Back to Normal

Well things are back to normal in the Brown house. And, as tends to happen when things are normal, another weekend has flown by without a whole lot of rest. But hey when the choices are laying around all day watching movies in a hospital room or staying busy doing holiday things, I'll take busy every time. If you're curious, neither make it particularly easy to get up on Monday morning...especially when it's freezing cold.

As you can guess from the photo, we've acquired and adorned the Brown Family Christmas Tree 2007. We found a new farm, closer to home, with a better selection. Saturday morning we all went down there and within minutes everyone had agreed on winner. As is typical, Gavin wanted to bring home some others that were either too wide or too small [he tends to lean toward the "Charlie Brown Christmas Tree" more so than the "Sean Brown Christmas Tree"]. It then took the remainder of the day Saturday to get the tree and the rest of the inside of the house decorated. We have decided that, as well as having an overcrowded garage, we have too much Christmas stuff.

That reminds me: I told Gavin he had to go through his toys so that we could pick out a bunch to give to the kids who weren't as fortunate as he is and don't have as many toys. He wasn't happy, but he'll go along with it. Anyway at one point during decorating he came out to the garage with me where I told him I was going to have to go through my mess out there and he says, "you mean you have to give it to people who don't have as much junk as you?" Sometimes I swear he is 14.

Then yesterday we did some grocery shopping and some baking (Pumpkin Bread: I'd share the recipe but it's not mine and there may be some copyright infringements). We also went to a birthday/holiday party with some friends, which was nice. The roads were pretty bad north of where we live, but as a result most people stayed off the road. Amazing thing is that the only people who went out, however, were the idiots. This, I've noticed, is no different than any normal day, except when the roads are bad there just aren't as many idiots.

Then I wound up the weekend watching the Giants stink up all of East Rutherford and its surrounding areas. If anyone hasn't been paying attention they're 9-5, third in the NFC, and could have clinched a playoff spot with a win last night. But they stink.

And I know, all you care about is how Molly is doing. Well she is great. She's got a bit of a cold and she has been sneezing and coughing a little more than normal, but her insides seem to be working the way they're supposed to (we go back for a follow-up with the GI this week) and she has been smiling and happy. More like Molly than she was the last few weeks.

Home Again

We left the hospital last night around 7 pm. Molly recovered fine from her procedure and tolerated her feeds all day.

We'll have the biopsy results some time next week, and have to schedule a follow up visit with the GI. Hopefully we can get this all figured out very soon.

For the time being, Molly is quite content. She is back to her happy, smiley self. And as of this morning when I left the house she was sound asleep in her crib. Gavin and Mom were also sound asleep in their beds. And Dublin was sound asleep on his. What I wouldn't have given to be doing the same.

Back at RWJ

On the one hand, it's easier to do this when I am posting regularly, so I just have to throw in an update. On the other, in that case I would have to find time to post regularly. Since I haven't had time to post with any consistency, I'll have to figure out a good place to start.

I mentioned Molly's Thanksgiving virus in my last post. She was miserable that day, and a few days before and after. On Thanksgiving evening, while I was holding her, I noticed a big lump in her belly. It was pretty large, and hard as a rock, and nurse Cara confirmed it could in no way be something that actually belonged there. We mentioned it to the pediatrician, but considering Molly's other symptoms, he didn't think it could be a bowel obstruction. He said if it was she wouldn't be able to go to the bathroom at all, and she would be throwing up a lot. Neither was the case, and in the days following she went back to her normal, happy self.

Then last week we realized that she a) still had the lump, b) was throwing up a little, and c) still hadn't really gone to the bathroom in a while. This coincided with Molly's fifteen month check-up. When she went in for that check-up her doctor agreed there was definitely something amiss and suggested we call Molly's GI. All day Thursday both Erin and Dr. Paul called the GI, without a response. A fellow at CHoP suggested it was simply constipation. After 24 hours of this, Erin decided to take Molly to the ER.

Oh but wait, let me back up. I totally forgot that while most of this was happening I was in Chicago.

So Tuesday night I went to the airport to fly to Chicago. Minutes before boarding, both my flight and the flight following were cancelled due to weather in Chicago. I booked a seat on the first flight Wednesday morning and went home. I was going out for a two day conference and if my morning flight was on time I would only miss about 90 minutes of the first day. Nothing is ever on time flying to O'Hare, so I figured maybe I'd miss three hours tops.

Wednesday morning we board and pull back from the gate on time. As soon as we've backed away the captain shuts down the engines and comes on to tell us that due to weather in Chicago we're going to have to hold for an hour.

40 minutes later we're taking off.

All goes well and we're still scheduled to arrive just a few minutes late. As we begin our descent into O'Hare, something happens I have never experienced before: the pilot aborts the landing and pulls back up into a holding pattern. He told us the runway was icing up and we needed to hold while they set up landing on an alternate runway. Hold time estimated to be 30-40 minutes.

After half an hour I notice we are no longer circling, but now climbing and heading straight in some direction I can't figure out. Captain comes on to tell us we had been put in another holding pattern, 30-40 more minutes, and we haven't got enough fuel for that so we're being diverted to Indianapolis.

We land in Indy, they refuel us right there on the tarmac, and then we're told there is a two hour wait before we can take off again.

15 minutes later we're taking off.

We arrive in Chicago about four hours late where it is now sunny. After a quick cab ride (during which it again began to dump snow) I arrive at the conference roughly five hours after it started.

Day two of the conference I am planning on making the most of it. My flight is scheduled to leave that evening around 9 pm. The facilitator is aware that people are trying to catch flights that night and intends to condense the second half of day two to ensure everyone gets where they're going on time. Unfortunately there is rumor of another dumping of snow that night and people are starting to work on even earlier flights. I am confident I'll be spending one more night in Chicago because of the snow. That's just how it goes with me and that city (some of you may recall in July I flew out to play golf and was supposed to go out and back the same day; I spent three days trying to get home because of thunderstorms and overbooked flights).

Then about three hours into the morning session of day two I get the call from Erin that she has just come from the pediatrician and she and Dr. Paul are unsuccessfully trying to reach the GI. She mentions taking Molly to the ER and/or her being admitted. I decide to get on an early flight home so I beat the snow for sure. I walk out of day two of the conference after a two-day total of six hours of a scheduled eighteen.

Now back to Friday morning and Molly in the ER at RWJ.

X-ray confirmed there was a giant mass in her stomach and the doctor was pretty sure she wasn't passing it on her own. They began some aggressive treatment to try to break up the mass, which continued all day. She finally was admitted and brought up to a room at around 9 pm. Their aggressive treatment continued through the night on Friday, all day Saturday, and all night Saturday night. By Sunday she had passed most of it, and was clearly feeling better.

With that being said, we were pretty sure she would be heading home yesterday. However, the doctor is still concerned there may be a more serious issue than just a build-up. They're concerned there may be some malfunction in her system that could cause this to be a recurring issue. So after talking with us, and then consulting with Molly's doctor's at CHoP, it was decided Molly would have a minor surgical procedure this morning to test for Hirschsprung disease.

If all goes well with Molly's recovery after the procedure she should be able to go home tonight. We're really hoping that is the case.

The only really good thing about this hospital stay is that RWJ is literally two blocks from my office. So I am heading over there now. I'll post another update later.

Thanksgiving Prep

That's sort of a misleading title. It may make one think I actually have to prepare in some way for this holiday. Like I am cleaning the house before all the guests arrive; or cooking the turkey. I am really not doing anything to prepare. Maybe I should have made the title simply: The Day Before Thanksgiving?

Things are busy as ever in the Brown house. Gavin is going to school; Erin is working from home and tutoring a couple nights a week; Molly is hanging out with Mom and visiting her regularly scheduled specialists; and I am just trying to keep up with all of them.

A couple weeks ago Molly had a nasty stomach virus, and the last couple nights she has been waking up with some new, unrelated stomach issues. But aside from that all is well. She was slightly miserable for the week or so she had the aforementioned virus [not that I blame her]. It's always so obvious to us when she is not feeling well because typically she really might be the happiest baby ever.

Most kids cry for a reason: hungry, diaper, tired, uncomfortable. Molly is no different, except she hardly cries for anything. She lets us know when any of the above scenarios needs to be addressed, but to actually cry - I mean to let out a whimper or a scream - something has to be really wrong. This explains why even I - the soundest of sleepers [I am not really sleeping through I am choosing to ignore most issues] - bolt out of bed when Molly awakes with a scream in the middle of the night.

So as I mentioned at the beginning of the post, we're gearing up for turkey day. The Wilberts clan came up from Houston and Cara is coming out from the city (even though she has to be back for work at 7pm). I am psyched for some relaxation time with the whole crew. Maybe this year I'll even try not to eat myself ill.

Then again maybe I will.

Hope you all have a nice Thanksgiving and take a few minutes to consider the things you have to be thankful for. I know I will. Not that I even need a holiday for that these days.

It's the Holiday Season; Unpaid Advertisement Follows

A couple quick administrative things:

1. If you haven't registered at www.trisomy18.org, or you registered but chose not to accept email from the organization, then you're not aware of the new collectible holiday ornaments. This ornament is the first in an annual series and it comes enclosed with a special awareness card. I think you'll agree these ornaments are attractive and reasonably priced, and would make a nice holiday gift.

