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.

Late Night Molly Update

Molly had a pretty good day today. I got here at about 6 pm and got the full download from the day time nurse.

So far tonight she's had a rough time. Oddly, she's been throwing up a lot.

The doctors have decided to discontinue her feeds for now in hopes that she'll stop. Her cough is pretty loose, so it may be that that's upsetting her stomach. Her lungs sound really clear, however, so it seems the coughing is helping.

She's on the nasal cannula and her numbers are good. They're going to let her sleep with that cannula, as opposed to the CPAP, and see how things go.

Right now she is coolin' in her bouncy chair, which is in the crib, and watching her mobile that we brought from home. I am not sure why she won't go to sleep, but she won't. And if she keeps coughing and chucking, I won't either.

There were two separate "Code Purple" calls a little while ago. Both on this floor; on the other side. I came to find out that Purple is for something happening to someone who is not a patient. The two calls were unrelated to one another, and in very close proximity. Maybe they both had the fish for dinner? "Code Orange" is a bomb threat. So while I am concerned for the two Purples, and I hope they're ok, I won't be reacting to anything short of an Orange.

You Might Live in a Hospital If - You Have a Rating System

When you go to Vegas you want to stay on the Strip, and if possible in a five-star hotel. If you're trying to impress a girl, or a client, you take them to a five-star restaurant. Some people [not us] spend their honeymoon at a five-star resort. Titanic was rated by many, not me I refuse to see it, to be a five-star film. Seems to make sense that five stars is the most you can get, and to get five you have to be good.

So for the sake of competition, let's get some ratings out there. I'm going to tell you who has the best and worst of everything from pillows to paninis. We'll rate all kinds of things from the four hospitals we have visited since Molly was born in August. At the end we'll add up all the stars and see what we find. To make it easier on me I'm using a four-star system and ranking them against one another. Four is the best and one is the worst; anything in between is just in between.

Category: General

Parking - it's easy to find parking at all four places and there are an adequate number of spaces in all four places as well. I've never been unable to find a spot in any of them. Visitors, on the other hand, find it more difficult to park in some than others. RWJ validates for $2; CHoP $3, but their rates are far higher; Princeton ocassionally has no attendant so it's free; St. Peter's garage is the most accessible.

****SP - Close proximity to the hospital; validation; good rates for those who can't (or forget to) get validated.
***UMCP - Close to hospital; plenty of spaces; good rates; chance for free exit.
**RWJ - Pretty far from hospital; good validation; decent rates; limited spaces.
*CHoP - Really far from hospital; good validation; expensive rates; limited spaces; bizarre phenomenon where it might take 20 minutes to get through the line to exit the lot.

Security - The strange thing about all these hospitals is none of them are in particularly nice neighborhoods. Even UMCP, which is in the town of Princeton, is in the least attractive part of town. So security could be an issue. Some of these places have a human presence, others have electronic security, some have pretty much nothing.

****CHoP - They'd get more stars if I were giving out more than four. You can't get anywhere in the building without showing your bracelet. Someone checks you at every door and before entering any elevator.
***RWJ - There is a security person at the main entrance, but you don't have to check in with them or anything. They make their points in that every door is locked and has to be opened by someone looking at you on camera. You press the button; they ask you why you're there; they open the door; then they check you out.
**SP - They have someone at every door. I was actually detained at one point while they checked my ID and called up to the floor Molly was on. They lose points because this happened the night after someone entered the building and snuck into multiple patients' rooms to play with their feet. It was on the front page of the paper.
*UMCP - How can they be worse than SP you ask? Well they have no security at all. When Gavin was born my buddy, Tall, rolled in with a six of Miller Lite and a large Conte's and made it from the parking deck all the way to our room without anyone saying a word.

Physical Plant - These hospitals vary quite a bit in size. They also span the spectrum in age. They're all completely different from the next.

****CHoP - This place is gigantic. And it's modern. And it's fancy.
***RWJ - It looks pretty new from the outside. The Children's Hospital is brand new. There are some places that look pretty dingy inside, but for the most part it's nice.
**UMCP - It's small in comparison, and from the outside it just looks like a building. It's not terribly fancy, but it's not bad. The rating system is inflexible; it's third best.
*SP - If I could give it fewer stars I would.

