Can you fall asleep with the hiccups?

Liam has finally fallen asleep for the night. It's 1:44am. He has decided that 2am suits him as a bedtime and we are powerless to stop it. Try as we may to keep him up through the day to tire him out, he simply refuses to settle into bed early. Tonight I hope he sleeps well. He should.

He had another seizure tonight. This one was a doozy. He settled quickly after his diastat but the dose doesn't guarantee sleep the way it used too. His post seizure hiccups kept him up for a while. But he's asleep now. Good thing too as we are due in the pediatricians office for a visit and another round of immunizations bright and early at 8:30am. I've got the portable ventilator all set up and ready for a quick exit in the morning. We're getting pretty good at the travel thing. Me? I'm going to need a nap tomorrow for sure. Luckily I have the day off from work, since today was originally scheduled for a trip to the eye doctor in Boston for a fairly complex procedure. With the night Liam had I'm glad we'll only have to drive a few minutes away.

Don't get me wrong the kid is doing fine. His numbers and lung sounds are great but the seizures take a lot out of him and he'll probably be a bit cranky in the morning. Liam, like his daddy, has never been a morning person. I better get myself to bed soon too.

We had a good weekend. Liam got to spend a lot of time with his Meme and Grampa (my parents) while Karin and I got some work done around the house. The second floor is shaping up nicely and I only wish I had this weekend off as well to really finish it up. My father and I also spent most of Sunday working on building a shelving system so that I can organize the rest of the junk we have accumulated over the years. Its surprising how many christmas decorations I already own given that this is the first year we've really decorated for christmas. We had some major stress that involved one of Liam's meds and the morons who run its only distribution pharmacy and he had a few strong seizures as we work on adjusting his dose of that med. Par for the course in Liam's world. He handles it all better than I do. We finished it all off by cheating on our diets and ordering chinese food and watching the end of the football game. (How does a team with a quarterback who is NOT ALLOWED TO THROW THE FOOTBALL end up in the AFC Championship game???) Although I had some plans with a friend that I wasn't able to make, it was still a very good weekend.

The slow rhythm of Liam's vent is starting to put me to sleep now so I will end here. Hope everyone had a nice Martin Luther King Day, and I hope that you give to the Red Cross as much as you can spare. The people of Haiti need it more than you do.

No Brainer

I was going to write a nice blog post tonight. I was going to tell you about our almost trip to Boston on Friday and again on Tuesday but it needed to be rescheduled for next month because someone at the Dr.'s office dropped the ball. I was going to tell you about more of our insurance woes and how a letter sent to our house in error could have caused far reaching confusion of Liam's care had we not waited to act until speaking with some of our experts (yes, we have our own experts). I was going to tell you how going to the gym 5 of the last 7 days has been going well and we both feel great. Liam is doing great even if the frequency and strength of his seizures has increased of late. I was going to tell you about all of these things. But, ...

HBO is showing Army of Darkness right now.


So you see I really don't have much choice in the matter. Maybe Liam will pick up his dad's excellent taste in movies. Night All.

Up, up and away, or actually Away and then "Up"

A banner day for Liam as it was his first venture out of the house that had nothing to do with medical issues or doctors. Tonight Liam went to his grandmother's house for dinner. He even ate there. It was a wonderful change of pace for the whole family to have all three of us leave the house together. We didn't stay long, only a few hours but it was completely worth it for Liam and my parents who couldn't contain their excitement. I was a bit frustrated in packing all of his equipment into the car and spending the half hour getting ready to go only 4 blocks away but I was quickly sure that it was absolutely necessary. We all had fun and got more practice being on the go. It truly was a very worthwhile adventure.

Speaking of adventure, we watched Pixar's Up when we got home.

Ummmmm.....

Un-Freakin-believable.

I cannot remember the last time I enjoyed a movie this much. Story, Visuals, Script, this movie was incredible. I am absolutely cheesy enough to tell you that I laughed and I cried at this movie. Not just the best animated movie I've seen in quite a while but the best movie I have seen in quite a while. I had read nothing but glowing reviews for this movie online when it was released and thought the hype might overshadow it but I could not have been more wrong. If for some reason you waited as long as I did to see this movie, go and get it now.

Karin and I joined a gym. We have both been trying to start living healthier and this will also give us a reason to get out of the house a bit more often. While I get to socialize when I'm at work Karin seldom spends time out with people other than Liam and his nurses. This will help there too. Needless to say after only two visits I'm pretty sore today and figure I will be for the next few weeks as I get used to so much activity. I'm pretty pumped about getting into better base ball shape for this year's Providence Grays season. I can't wait for Liam to watch his dad play.

Well, Liam is falling asleep and so am I, so I bid you all good night.

The coolest cupcake website I have ever seen.

Step one: Bake 100 cupcakes.

Step Two: Decorate them all as some of the coolest video games, board games, paper games, and party games.

Step Three: Post them on a website in a random list and have the game titles hidden so it can be played as a quiz.

The coolest cupcake website I have ever seen.

Here are two of my favorite Atari 2600 games in cupcake decorations. I'm not telling the names of these. Check out the page if you want to figure it out.