1a. Also, if you haven't chosen to accept emails from the Foundation, you'll miss out on the highly anticipated debut of "From the Desk of the VP of Development" (a working title). Hopefully this catches on and serves as an effective means of communicating progress and goals with the members of the community, while simultaneously helping to coach and empower them to broaden the reach of the Foundation through fundraising and awareness efforts with their own networks - much in the way all of you helped us through the Triathletes for Trisomy 18 efforts last summer.

So, anyway, if you don't get emails from the Foundation make sure you have an active email address listed in your profile. If you're not sure one way or the other, shoot me an email letting me know you want to receive correspondence from the Foundation (using the email address you want the correspondence sent to) and I will make sure your status is updated appropriately.

[Also feel free to email ideas on what I should write about. For some reason I don't think I'll get away with mass communicating Giants updates to the community. FYI: if you didn't receive an email "From the Desk of the Executive Director" on Nov 20, you're not set up to receive email from the Foundation.]

2. The Foundation also has Keepsake bracelets like the one in the picture above. You can get one with or without a birthstone, and they also are reasonably priced, make nice gifts, and come with a special awareness card.

Both the ornaments and the bracelets require some lead time, so the holiday deadline is fast approaching.

Most importantly, proceeds from these items immediately benefit the Trisomy 18 Foundation and its mission of support, advocacy, and research. Items can be purchased by clicking here.

What a Difference a Year Makes

Ain't that the truth.

One year ago, at this exact point in time, Erin and I (and many of you) were waiting for Molly to come out of heart surgery. Perhaps you recall that a few days prior to the surgery we were weighing the pros and cons - first of whether or not to have surgery, and then of which of two procedures to choose from? Perhaps you even recall the day of the catheterization, when Molly's surgeon said he wanted us to make a decision that, "one year from now we'll all look back on and be happy with." Well, I haven't talked to him in several months, but I can tell you the Browns are pretty darn happy with the decision we made and I'd have to assume he'd agree.

As I say over and over, I don't post much when Molly is healthy. One could deduce from my blatant lack of attention to this space that Molly has been very healthy. This is, for the most part, quite accurate.

Molly has been feeling well for a while now. If you read the CaringBridge site, Erin gives you a bit more detail on the day-to-day activities.

I have to say though, it’s not all little rays of sunshine. Again, thinking back to the surgery a year ago, we knew the band on her heart would only temporarily fix the way her heart functions. The next step is to close the hole, which is quite large. Apparently the material they use as a patch is not typically used for a hole as large as that in Molly’s heart. And, there was also the secondary concern of a potentially smaller, muscular VSD being present. We’ll have to face all of these issues in the very near future.

Earlier this week Molly went to see the cardiologist and she gave her the go-ahead to have the tubes put in her ears. However, she also reminded us of all the information I outlined above. When Molly goes back in March for her evaluation, we’re going to need to start thinking about follow-up surgeries for her heart. For now, though, she continues to do quite well; she feels good; she looks good; she’s happy.

And yes, obviously, so are we.

And That is a Rutgers....First Down

Gavin loves football. This is a good thing because, as some of you may know, I do too. On the surface my new job appears to have nothing to do with football. But when you work for a public university amidst a surge in popularity resulting somewhat from the success of its football program, it takes on a more significant role in everyone's day-to-day activities. Particularly if your job function involves interacting with alumni as often as possible, and tens of thousands of them come to you for a home game.

I get to go to all the games. We have season tickets so I get to go anyway. But now it's actually part of my job. I took Gavin to the first game of the season and he had a blast. Ironically, his favorite part is the cannon. It gets fired after every RU score. For some reason he doesn't like it when the crowd cheers really loud, but he loves the cannon. His other favorite part is when there is an RU first down and the PA announcer shouts the title of this post. He gets pretty into it and says it along with the announcer. We also record the games on the TV at home. For the entire week all Gavin wants to watch on TV is the Rutgers game. He pretends to be Ray Rice and runs plays along with the team right in our living room. He also spends at least 30 minutes every evening playing football in the yard with whomever agrees to "be the yellow team". I can only hope this all works out well for us in the long run.

Separate from football the job also goes well. I am still getting my bearings and learning the ropes, but all in all I have avoided doing anything silly. The group I work with is only five people, so I am pretty comfortable with who they are and what they do And there are another handful of people whose names and functions I have figured out, but there is a long way to go. We have over 150 people in the three buildings on this campus and on two other campuses across the state. In some ways it's been easier for me to meet alumni than it has to meet my colleagues. But none of that was meant to sound negative so if it does chalk it up to bad writing.

I do miss some things about my old gig, but all in all I am thrilled with the decision to move. And I am looking forward to going back to some L'ville events as an alum, rather than an employee.

OBX

Our vacation to the Outer Banks was awesome.

Seriously, I am not sure there is any other way to describe it. Basically, it was precisely what the doctor ordered. The one down side, if there has to be one, is that The Boy almost needed that doctor. Gavin contracted some variety of stomach bug that effected him most severely at night, although it made him fairly irritable during the day as well. But it didn't have too negative an impact on things. Like I said, it was awesome.

My goal was to read, relax, and spend a lot of time in the sun. I was very fortunate to get to do all of those things.

Since I was technically between jobs I was actually able to leave my Blackberry in the bed side table for most of the week. Those of you who know me probably realize how difficult that was. That piece of equipment is practically attached to my hand under normal circumstances [since then the Blackberry has actually been retired as my new employers have forced me to adapt to a Treo; I miss my Blackberry].

I was also able to fly through the first three plus installments in the Harry Potter series. The first three went really fast: no more than a day and a half each. Then the fourth one (this is the one where they jump from 3-400 pages to 7-800 pages) became something of a road block [I have since finished the fourth and am now fighting through the fifth...there are seven. Don't even think about telling me how it ends].

The weather was incredible; the beach was 300 yards away; and the house had a pool. Every day was pretty similar in schedule: early morning run, beach, lunch, pool, beach, pool/happy hour, dinner, hot tub, sleep. If you think that sounds monotonous you're sorely mistaken. That schedule was precisely how I wanted the vacation to go down.

I came back relaxed, tan, and obsessed with a skinny, little wizard. I'm really hoping to pull off a similar vacation next summer.

Television Debut

Many of you probably remember the triathlon fundraiser for the T18 Foundation, and the article that appeared in our local paper the day before the race? Well one of the local news stations must have picked up the article and decided we might make an interesting story for their show.

On August 15 Erin, Molly, me, and Victoria Miller from the T18 Foundation, filmed an 11 minute segment for Perspectives: New Jersey, which aired on August 18 at 5:30 am. I understand it has replayed a few times since then, which is great because I'd bet Erin and I were two of only about a dozen people who caught the opening show [we actually prolonged the start of our vacation one hour to see it].

The host did a great job of asking the right questions. We talked mostly about Molly and the challenges she faces, as well as about the challenges facing all T18 diagnoses. The fundraiser was only the very last thing we discussed, which was nice because all the previous topics should be more useful to the general public. We're hoping we can get a video of the show to put on the T18 web site, and of course, on here as well.

I should not go without saying how impressed I was by my wife. She gets extremely anxious when she has to speak in public or do anything where she is the focus of attention. Well she totally nailed it. She was unbelieveable. On top of looking incredible on screen she managed to speak eloquently about the condition and our experiences. She was simultaneously honest and knowledgeable. And she totally stole the show.

Of course Molly did quite well herself.

You Mean He's Still Around?

Yes folks, I am still around. And I have to apologize for being such a slacker. I've actually had the nerve to fill my free time with things like -- well, actually, I don't really know.

So I promise to make this the first in a series of posts over the next several days relating to me, the new job, our family, television, vacation, politics, religion [hopefully some of you were paying attention? it can't possibly have been so long you'd forget the rules: no religion, no politics]. But I'll post on those other things soon.

First things first, Molly is doing great. She had a bit of a bug a couple weeks ago that lingered longer than we'd have liked, but she kicked it on her own (well with Erin taking super-good care of her, actually) and has now fully recovered. She's been quite happy since then. In fact, she might be the happiest baby on the planet. More on that later.

I know you guys have been checking in and I am sorry for the lapse. Thanks for staying on me to update. It's good motivation.

Big Weekend

Last weekend was a big one.

On Friday Molly turned one year old. I've heard from a lot of people that this year has just flown by. I get it, obviously, but at the same time I assure you it has not. I agree, of course, that it seems like August 10, 2006 just happened, but when taking into consideration all the things that have gone on in those last twelve months there has been nothing quick about it. This year has been terrific; and stressful; and promising; and exhausting. But it's been 365 days. And Molly continues to defy odds.

My mom and Greg came up to celebrate for the weekend. They arrived Friday morning for Molly's actual birthday. We had pizza night at our house with Erin's parents and all the excitement was just too much for the Bear because, as you'll see from the photo, she was asleep by the time the cake was cut.

Saturday was the joint birthday party. We had a beautiful day and a great showing of the extended family. Gavin's only complaint was that there were, "not too many kids as grownups," which seems to me to mean that next year we'll have to have a kid party [it was bound to happen eventually]. There were 6 kids there, but I guess he wants the kids to outnumber the grownups? My biggest complaint was that I didn't consider the size of the Blizzard cake and that there isn't a freezer I know of that could have accommodated its width. So we packed it in ice and cut it just before it turned into Blizzard soup. You know when you are a triathlete in training Blizzards are a staple of your diet.