There will be more categories. Scoring will be cumulative. So far it goes like this: CHoP (9), RWJ (8), SP (7), UMCP (6).

RWJ Stay Three; Day Three

Things change pretty quickly around here. I just sent an email to a friend a few minutes ago and stated that Molly's fever was down. Literally a few minutes ago I was saying this. Now it's back. At that point she was also asleep. Now she is not. She is quiet right now though. And a few minutes ago she wasn't. So when I say I am trying to keep everyone updated, you should know that by the time you read what I post it may no longer be accurate. I can't even promise it's accurate by the time I post what I type.

There is something just wrong about watching 24 on this little TV with the sound coming from this tiny speaker on a remote control with a wire attached to it. So I am not going to watch it. Please don't tell me anything about it. Seriously.

According to recent test results, Molly doesn't have RSV or the flu. That's all I really know. She is still on oxygen, but it's down to about 30% and her pulse/ox is still in the low 80s. I'd like to see it higher, on less oxygen. I'm not a doctor, I just play one in real life.

She is so tired that she doesn't even want to cry. I mean she wants you to know something is wrong, but she wants to do so while using the least energy necessary. The worst is when she sneezes or coughs though; you can tell how much it hurts. All kidding aside, she is way tougher than I am. You too.

So I am going to kick it with Molly tonight; get some work done real quick; catch up on my reading. I am also going to try to catch up on some emails. So if I don't send you one, and you think I should have, please feel free to remind me tomorrow.

The Tale of the Oatmeal Blueberry Pancakes

For those of you who are only checking in to see how Molly is doing I will spare you the suspense: I haven't talked to Erin yet so I have no update.

This is about breakfast.

I figured since the kid really wanted them I might as well make them. So after a Google search, and a few friendly recommendations from afar, I decided I would go ahead and make them from scratch; trying to keep it as healthy as possible. I will say they turned out nicely after I stole bits and pieces from various recipes. I wanted to take a picture, but I can't find the camera.

It took a little longer to make them since I had to do some research, but I thought making Gavin wait a little while would be a fair trade for him making me get up before 7 am. We decided to have a sleepover in mom and dad's room last night and despite being less than half the size of his mother (who has no concept of even distribution of mattress space) he actually takes up more room. At times last night he was actually perpendicular to me, at one point even seeming as if he was trying to push me off the bed with his legs.

So in the end the pancakes came out looking and tasting great. There is one minor adjustment I would make next time, but I am happy about it. Gavin sat down and started eating and couldn't stop telling me how good they were. He even said he'd be having another when he finished his first two. Then he lost some steam, and here's the kicker, he told me, "blueberry isn't really my favorite. I'd rather just have clear pancakes." He also suggested maybe using Craisins.

So I guess my next "from scratch" will be Gavin's Clear Pancakes, but for my first I give you "Solo Dad's Sorta Healthy Blueberry Oatmeal Pancakes":

To make oatmeal mix one cup water with 3/4 cup instant oats and microwave according to oatmeal package. In a small bowl beat one egg and milk like you're making a scrambled egg. In a medium bowl mix the following dry ingredients: 1/2 cup flour, tsp cinnanmin, tsp baking powder, 1/2 tsp salt. Mix egg mixture into dry mix until well blended, add oatmeal and stir completely. Then add a 1/2 cup frozen blueberries to mixture and fold in (that's the change. I used about a cup).

I used a griddle and heated to 350. They cooked for about 3 minutes on each side. Flip when the edges start to crust.

We topped with a tablespoon of low fat vanilla yogurt (rather than butter) and maple syrup.

I doubt this is at risk of becoming a regular thing, but maybe something easy like this will come in handy for some of you. Next time you want to impress your kids/wife/girlfriend/random girl who came home from the bar with you but you think you may want to see her again rather than let her sneak out of the house while you're in the shower, you can make pancakes. Although in order to do that you need to have some basic staples in your arsenal, and I feel like most of the people I am thinking would benefit from this need recipes using only ketchup, light beer, Chinese take-out condiment packages, and baking soda.