disease) through http://www.matchingdonors.com. Her surgery is scheduled for next week. It's well worth your time to start from the beginning and read her whole story. It is very inspiring.

Saturday, July 5, 2008

An All-American Fourth of July

For Independence Day yesterday, our family celebrated by going to Washington's Headquarters in Newburgh where they were having a special event "Birthdays and Baseball". Now, combining George Washington and baseball on the Fourth of July - does it get any more American than that? The event was led by Mickey "the Lip" Tangel - a vintage baseball expert. Mickey held a show where he demonstrated the equipment used in the early days of baseball back in the 19th century and talked about the rules and how they have changed over the years. For example, it used to be that you were out if the fielder caught the ball on one bounce and there really were no official balls and strikes, although the umpire would issue "warnings" if the pitchers made bad pitches or the batter failed to swing at good pitches.


In addition to the show, Mickey organized a wiffle ball game where the kids played according to the baseball rules used in 1864. TJ, Jason and Brian all had a great time playing.


Here's Mickey setting the lineup for one of the teams:






Jason leads off and smacks the ball off of the tee.




Brian swings hard trying to bring a run home.





TJ makes a valiant effort to field the ball near third base.




This guy was the umpire for the game. I couldn't decide if he looked more like Willy Wonka or The Penguin from the old Batman shows.






We all had so much fun with all of the baseball stuff, that by the time we went in for a tour of Washington's Headquarters, we found we had missed the last tour of the day. We did spend a little time looking through the small musuem they had there and also checked out the Tower of Victory on the property.


Around 5, we headed out for some dinner, then came back to the grounds to watch the fireworks being launched out on the river.


All in all, a really fun day! Hope yours was as well!