Sunday we spent the afternoon celebrating Rob's birthday [which was the day before during our party that my wife intentionally scheduled on his birthday to get back at him for having our fantasy football draft on Gavin's birthday] at the Garland's. Another great time and another day of wonderful weather. I'd say with the exception of going two and out in horseshoes that day was just about perfect too.

So it was a great weekend all around.

Today we're scheduled for our first Brown family television appearance. I'll keep everyone posted on where and when you can view it. All I know is we have to go to the studio this afternoon, they're going to put makeup on me, and we'll have to answer some questions on camera. Aside from that, you'll all have to wait in suspense.

Team Molly Bear - NJ Tri

We're now about two and a half weeks beyond the big NJ State Triathlon. I should have posted sooner, I know, but for some odd reason things seem to be quite busy these days. I am not complaining...just making excuses.

So race day could not have been any better. The weather was terrific; the turnout was incredible; the race was well organized; and the Team members all did well (reports from Massachusetts indicate the weather and race were equally impressive up that way).

As many of you probably know by now, the Team raised over $21,000 for the Trisomy 18 Foundation. We can't thank you all enough for your support and generosity.

Pictures are up on the Shutterfly site so you can see what the set up looked like. We did our best to get some group photos but it was pretty chaotic; there were people everywhere!

We will be doing this again next year, so anyone who gave a second thought to joining the team has plenty of time to train. Sprint distance race is a 500 yard swim, 12 mile bike, and 3.1 mile run; and the course is great for a first timer.

Thank you again to everyone who contributed to the Team and/or the event in all the different ways you did.

Leaving Lawrenceville

So the mysterious phone call I keep referring to was a job offer. After careful consideration and an ongoing battle of pros and cons, I decided to accept it.

Just after Labor Day I'll be heading north a little bit to work as a Principal Gifts Officer at the Rutgers University Foundation. This is a great opportunity for me professionally, and it will be a great new challenge.

While I will miss Lawrenceville immensely, I am looking forward to the next chapter.

All the love and support we've received from our friends at Lville since Molly's diagnosis has been incredible. I hope everyone there knows how much it's meant to us, and how much we'll miss seeing them on a daily basis.

But I am an alumnus; it's not like I am going away.

I Prefer My Own Bed

So it's been a while since anything was posted and for a change it is not a reflection of what's been going on. Well it is, but not the way it normally is. Usually I say I haven't written anything because nothing has been happening. In this case it's because so much has been happening. Molly is still healthy, and thankfully none of what's been keeping us busy has been bad.

First we got to spend Fourth of July with the Browns from Hilton Head and some of Margot's family. They were up here in between a wedding in MD and another in upstate NY. It was nice to see them even though it was quite brief.

Then the following weekend we went to a wedding in which Erin was the matron of honor and Gavin was the ring bearer. We had a great time; really nice wedding and a lot of fun. Erin and I got a little mini-vacation out of it in that we brought Aunt Monica with us to watch the kids during all the wedding-related festivities. So we got to stay out late on Friday night and then enjoy the reception on Saturday night - solo.

Sunday we got home in the early afternoon and just hung out for a while. I had to get to bed early because I was catching a flight to Chicago really early Monday morning.

Boy do I wish I had slept through that alarm!

My plan was to fly to Chicago for the day to play in a golf outing. It would be my third year doing so. Great event; a lot of fun. Typically I fly out Monday morning and home Tuesday morning. But I saw no reason to spend the night if I could catch a late flight home Monday night.

The day started out beautiful. A little hot, but sunny and clear. After about five holes it got pretty dark. After seven holes it was downright scary and as the thuderstorms began they sounded the horn to clear the course. Within an hour it was decided the event would be cancelled. Within two hours I was on ym way to the airport to see if I could catch an earlier flight home.

Not only could I not catch an earlier flight, mine was cancelled.

So I called and got a hotel room and booked a flight for the following day at noon. The only real issue was since I was only going for the day I only had the clothes on my back. I had one change of clothes so I could wear something other than what I played golf in for the floght home, but that was it. The hotel gave me some toiletries. Annoying but not terrible.

Then on Tuesday the flight I was rescheduled for was delayed two hours. When we finally boarded and were about the push back from the gate, the captain came on to tell us about a ground stop in Newark and warn us we'd likely push back from the gate and sit on the tarmac for two hours before returning to the gate. I watch the news. I saw JetBlue leave people on the tarmac for 21 hours. He gave me the option to get off the plane and I took it. I figured I could get home faster on another airline.

I was wrong.

So another hotel room was reserved and another flight was booked. I still had no other clothes, and now my golf clubs and the few things I brought were headed back to NJ as well. I bought a Cubs tee shirt in the airport and waited for another airport shuttle.

Wednesday morning I headed back to O'Hare to see if I could get on an earlier flight. Since I couldn't I had to hang out at the airport until my flight departed just after noon. The highlight of the morning was a phone call I received, the topic of which will come up later. Flight took off pretty much on time. We landed in Newark around 2pm.

After quickly locating my golf bag I headed out for the short drive home. It felt great to finally be home. Of course, with Erin and Gavin flying to Houston that evening I wasn't going to be there long. Within the hour I was back out on the Turnpike heading to Newark.

We arrived in a torrential downpour and I got soaked running from the car to the terminal. After waiting in a few lines we finally got Erin and Gavin through security and not one minute later the monitor displayed their flight as "delayed". Since they were already through security Molly and I headed home. Then I got to sit in rush hour traffic on the Turnpike for a while, soaking wet, in the clothes I'd been wearing since Monday.

Of course since Erin and Gavin's flight didn't take off until after 10 pm, I shouldn't complain too much.

Then Friday morning I dropped Molly off with my mother-in-law and headed back to Newark yet again to catch a flight to Houston. We spent a nice weekend down there with our new nephew Ethan. He's a cute little fella, and he likes boats and doesn't seem to mind Tex-Mex. I think the highlight for Gavin was the NASA museum? You'd have to ask him though.

We returned home late Sunday night/early Monday morning in time to catch a few hours of sleep in my own bed before heading to work Monday morning. Of course, since I was basically MIA all the previous week I had plenty to do once I arrived.

Including ponder the content of the aforementioned phone call I received in O'Hare airport. More to come on that in the next post.

Semantics

Tomorrow. A week from tomorrow. Who is really keeping track? Besides, you guys are the ones who told me to post when the mood strikes.

So last week we took Molly to an ENT. The doctor was perfectly nice, but she didn't tell us much of anything. She said the tests Molly had for her hearing may not have been accurate (which we already knew) because the sensors may not have been able to measure things like fluid in the ear, or a narrow ear canal prohibiting the probes from getting down as far as they needed to. She said there are a whole series of tests we should do to gradually determine the extent, if any, of her hearing loss.

See there was no reason to rush for that post.

Since then things have been pretty normal.

This past weekend was nice: we went to the pool on Saturday and the beach on Sunday. The weather was awesome and we all had a good time. Molly and Gavin both seem to like the pool, but neither cares for the freezing, cold Atlantic.

Gavin and I went for a run on the boardwalk. He wanted to run with me, but I brought the jogger stroller just in case. He probably ran about 3/4 mile before asking to get in the stroller and rest. Then after a mile or so he decided to run again. That time he only last about 1/4 mile, but his form was much better. After that I pushed him in the stroller the rest of the way.

Speaking of the stroller, I am going to start running with Molly (or Gavin) as often as possible. I'd love to get to the point where I can do some races with Molly. Some of you may recall my desire to compete in triathlon intensified when we received Molly's diagnosis last March. Then this summer we decided to recruit athletes and supporters for Team Molly Bear to help raise money for the Trisomy 18 Foundation. So one could suggest that Molly has been the motivation behind my entry into the world of "recreational" triathlon.

Well if you're not familiar with Team Hoyt, take a look. I saw Dick and Rick Hoyt on Real Sports with Bryant Gumbel a couple weekends ago and was blubbering like an idiot by the end of the segment. Incredible. Not to sell our team short, but I have a long way to go before I can even ask for a spot on the Team Hoyt practice squad. Yet another "something to aspire to".

Finally, we're approaching the 2nd Annual Emma Marie McCabe Golf Classic. So far there are four foursomes playing in our group. If you're interested in coming out please let me know so I can send you the details. It'll be a great time.

A Better Showing

This past Saturday was race #2 of the season for your fearless triathlosopher. Sadly I have no existential analyses of previous cryptically referenced topics to share. This is good news, however, as it means I was concentrating on pedalling to the finish as quickly as possible rather than formulating prose. That's right this time I actually played the game. And the results were gratifying.

It also means that the philosophical nonsense I keep promising will have to wait another post or two. Basically, the internal battle is so bloody my faithful readers need to be protected from it. For those of you who can't wait, a less cryptic mention: I'm finding it difficult to understand how someone can be as superstitious as I AND believe in fate and karma at the same time; and I am finding it even more difficult to explain why it is that confuses me so much. If someone wants to write that post for me, you know where I am.

So since your humble scribe failed to deliver the goods once again I'll do my best to provide an adequate substitute. Since a lot of you have probably never been to a race, and some of you may be planning to participate in or be a spectator for one this summer (in support of Team Molly Bear), I offer you a day in the life of a recreational "triathlete" - June 23 to be exact (technically starting June 22):

Friday, June 22, 2007, 5:30 - check all bolts and moving parts on bike; take front wheel off and place in the back of the car; collect and lay out all necessities for race day (some people use a checklist; I am not one of those people).

