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!