6:15 pm - consume a healthy dinner consisting of grilled chicken and whole wheat penne pasta with tomato sauce.

7 pm - go over all necessities again before packing my bag. The list of things going in the bag looks something like this: wetsuit(s), goggles, race shirt, bike shoes, sunglasses, helmet, running shoes, visor, large black towel, small black towel, sunscreen, race belt (to hold race bib with number).

There are also nutritional essentials for the race: two bottles for bike (one with sports drink, one with water) and one orange flavored gel (basically food in a pouch).

And nutritional essentials for pre and post-race: two bottles of water, one Gatorade, PBJ, banana, cereal bar(s).

And some details the superstitious freak in me tends to: I lay out my clothes for the next morning (khaki cargo shorts [which are worn over], race shorts, flip flops, long-sleeve black shirt, Miller Lite hat). I also take off my chain and wedding ring; put the ring on the chain; and put the whole thing in a small pouch containing a rosary. That pouch then goes in the pocket of the khaki shorts along with my iPod.

8 pm - leave packed bag by front door; put all drinks and PBJ in fridge; put cereal bars and banana in cooler bag; gel in bag with race gear. Go downstairs to lie down in front of the television.

8:10 pm - fall asleep on the floor with Molly.

9:30 pm - Go upstairs to shower and get in bed.

Before this race I slept like a rock. For the previous race I slept probably three hours before waking up for an hour and then falling asleep for two more hours. Before my first race last summer I slept for three total hours (you may remember me telling you this, or perhaps you read it as a quote from my wife in the Trenton Times?).

5 am - wake up; brush teeth; get dressed; go down for breakfast (oatmeal); gather everything.

5:15 am - pulling out of the driveway doing one last mental check; driving to Pittsgrove, NJ.

6:30 am - arrive at Parvin State Park and find a parking spot; leave everything in the car and head to registration. They make me sign a waiver that I believe says something about being physically able to perform the tasks ahead and agreeing not to file suit if it turns out I overestimated my fitness level. A young lady asks me how old I am, hands me a blue swim cap, and tells me I am in the first wave. I throw up a little in my mouth.

6:45 am - return to car with goody bag of stuff I'll never use and a T-shirt I'll never wear; eat cereal bar; unload car (it's freezing outside, I am literally shivering. I decide to leave the sleeveless, short wetsuit in the car and go with the full suit).

6:50 am - set up transition area: basically this is a parking spot for your stuff. It's where you go between the swim and bike, and then again between the bike and run; you hang your bike up on the rack and then lay your stuff out next to it in some organized fashion. As you may imagine, I prefer mine very neatly organized with everything laid out in the order which it will be used: large black towel flat on the ground; bike shoes at the foot of the towel with helmet on top of them and sunglasses/gel in the helmet; shirt on top of helmet; just above that pile are my running shoes with visor on top of them; in front of that, at the top of the towel, my bag (filled with all the things I will have removed from my person) and my small black towel draped over it; I hang my belt with race bib from the seat of my bike.

7:01 am - call my wife and tell her I am there, all set up, and in the first wave. I inform her it is freezing and I am slightly terrified. Disconnect promising to call as soon as I am done.

7:04 am - go to the end of the line for the men's room.

7:10 am - get to the front of the line where I realize I have waited for six minutes to access one of three urinals that have gone seemingly unused for the entire time I stood in line.

7:15 am - race director makes his first announcement - and I am paraphrasing: a bridge on one of the roads on the bike course was washed out in a storm earlier this year. Bike course is now 15 miles instead of 12. Sorry.

7:17 am - go down to the water to check the temperature (warmer than the air) and see how the buoys are laid out for the swim route.

7:25 am - change iPod from Carrie Underwood to The Game (I know, my iPod is the only place those two will ever perform back-to-back) and begin stretching. I am fairly certain I am going to throw up.

7:40 am - return to transition area; turn iPod off; put everything into my bag; put cell phone into seat pouch on my bike (I like to put it in there in case I get bored on the bike ride...or in case I need to call for help for any reason); start getting into my wetsuit.

7:45 am - wetsuit is on just in time for pre-race meeting; one final check of transition area set-up; slap on my swim cap and grab goggles.

7:50 am - walk down to the water realizing I heard not one single word of the pre-race meeting; I'm positive I am going to throw up; and I could really use that urinal again (but it took me five minutes to get the wetsuit on and I am not about to mess with that).

7:57 am - in the water waiting for the countdown; I get myself just inside the far left start buoy so I start from the farthest point away from the buoy to which we're swimming, but I have a good angle to that buoy and a high likelihood of swimming out on my own since people tend to take the shortest distance.

8 am - gun goes off for wave one of four; 150 arms start swatting around in the water; I get out with relative ease and limited contact with other swimmers.

8:04 am - I am to the farthest buoy, making a turn around it; I look back and see a ton of people behind me. There is plenty of energy left in the tank; considerably less water has been ingested than previous open-water swims.

8:08 am - Out of the water; light-headed; short of breath. I am running up the beach and people are cheering; it's kind of like being in one of those flashback scenes from CSI (the real one, none of the Miami or NY garbage) when all the background images are blurry and the voices and sounds appear to be coming out of an old tape player that's really low on batteries).

8:08 and change - I am pulling my wetsuit off and drying my feet on the towel; I pull on my race belt; throw on my shirt; stick the gel in my shorts; put on my helmet and buckle the strap; put on sunglasses; step into shoes; grab my bike and jog out of transition (I make it sound fast, but from the time I stepped out of the water to the time I jogged out with my bike nearly three minutes elapsed).

8:11 am - jump on the bike; clip into pedals; start pedaling.

This is the worst part of the race, in my opinion: It's the longest segment and it's pretty lonely. It also happens to be pretty uncomfortable.

I try to get into a groove at 20 mph or so, and get comfy in the aero position. The course is flat and has long straightaways, so this is not so hard to do.

8:30 am - suck down the orange gel and wash it down with water.

8:50 am - after sipping from the bottle of sports drink I attempt to return it to the bottle cage attached to the vertical bar on the lower part of my bike frame; I miss the cage and the bottle falls. This happens to people all the time. You just leave it. They're like $4. However, this time the bottle didn't fall all the way to the ground. It actually got stuck between my left foot/pedal and the bike frame ao that I was unable to pedal. This at roughly 20 mph (though decreasing rapidly). My options are to slow down and eventually stop so I can extract the bottle, or, what I decided to do, continue at current rate of deceleration and carefully reach down for the bottle. After some forceful pulling the bottle came free and I was able to pedal again. A young lady flies by me and says, "great save, that could have been ugly." I thank her, try to increase my speed, and watch her butt get smaller and smaller in front of me. I finally caught her at the bike dismount eight minutes later.

8:59 am - rack my bike; take off helmet and replace with visor; take off bike shoes and replace with sneakers; run out of transition. Takes just over one minute. As I run out I look down at my watch to see that I am at exactly one hour and know that with a sub 25 minute run (which is always my goal) I can beat my target time of 1:25 (which was set thinking the bike course was only 12 miles). Incidentally I have run a sub 25 minute 5k in exactly zero competitive events. In fact, just six days prior I ran a 26:45.

9:08 am - I throw an empty water cup on a pile of empty water cups and realize I've just passed the one mile mark in under eight minutes. My calves are really sore. I have never experienced the feeling of cramping calves before.

9:13 am - we reach the turnaround; the volunteers standing there tell us we're all doing great and we're half way there. I note my pace has slowed.

9:18 am - I grab a cup of water and don't even try to drink it, I just throw it toward my mouth realizing I need to giddy up for 1:25.

9:21 am - realizing there is not a lot of time left I pick up the pace. It seems like a good idea at the time. I have no idea where the finish line is, but I know it has to be close because my target time is approaching.

9:24 am - cross the finish line; hit the button to stop my watch; look up at the clock. The clock and my watch are off about three seconds, so go with their official time at 1:24.25.

I give my timing chip back and run straight to the bathroom. Not surprisingly, I no longer feel the need to throw up.

9:26 am - call to tell my wife I finished; Gavin answers the phone and yells, "did you win, Daddy?" Smiling I make my way to the post-race food where, since I know I have a PBJ and a banana in my car, the only thing that appeals to me is a chocolate covered donut.

9:30 am - pack up transition area; share a couple well-wishes with a few guys in my area; head to the car.

9:40 am - back on the road heading toward home. I eat my PBJ and banana and start sipping on my Gatorade. I estimate arrival around 11:05 am.

11:05 am - bumper to bumper traffic on the NJ Turnpike northbound, 30 miles from my exit. Suddenly I'd like to throw up again.

So that's about what it looks like. And let me tell you: I am not even a serious triathlete. There are guys out there who are far more intense, and do this almost every weekend. But hey, look at all the stuff I got done before 10 in the morning. Not a lot of people can say that about their hobbies.

We're taking Molly to the doctor in the morning to talk about her hearing. She has been feeling great lately and has been happy Molly again. All is good. I'll post again tomorrow after we see the doctor, and I promise to actually talk about Molly this time.

Get a Grip

Molly is feeling much better these days. The super-powered antibiotics seemed to do the trick as she has been less junky for the past few days. She's been extremely happy and very talkative as well. She went in the pool today, where her brother intends to spend absolutely all of his time this summer.

This morning Molly visited the orthapedist, and he gave her a good report. He said her hips are starting to work into the sockets and that her hands are looking good. We're supposed to keep doing what we're doing relative to her hip brace and hand splints.

I know last post I promised some variety of philosophical mumbo jumbo, but I haven't had time to put it together so it's worth reading. This time crunch has also gotten me thinking about the amount of time that passes between posts.

There are times where I post something regularly, and then there are spells (like the last month or two) where a lot of time seems to pass between messages. I've seen other blogs where the author only posts one day per week; others where it's two days per week. On the one hand this would add pressure on me to actually get something done on a particular day, but on the other hand it would keep you all from having to check the page on a daily basis.

So this one is for you - you're the ones reading, after all.

Would you prefer I:

Continue to post randomly; when the mood strikes or there is some news?
Post one day each week?

Feel free to vote here, or via email. Or not at all.

Sick on Your Birthday

That's the worst. No one wants to be sick on their birthday!

Molly is ten months old today - 5/6 of a year - and she has stinking pneumonia

The pediatrician gave her super-powered antibiotics, and the cardiologist ok'd a decongestant, so we're hoping she kicks it quickly. I think you've all been around long enough to know what happens if she doesn't; and around long enough to know I won't say it out loud.

She is generally uncomfortable and has a lot of junk in her chest; we can hear it when she breathes. Pardon the graphic descriptor, but we're all friends here: since she can't cough the phlegm out like an adult, it gets stuck in there making it difficult to breathe. The only way to get it out is to spit it up after a feed, as she does every now and again (like just two minutes ago while I was typing this), which is disgusting to us but apparently a relief for her. She shows brief spurts of happy, smiling Molly - usually following one of these episodes (although that doesn't seem to be the case right now).

Her vitals have remained fairly stable. Since we now have a mini-medical facility set up in her nursery, we can monitor these things without going to the doctor (or that other place). So let's keep our fingers crossed.

In other news, the Triathletes for Trisomy 18 program continues to see steady contributions from far and wide. The current total is 93 donors and $17,675. Unbelievable. And if I haven't said it already, we can't thank you all enough.

Finally, your humble scribe is feeling philosophical again. I float this to you as a warning more than anything else: Either the next post will be really long and convoluted, or the next three to four will be inter-related. I've got some thoughts to put in order, but I've been asking myself some questions lately and what would be the point of this space if I didn't attempt to articulate them?

Guilty as Charged

Triathlon season officially kicked off today for two members of Team Molly Bear. As a tune up for our big Team outing in July, Rob and I headed up to the Poconos for the Black Bear Triathlon: an extended sprint race. For some background, a sprint is typically a 500 yard swim, 12 mile bike, 3.1 mile run. Today's event was a 750 yard swim, 18 mile bike, 3.3 mile run. We drove the bike course yesterday to get an idea of the terrain, and in the car it seemed hard. Let's just say the difficulty in the vehicle did not translate quite exactly to the difficulty on the bike.

I finished though. That's really what it's about; making sure I am in shape for July 22. But I certainly have a lot of work to do in the next two months. Rob fared much better: he finished fourth in his age group; inside of 50 for the whole event, I'd guess.

My initial hope was to finish. My secondary goal was sub two hours. 2:18.07.

I'm not sure I've been clear: The bike was hard.

Relative to the race, fairly specific to the bike, I am guilty of numerous things:

1. Looking past the next game
It happens in sports all the time: a team looks two games ahead to a rival or a tough team, and overlooks their next game. Then they get beat by that team. I was clearly looking ahead the NJ State race, and the Black Bear put a beating on me.

2. Biting off more than I can chew
This was a tough course in the early part of the season. I was not in shape for it. A lot of that has to do with #1, the rest with #3.

3. Doggin' it
I haven't been working hard enough in the gym; I haven't been on my bike enough; I've skipped workouts. All of this has to stop now. Nothing changes your outlook like a good beating.

4. Poor concentration
Most of this post was conceived during that treacherous bike ride. I probably should have been focused on the next climb, or navigating the winding turns. Instead I was writing this post in my head, and begging for it to be over.

Which leads to the biggest thing I am guilty of:

5. Giving up
Obviously I finished, so I couldn't have literally given up. But the thought crossed my mind more than once. I actually considered just flagging down an official and having them call for a ride home. I was positive there was no way I could finish the bike course -- especially knowing the run followed immediately behind. I'd love to say I fought through it; got back in the game. But I didn't really. I just went through the motions and tried to do as well as I could having already checked out.

But ultimately the thing that kept me from actually throwing in the towel was that it's just not my style. Can you imagine if this post started off with, "Well I couldn't finish the triathlon this weekend."? Yeah I'd be pretty disappointed too. And that's another reason I kept going: I didn't want all those previous posts talking about perspective and determination to be contradicted. Not to mention that I would have had to tell my wife and little boy I'd quit.

And finally, the big thing: Molly's little face. I mean seriously, what's a hilly bike ride on a cool Sunday morning in the Poconos in comparison to what Molly does every day?

The BBQ Package

How do you differentiate between a long weekend and a long weekend? I guess I could use text treatments? A long weekend would be the act of adding a day or two on the end of a weekend, and a long weekend would be a weekend that just seems longer than normal; the equivalent to a long commute. I guess it doesn't really matter, since this past weekend was both.

On top of the fact that my office closed in celebration of Memorial Day on Monday, I decided the take Thursday and Friday off as well. This extended weekend/mini-vacation was much-needed, and well used. However, we were pretty much non-stop the whole time. Basically we just packed too much into the five days, and forgot to leave any time to really take advantage of the time off.

Thursday we spent the day running traditional errands: groceries, lawn care, taking the car in for service, cleaning. Not that much fun. Totally necessary.

Friday and Saturday we had Trisomy 18 Foundation meetings at our house. We had guests from Canada and DC, and we got a lot of work done over one and one half days of pretty intense planning.

Saturday afternoon we had a BBQ; we'll come back to this.

Sunday we went to visit friends in their new house.

Monday we (actually it ended up being just me but don't get ahead of yourself) went to visit other friends for parade/BBQ.

Some other things were mixed in there as well.

For example, Friday Molly had to go to the GI doctor down in south Jersey. They changed one of her medications, and increased the dosage on the other; If that doesn't work we're supposed to try continuous feeds; If that doesn't work we're supposed to consider a j tube.

Molly was miserable for the trip home from the doctor and, in general, wasn't herself. She had a fever Friday night of around 102.

Saturday morning Erin took her to the doctor even though her fever had gone down. He said she might have a virus that's been going around and to come back Tuesday if her fever was still hanging around. She seemed to be feeling much better and gradually started working back to normal.

Saturday afternoon we had a BBQ; we'll come back to this.

Sunday Molly was pretty much her normal self again. Also, she started tolerating her feeds a bit better. The new medication hadn't been filled yet, so this was with just the alteration of the dosage of the other. In fact, I am pretty sure she only spit up once between Sunday afternoon and Tuesday afternoon. For reference, in a normal day she spits up four times minimum.

Monday Erin and Gavin woke up sick. They both had terrible coughs. They both stayed in the house all day, leaving me to play "single guy" at a family outing. I got a taste of what it's like to be the unmarried, non-parent in a house full of families. So I played the part: I drank a dozen beers, wiped sauce on my jeans, and gave the kids all the Skittles and Coca-Cola they could handle. Then I went home to my real life. Gavin actually stayed home from school on Tuesday, but both he and Erin seem better today.

Oh yeah, we had a BBQ on Saturday afternoon.

The BBQ Package

We were anticipating about 15 people; four of whom were children. I love a good cookout, and I know my way around a grill. But we figured since there were going to be several people we don't know that well, it would be better to spend more time mingling and less time cooking. The BBQ Package has it all, so why not.

Now if you haven't clicked the link to see what it consists of, please do. I mean they thought of everything. We didn't even have to buy napkins.

So I go out to pick it up at 4 pm (everyone has been there since 3) when it seems everyone will be good and hungry. We didn't put any appetizers out because it's all taken care of with this huge order.

I put the huge bags down on the floor and begin to unload the endless trays of food. To my surprise, the meat is all raw. Actually not all raw; the chicken and sausage is cooked and just needs heating. But the steak, burgers and dogs are all raw.

Are you serious?

Now please, people, give me your honest opinions: should I have known this would happen? I've told this story to several people and there have been plenty who think I should have expected raw meats. I am just wondering if there is a majority vote.

To me, you buy raw meat at the grocery store or the butcher. Restaurants sell it to you cooked.

No big deal, I lit the grill and got to work. But it wasn't part of the plan. I love the place the food came from and I am not about to boycott them or anything, but I just feel like something should be said. At the very least they need to make a change in their promotional poster to indicate the meat is raw.

Unless I am the only one who wouldn't know that already?!

When Did I Become a Grown-up?

I started a post on this topic in December and it never materialized. Mostly because I was still pondering the answer. I basically determined there was no answer. It just happens.

You wake up one day, and you're a grown-up.

Well I am reconsidering that position. In some cases, apparently, you can pinpoint the exact day you wake up a grown-up. Sunday, May 20, 2007 was that day for me.

The concept of adulthood is a bit confusing. Does it have to do with age? Status? Behavior? I am not sure. Society's perception of "adulthood" is a bit arbitrary, wouldn't you say?

You turn 18 and you're an adult.

Now you can vote; You can go to war; Be tried as an adult. You still can't drink; Your parents can kick you out of the house; You can't rent a car. When I turned 18 I was a senior in high school; I'd lived away from home for more than three years; I chose not to vote; I didn't have any money. I was not a grown-up. Hell I have friends who are on the back side of 30 that still aren't grown-ups. Not that there is anything wrong with that: I just said I wasn't one before yesterday.

You get married and you're an adult.

I just don't see the connection here. You're part of a two person team so therefore you've got the added responsibility of looking out for another person. But that should just be an inherent desire. If you're married to the right person you would feel that responsibility at any age. The problem is people don't take marriage seriously anymore [obviously I don't mean all people]. And their behavior often makes it clear that they're not quite grown-up yet.

You buy a house and you're an adult.

To get a mortgage you have to be a certain age and portray a certain level of maturity. Basically you have to have a job and a steady income. An 18 year old kid who waits tables, full-time, in a fancy restaurant, can pull in 40 grand and buy a townhouse. He can use the living room for a whiffle-ball field and the kitchen for a meth lab. He's got a blackjack table upstairs where his bed should go, but he passes out on the couch in the second bedroom most of the time anyway because that's where the plasma and the Xbox are. Point being: Not everyone is sewing window treatments and working on the landscaping so they can have the curb appeal.

You have a child and you're an adult.

The philosophical aspect of this statement is so jaded I will leave it completely alone. But even for me, having a child did not make me a grown-up. Sure I had to come home at night, and even if I was a little banged up I had to get up at 6 am. But by the time Gavin was born I was steadily employed, married, and a homeowner so I was already behaving similarly to an adult.

When Molly was born, it got pretty real. We were dealing with emotions we had never realized existed; making decisions no one should ever be faced with; aging well beyond chronology. Even still, #96 in my list of the 100 things I have learned this year, which was posted on just over one month ago, referenced a denial of my own adulthood.

So what could possibly have been such an epiphany, if none of the things above - and not even the combination of all things above - made me feel like a grown-up?

Saturday night when I went to bed I looked out the front window; there was a mysterious vehicle parked in our driveway. No big deal: I wasn't going anywhere. I figured it would be gone by morning. It wasn't. Then I remembered that the mystery vehicle in question had actually been put there by my wife. And we had paid for it before putting it there. And it will be in the driveway for the foreseeable future.

It's a minivan.

I'm a grown-up.

I Never Thought it Would Be Me.

It was bound to happen eventually, but, let's be honest, since I don't do much of anything related to care-giving, I never thought it would be my fault.

Last night, while changing Molly's diaper and getting her into her pajamas, I pulled out her button.

It's been in for a number of months, so the skin has healed around it, and it's supposedly removable. All in all it shouldn't have been too big a deal. But it was.

We were told the hole in her abdomen would heal like an ear piercing and we would be able to put the button back in like an earring after a few months. Well, since I was a big fan of the piercings back in the day, I have plenty of experience with putting earrings in. That is the worst possible analogy that could have been drawn.

In fact, it was more like stuffing a cucumber into the top of a Gatorade bottle. Sure, eventually you'll get it to go in, but not without some extra effort and a little mess.

She was not happy. She screamed right in my face while I was doing it. An hour later she was still mad at me. Two hours later she was asleep on my lap. She slept well and seemed comfortable. I hope we don't have to do that again any time soon. But at least we know we can do it.

Trinity won last night; I know you were all curious. Beat the number one seeded Cortland Red Dragons 2-1 in 13 innings. I listened to most of it; it sounded like an incredibly well-pitched game. The boys play Ithaca in the winners bracket final at noon today. Go Bants.

Which Weighs More?

A twelve pound baby? Or a twelve pound rock?

That's right, folks, the Bear is now up over twelve pounds. This takes her completely out of the newborn category. Meaning, I don't know anyone who weighed over twelve pounds when they were born.

Quickly: wishing the Bantams of Trinity College luck this afternoon in their second round game in the NCAA New York Regional. If you read this between 4:15 pm and 7:30 pm on Thursday, click here for live radio coverage. If you read this later, click here for NCAA Regional coverage. Some of you may not know I played ball for the Bants a million years ago...ok nine years ago. The Class of 1998, my class, was actually the first Trinity team to make the NCAA tourney; we went two and a BBQ. They've done better since then.

Back to Molly.

She had a great trip to the cardiologist earlier this week. As I mentioned before, she now weighs twelve pounds. The doctor also told Erin she didn't need to see Molly again for ten months. We both said the same thing: "When she is ten months?" But no, she actually meant in ten months. When we go back next March the cardiologist is going to consult the surgeons about another procedure to remove he PA band and go ahead and close the VSD. This was also the first time we learned the actual size of the opening - it has always simply been referred to as "a large opening." According to the doctor the hole is 12 mm, just over 1 cm. That's roughly the width of the tip of my pinkie finger. We didn't ask how that related to the size of her heart, but it seems "large" is an accurate descriptor.

Good news all around. Also sort of eye-opening. You all know my superstitious tendencies and I am certainly not going to take anything for granted. I've been skeptical to even make plans for Molly's birthday in August. But hey, it can't be all bad when there is something on Molly's calendar for March 2008.

$0.75

Nine months is three-quarters of a year. Seventy-five cents is three-quarters of a dollar. Get it?

Anyway Molly is nine months old today! Very, very exciting.

It's been a stretch of birthdays for us, and it's not over yet. Going back a week and a half we had UJ's birthday, Erin's mom last Friday, Erin last Saturday, Molly today, and on Sunday Dublin turns six (or 42 in dog years). And Gavin now seems to be at the age where his friends are having real birthday parties, so amidst these two weeks of family birthdays we're mixing in birthday parties for two friends.

And obviously I am not forgetting about Mother's Day. I even got my cards already. And considering last year I had to ask Erin to wait in the car while I ran into the mall - on Mother's Day - to buy her gift, I am way ahead of the curve.

Molly got some shots yesterday: two in each leg. It was her six month vaccine. I seem to remember she was scheduled for them around her six month birthday, but she was sick and had to postpone them. She took it like a pro and, according to Erin, only cried later. It was probably one of those things where the doctor pushed the needle, and then they looked at her in stunned silence waiting for a response. Then, when she noticed they were staring at her waiting for a response, she started to cry.

Doctor said her lungs sound clear. She weighs 11 lb 10 oz with her diaper on.

Starting Monday she will have two sessions a week with her OT.

Total Slacker

I am hard-pressed to think of a time since college where I have just completely abandoned a fundamental responsibility. It's totally irresponsible of me and I wish there was a better excuse. Hundreds of thousands of readers have likely found a new guilty pleasure for business hours. I'd imagine the US Weekly subscription rate has increased; fantasy baseball sites are seeing a record number of transactions; iTunes movie purchases have gone through the roof. And here I am thinking my lack of attention to this space only has an impact on me. Selfish, selfish man.

However I have said this before: when Molly is healthy I am less likely to post and more likely to enjoy her health. And I have been consumed by my full-time paid job, my full-time volunteer job, and my full-time training job.

Since we recently came clean to the fact that this is all about me, I may as well start there (if I haven't already).

The Triathletes for Trisomy 18 program is off to a roaring start. The early and generous participation has been as impressive as it has been humbling. The number of people who stepped up and contributed early has completely changed the perspective of the program. Our original goal was $10,000 and thanks to the 49 people who have given in the last two weeks we are merely $100 from that total. With this continued motivation from teammates and generosity from donors, I would not be surprised to see the total go up over $15,000. This would be a nice base for the Foundation, and a tremendous kick-start to a national program. Bottom line: thank you, thank you, thank you.

In preparation for the big race in July I have run in two 5k fun runs in the last two weekends.

The first was part of a larger celebration at Giants Stadium as we broke up the offseason with a Draft Day tailgate party. Even though the season is still months away we got together with some adult beverages and grilled meat products and spent the morning talking about who the Giants needed to draft to improve on last season's 8-8 record. Then we went inside the bubble and watched the draft on TV. Anyway before all that started I ran a 5k.

Then this past weekend, as part of a larger celebration at Lawrenceville, I ran in the Big Red Race. This race was the end to Alumni Weekend where 1200 of our closest friends come back to school for a weekend of parties and dinners and sporting events on campus. Since I work in the Alumni Office I get to partake in this splendid event. And by partake I mean work from 8 am until midnight Friday and Saturday. Nonetheless, it's a lot of fun.

The best part of the BRR is the kids race. Last year Gavin ran with the "Under 3" crew in the 25 yard sprint. He got a little nervous half way through when he couldn't see daddy at the finish line, and he ran back to Mom screaming his head off. This year he moved up to the 4-5 year old group at 50 yards, and ran it three times. Well only twice officially, but after he ran it with the girls the first time, he had to sprint back to the start line so he could run it with the boys. So three 50 yard legs, two races, no spills, no tears, one medal. Next year he is running the 5k with me.

Saturday was Erin's birthday, but since I was at work all day we didn't do anything special. In fact, we only saw each other for like eight minutes all day. Colleen and Steve were in town for their baby shower, which was Saturday afternoon, so she at least got to do something fun on her birthday.

Everyone will be glad to know that a couple Fridays ago Erin and I finally went to Changs. We had an excellent dinner. It was a little loud, and a little dark. I think that basically means we're getting a little old. But good times, nonetheless.

Now for Molly. As I said, all is well. She seems to be tolerating her feeds better lately. She has been sleeping well. Thanks to the exercises her mother and OT do with her, she is starting to grab hold of things, and balance herself when she is propped up in the boppy. So she isn't exactly sitting up, but let's see anyone argue with me. We were supposed to take her for a feeding clinic last week, but our cardiologist, who works out of the same office, called to tell us that would be a waste of time and money. We'd have had to pay a co-pay for each of the five specialists who participate, and they wouldn't likely have been able to help much anyway. She also had a hearing test a couple weeks ago that she failed. It's a pass/fail test, there are no varying degrees. We're scheduled for a more comprehensive test in a couple weeks where they will hopefully measure the degree at which she can or can't hear. We know she can hear. I don't care what the test says.

Ok so I feel a little better. There are new pictures on the Shutterfly site; I have updated on a couple weeks worth of happenings. Perhaps I can get myself back on schedule and keep this space more up to date. I monitor the traffic on the site, so I know people are checkin in daily. Thanks for bearing with me.

Triathletes for Trisomy 18

The T for T18 page is set up on the Foundation web site. You can get to it by following this link. I'm also going to add it to the permanent links section to the right. An email will be coming to many of you in the very near future. Thank you in advance for your consideration.

Late Week Ramblings

It's been a week since my last post. I apologize for that. However, I have said before that when all is well with Molly I tend to have less to say. And, thankfully, she has been doing quite well. Making her smile and laugh does not get old.

In my Drafts bin right now are several follow-up posts on my Hospital Rating System. I just haven't been motivated to complete them.

And it's also been a weird week for me emotionally. The tragedy on the Virginia Tech campus is still so fresh in my mind I find it difficult to feel sorry for myself. I don't remember what number it was, but somewhere in the top 50 of what I've learned from 100 posts is, "no matter how bad it is, someone has it worse" or something like that. Psychologically, I can't even compute/comprehend/grasp. I just don't get it.

Not to make more excuses, but I've also just been plain busy.

Most of you probably read Erin's recent CaringBridge update that explained what I've been up to on the volunteer front. I've recently joined the Board of Directors for the Trisomy 18 Foundation and I have been working closely with the Executive Director to create some strategies for increasing the cash flow of the organization to help further its mission. Much of the work is long-term, and most of it would not be interesting to my faithful readers. However, in the short term I will be collaborating with a team of triathletes to help pilot a program where we actively raise funds for the Foundation through sponsorship. I casually mentioned this effort in my previous post, and Erin described it a bit in hers. The email should be out shortly with full details and the variety of ways you can help. Donations to the Foundation are just one way.

For the record, I have no idea how I am going to complete this race. By this point last year I was well ahead of where I am today. And last year I was only running a sprint distance!

I know I have mentioned the Foundation before and there are plenty of links to its web site in this space, but, seriously, if you have never taken the time to read any information on T18 besides what I post here I would urge you to go ahead and do so. All the stories are so remarkably different, and all the people are so inspirational.

The Foundation web site recently launched a program called Legacy Pages. I'll actually be using this capability to enable online fundraising for the NJ State Triathlon, but most of the pages that are up now are parents telling the stories of their children. It's hard not to notice that the majority of the children have passed. This link will take you right to the pages, if you're interested.

My mom is in town for the weekend. It will be nice to spend some time with her. And the weather is supposed to be really nice. I'm looking forward to getting outside and running/riding my bike. No reason to prolong the weekend any longer.

Two Thirds Old

Earlier this week Molly Bear turned eight months old. Very exciting. She weighs just under eleven pounds after losing a fair amount of weight as a result of her recent hospital stay.

She's been having a great week: tons of smiling; a lot of movement; minimal spitting up; and all around comfortable.

It's been less great for Erin and me as we traded a stomach bug earlier in the week, and I now have some annoying cold thing. But it's not about us, it's about the Bear. And she is eight months old and happy about it.

Speaking of anniversaries, ours is Sunday. Seven years. Unbelievable. You'd think we'd finally be going to Chang's, but we're actually going to try some new place not far from here. We figure we've waited this long for Chang why not put it off a while longer. Plus my mom is coming to visit next weekend so we're hoping to take advantage of the extra hands in the house and sneak off for dinner one night. Two weekends in a row out to dinner. Alert the media.

Be on the lookout for an email from me in the next week or so. I am going to begin a fundraising effort for the Trisomy 18 Foundation that will hopefully help bring in much needed funds for the organization's mission, and keep me focused on training for the NJ State Triathlon in July. I hope we can count on all of you to help us out. More to come.

What Have I Learned in 100 Posts? (51-100)

So I banged out those first 50 pretty quickly. I thought it was going to be a little harder than it really was. So without further ado, the rest:

51. My short game suffers the most when I don't have time to practice.
52. Being angry is a waste of energy.
53. When it come to gyro: Greek Lady. If she isn't around: Efes.
54. It is possible to sleep on a stool if you're tired enough.
55. The Family Sleep Rooms at CHoP, while a nice gesture, are just barely big enough for a full-sized human male.
56. Theoretically one could watch The Office on a small screen in the corner of their monitor, while doing actual work on the remainder of it.
57. The last year has been brutal, and I can't even imagine how much worse it would have been without my in-laws.
58. What doesn't kill you does, in fact, make you stronger.
59. The Unsinkable Molly Brown was a reference to Margaret Brown, a wealthy American socialite and philanthropist, who survived the sinking of the Titanic.
60. Molly Brown was wealthy because her husband, James Joseph Brown, hit it big in the Colorado gold mines.
61. My grandfather's name was also James Joseph Brown.
62. We knew none of this before our daughter was born.
63. The Unsinkable Molly Brown is now a reference to my daughter.
64. If not for my buddy Rob, my dog would have to "hold it" for 15 hours more often.
65. Easter mass on the 18th green at Harbour Town tops any other.
66. A baptism, in the hospital, less than two hours after delivery, is an experience you'll remember forever.
67. Ditto having eighteen people in your hospital room at one time.
68. Karma wins.
69. It is possible to convince yourself that something you have said or done has created whatever challenge it is you're facing.
70. That's why karma wins.
71. Our pediatrician has an "I [Heart] Hot Moms" t-shirt too; I bought it for him.
72. It is possible to re-insert an ng tube almost anywhere; including a restaurant, a table in a break room, the back of a car, etc.
73. Regardless of how good you get at re-inserting them, the person to whom the tube is attached will always be better at extracting it.
74. I am incapable of being serious for too long.
75. Not saying anything negative is harder than you'd think.
76. It's possible to fall asleep in the Meadowlands while 80,000 people make a lot of noise.
77. They make Burberry shirts for babies.
78. You can't explain it, but moms just have a way of making things ok.
79. There are times when McDonald's is actually precisely what you need.
80. Molly doesn't like to have surgery, so she puts it off until she decides she is ready.
81. Hundreds of people will come out for a pasta dinner on a rainy, cold, Friday night, if they believe in the cause.
82. There is no way to sufficiently express your gratitude to people who would do something like that.
83. Have I mentioned anything about how much I love my wife?
84. Macy's in Herald Square may have the real Santa, but there are still seven fakes up there with him.
85. The Internet is taking over - otherwise I would never find out that Molly was coming home from people who read my wife's CaringBridge journal before me.
86. The terrific people from Peapod will do all your shopping for you and bring the groceries right into your kitchen.
87. There may not be anything worse than a person who thinks they know what they're talking about.
88. With very little difficulty, people I don't even know can find and read all this stuff.
89. I actually pretend they want to.
90. There are certain times during the day when it takes longer to go the last four miles to CHoP than the first 40.
91. Not only do the numbers on the monitor mean something, they're not all that hard to understand.
92. Every hospital has a play room, and you need a three year old to find it.
93. If the parking garage doesn't validate, it may be cheaper to take a car service.
94. It's possible for a baby to spit up after every single feeding, and not even seem to care.
95. If everything happens for a reason, I'd like to know what it is.
96. I refuse to admit I am old enough to have grown up problems, but that doesn't change the fact that I do.
97. There are some things you just don't talk about.
98. No matter what.
99. I'm a touch superstitious.
100. There are a lot of people out there looking out for us. So thank you.

Seriously though, there could be a hundred more things I've learned in the last year. And probably twice as many on a list of, "Things I Haven't Learned." There is no way I could acknowledge everyone who has had an impact on us in that span of time, nor could I appropriately thank you all for doing the things you all do to show you care. I just have to hope you know who you are, and what it means to us.

What Have I Learned in 100 Posts?

So the other day yielded post number one hundred in this space. You may recall I said there was something going on in my head that led to the seemingly meaningless BLOG entry? I've been reading back over old posts. In fact, over the last few days I think I have read every word in all 100+ posts. It seems there was a gradual progression where the dynamic shifted. I'm positive it wasn't intentional. I am not even certain it was conscious. But at some point in the last year, it happened.

As it turns out, this blog, although entitled Molly Elizabeth Brown, is actually about me.

It's a sham, I know. I apologize. All this time I have been lying to you. But let's face it, if this were called Sean's Blog I wouldn't even read it. My readership is at an all-time high, and I have recently gone international, but I'll understand if you just want to call it quits.

This started as a place to inform people about Molly's condition and what was going on. It was meant to be all about Molly. And now it has some of that and, additionally, some of my thoughts about life in general. But what is it really?

It's completely filtered. It's completely censored. It's me writing only the things I want to share. Occasionally I offer some quick glance into my most intimate thoughts, but they're only my most intimate shared thoughts. There is an entire segment of my brain that exists only in that very space - not in this space. I often find myself driving in the car; or sitting on the couch; or in my office, when I am faced with a thought. That thought is then twisted around in my head until it becomes something I am willing to discuss here. In its raw form I'm not certain it's suitable for public consumption.

But I will say this: in the few instances where I have let my guard down and more than alluded to - but actually expressed - real emotions, I have been impressed by the people who have picked up on it and called me on it (offline comments; emails; phone calls). In most cases they had advice to offer that was worth listening to. In some cases it was just nice to know people were paying attention.

I want this site to be more than just a place where I give a daily (or weekly) update on Molly and how she is feeling; I'd like this space to be useful; maybe help someone learn something.

That may be asking too much of myself, but for now, I'll start with what I've learned. One hundred things, in no particular order. And if this were a reading comprehension exercise, many of these probably would not be found in the existing text:

1. Trisomy 18 occurs in about 1:3000 live births and is usually fatal, with most of the babies dying before birth and those who do make it to birth typically living only a few days. However, a small number of babies (<10%) live at least one year.
2. Statistics, these in particular, can be frightening.
3. My daughter is tough as nails, and is determined to be part of the <10%; if she has anything to say about it she will be part of the smaller percentage that lives for many years.
4. Optimism is a powerful emotion.
5. Realism always trumps optimism.
6. You can think for your entire life that certain issues are black and white and as a result would never render making a decision difficult. But unless you've been forced to actually make that decision, don't be so sure.
7. Spending hours alone with your thoughts is healing.
8. Spending hours alone with your thoughts can make you crazy.
9. My son kicks more ass than Daniel LaRusso.
10. I feel badly for people who have no one looking out for them.
11. I question whether or not people who have no one looking out for them are looking in the right place.
12. Complete strangers can become close friends just by doing something to show they care.
13. People who genuinely care are never worried about saying the wrong thing.
14. People who don't actually care make it clear by saying nothing.
15. I don't dislike people as much as I thought I did.
16. Faith doesn't define you, it directs you.
17. Praying doesn't necessarily mean you go to church, kneel in the pew, and ask God for forgiveness. You can simply sit quietly and ask no one in particular if they can help get you through the next five minutes.
18. It's not going to get any easier. That's true for just about anything.
19. The fastest way to get completely out of shape is to stop exercising and eat take-out and/or hospital cafeteria food for one month.
20. It only takes twenty minutes to get from my office to RWJ in New Brunswick, when my wife calls to tell me she is in an ambulance with "lights and sirens."
21. Genetics counselors, so far, have not knocked my socks off.
22. Nurses, so far, have completely amazed me. In every hospital, on any floor, in any scenario, nurses rock.
23. Perspective is a funny thing.
24. One of these years I am just going to give up cheese for Lent.
25. My dog can "hold it" for fifteen hours, if necessary.
26. The flexibility I've been afforded by my employer has been invaluable.
27. The medical benefits made available by that same employer have enabled us to continue living in our house.
28. My grandfather said a lot of things that make more sense now.
29. Family is a relative term.
30. Our family - immediate, extended, or otherwise - keeps us from breaking down.
31. Nurse practitioners can prescribe medication. And on top of that they get to wear street clothes.
32. As bad as it gets, someone has it worse.
33. The spider dies at the end of Charlotte's Web.
34. There are times when I can write for hours without stopping.
35. There are times when I go days without thinking of something worth writing.
36. The phrase "worth writing" is completely subjective.
37. My wife is a saint. She is well over the three miracle requirement.
38. I really, really love the New York Giants.
39. I really, really don't the New York Times.
40. Molly knows exactly what I am saying to her, and her expressions are as good as a verbal response.
41. Tomorrow comes whether you're ready for it or not.
42. There are not enough hours in the day to do all the things you want to.
43. There are barely enough hours in the day to do all the things you need to.
44. There is no way to put more hours in the day, unless it's the one day at the end of Daylight Savings Time.
45. Occasionally people know what you're talking about when you say Trisomy 18 and when they do it will likely catch you off guard.
46. There is a web site where many of those people congregate and this web site has been an invaluable resource for us from day one.
47. The people who run the organization that makes that resource available to us, mostly do so for free and I was so impressed that I recently volunteered to join them.
48. I find it hard to believe my little boy doesn't know what's going on, which makes me even more proud of him.
49. I'd have to say the same about my little girl.
50. There is a point in time where people grow tired of reading things, even though you may not be tired of writing them. This is a good point at which to stop.

Fifty more to come. But not too soon.

Happy Easter

We had a nice relaxing weekend and managed to get some new pictures on the Shutterfly site. Gavin had a boatload of egg hunts and never seemed to get tired of them. I think he was sneaking candy the whole time, to be honest with you.

Molly's been doing really well the last few days: she is tolerating her feeds well and sleeping like a teenager. When she is awake - as she was all day yesterday - she is alert and happy.

When we got home last night we were all exhausted. Gavin managed to stay up talking to himself in his room until after 9 pm. Molly made it through most of the Sopranos. Mommy didn't even come close. It always amazes me that I can be physically tired from doing virtually nothing. The price you pay for the benefit of sitting around for a couple days, I guess.

Molly Likes Holidays

Molly has returned home after nearly two weeks in the PICU at RWJ. It seem she likes to make it home for any major holidays. But we're planning a small Easter gathering to minimize the exposure to people, hence germs, hence respiratory infections. We're not "those parents", by any means, nor do I feel we would need to explain that to anyone, but we're going to do our best to keep her out of the hospital for as long as possible.

She slept in her bed last night and was perfectly happy doing so. She spent a few hours in her bouncy seat before bed. Gavin is extremely excited his mom and little sister are home. Erin is relieved to be home. I am looking forward to resuming my training schedule (I have five triathlons scheduled this summer, the first of which is June 3, and I have been on my bike and in the pool just twice).

So all is well for now and I have only good to report. Lent is almost over and I am not sure how I fared overall in my sacrifice. I think I did pretty well, considering.

In the works: "What I've Learned in Posts 1-100". Hopefully that gets done this weekend. Thanks for checking in. It's nice to know you're all out there.

Journal Update Notification

Since I am apparently the last person to sign up for Erin's Journal Update Notification, I presume most of you have heard the good news about Molly's impending release from RWJ. You know my deal: a little superstitious; don't want to jinx it. But it seems likely tomorrow is the day. Report is that Molly had another great day today and she and Mommy enjoyed some cartoons, and a few cooking shows [not sure why Mom would be watching those since she doesn't cook anymore]. But, again, you all probably knew that already.

What a Difference a Day Makes - Post 100

Seriously, when I got to the hospital last night to visit Erin and Molly, it was like I was walking into a different room. Well, actually, a lot of that had to do with the redecoration the previous night's nurse had undertaken for some feng-shua or whatever that stuff is. But it was also like a different little girl was there.

Molly looked fantastic: Her color was much better; her breathing was easier; her numbers looked good; and most importantly she seemed happy and comfortable.

If you had asked me over the weekend when she would be coming home I would have told you there was no way to guess. If you asked me now I would tell you she is heading in the right direction. I won't jinx it, but she seems to be making good progress.

I'm sure the celebrity treatment she got from her nurse yesterday, and the short walk they took outside, helped the healing process. I'm glad I made the drive up there yesterday afternoon, even though it was only for a half hour. Seeing her that happy made my day.

Now for the part that excites me and no one else: This is the 100th post on the Molly Brown blog. When I think back to post number one, on March 10, 2006, this space has come a long way. And when I read back that far, I am reminded that we have too.

Karma - Brown XII: Hostility in the Hospital

"...and fighting out of the purple corner, with an unblemished record and all wins by knockout, Karma!"

I'll sugar coat it for the benefit of my loyal readers: this morning has been wretched. Molly stopped throwing up around 10:30 last night, and slept well after about 12:30. She woke up alert around 6:45. Since 8:30 she has been crying.

She just settled down a few minutes ago, but she is not sleeping so I expect an interruption to the silence. She seems fairly comfortable now, but the loose coughs upset her and then it takes her a while to settle in. Her fever is back. She is off food again after being on briefly this morning. Her heart rate is steady; she is on room air, with the cannula blowing one liter gently in her direction; pulse/ox hovering around 80 (as long as she is over 75 the doctors are satisfied).

The kicker is that I feel terrible. I know I said I would not respond to anything short of a "Code Orange", but, of course, that was not taking into consideration the fact that I could be the "Code Purple". They haven't called it yet, but the nurse is clearly keeping an eye on me. In our ongoing battle, Karma came out swinging this morning and has me light-headed and incredibly nauseated. If I could keep my mitts up long enough to be defensive I might stand a chance. But I am pretty much just hanging in there hoping for a bell. Otherwise the knockout punch is coming.

The good news is that the bed is hard as a rock and the shower is a few inches bigger than I am. So I have no chance of getting the things that typically make one feel better.

Freakin' Karma.