The essence of this blog project was always a lesson in self-discipline. To get me writing every day (or two, or three). It's been a while since I wrote any true blog posts. I have notes jotted down on some things I really want to talk about but those things take time and energy to write. And I'm tired. Waa, waa waa, I worked all day, I have a baby at home, I didn't get much sleep last night (last week, last month, last year) blah, blah, blah.

Excuses.

Anyway, I may not have the energy to write the longer pieces I want to write so I'll throw together a bunch of smaller bits and see what sticks.

I may not have written much lately but I have been reading a lot. I finished the graphic novel Signals to Noise by Neil Gaiman. It was interesting. Dave Mckeon's artwork in this is stunningly beautiful and darkly adds layers to Gaiman's writing. It won't top my lists of favorite graphic novels or anything but it was a good read and I'm glad The Wife added it to my library this christmas. I've been plugging through Unseen Academicals by Terry Pratchett. Its the latest in the discworld series and I think I may put it down until I read more of the earlier books in the series. Characters from earlier books have popped up without much of introduction and I want more of the back story before I get here. I'm sure I could read this without starting at the beginning of the series but I think I'd enjoy it more if I knew these characters better. I was very interested to see if Pratchett's writing had changed much since his diagnosis of Alzheimer's. None that I could see in the 150 pages I've gotten to in this. I also started reading Gaiman's Fragile Things which is a nice little collection of short stories and poems. I think I'm going to start reading more and more short story collections for awhile.


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Liam has been doing very, very well. He made it through the Holidays and his birthday without incident or illness and we are starting to get back into the routine of home nursing. Over the Christmas and New Years holidays we had very limited nursing help due to the calendar and some unfortunate family emergencies for our nurses. It was wonderful to spend so much time alone with Karin and Liam. The holidays are of course, a time for families, and having so much of it privately (especially since it was our first) was very special to us. Nursing care started getting back to normal last week and we are now able to get back into our routine of sorts. Routine can mean comfort.

Liam is of course growing like a weed and pushing through more and more teeth. His seizures have been controlled very well but he is getting a shot tomorrow that may give us a few more attacks in the coming days. We're ready. He'll be fine. Physical therapy, occupational therapy, speech and language pathology, and his vision specialist will all be starting to come to the house more often so Liam's schedule, which has been relaxed the past three weeks, will come back to a full sprint soon.


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This is one of my favorite songs of all time. Trying to find some footage of the Talking Heads performing it I found this. Not bad. Veder's range can't pull it off the way Byrne did though.


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A fantastic collection of photos of the urban decay of Detroit. Some of these seem pulled right from some post-apocalyptic movie. Sad.




Well, that's all I've got right now. Liam needs a new diaper and needs to be suctioned. Then, bed.

Not much to say today.

It was a very nice weekend. It was actually a pretty good monday for that matter. We didn't do much but relax at home and take care of some house hold things. I spent most of the time away from the computer. Tonight instead of turning on the computer I watched the new Star Trek movie. Loved it. Too tired to write about it. Liam watched it with me because he decided that he wanted to stay up until after 2am tonight. You can imagine my excitement. I just got him to sleep a few minutes ago. Unless I jinx it by typing this, I'm going to try and get some sleep for myself. I owe this place a post and so here it is. I'm going to bed.

In which I discuss the relevance of hockey

There have been two developments that have greatly altered my hockey watching in the last 10 years. In the last ten days really. . .

1. The acquisition of Hi Def Television.
2. The Bruins played a game at Fenway Park.

Due to these two events Liam and I spent the afternoon watching a sport where he knew about as much about the game and teams as I did. I haven't watched a hockey game since I was manager of an East Side Mario's restaurant in Ramsey New Jersey. The NJ Devils played into the early morning against the Colorado Avalanche in a triple or quadruple overtime Stanley Cup Finals Game. We kept the bar open late that night and even though we stopped serving booze when we were supposed to, I remember worrying that if the cops came in and found that many people in the place after the state 'Last Call' I'd lose my job.Well they didn't and I didn't. We had a large bell behind the bar and were ringing it like crazy when the devils finally scored. (truth be told I'm not sure who won but I'm almost positive we ended up leaving in a good mood.)

That was about ten years ago. Today I ran some errands in the morning and I was reminded that the Bruins were playing the Flyers outside at Fenway today. It was all everyone was talking about on sports talk radio. I've been told by friends at work that watching hockey on HD is much more fun since seeing the puck is easier. They were right. The first period and intermission were entertaining in the way that watching any novelty sporting event is for me. Sure I'll watch the lumberjack competition but I'm not going to follow the careers of the North American axe throwing champion. Montages of Fenway and all its historic moments scattered throughout the broadcast made me miss baseball more than enjoy hockey but midway through the game that started to change. It wasn't a particular play or moment but I found myself yelling at the TV. "Get it out of the zone!" "Pass it, PASS IT!" and "What the hell is icing?" echoed through the house as Liam tried to ignore his dad and nap. (He'll learn not to even try sleeping during sporting events. Wait til Red Sox season starts.)


With about 7 minutes left in the game the Bruins scored to bring the game to a 1-1 tie and I really got into it. My Mom, Dad and Sister were over to visit so they could keep the baby occupied while I laid on the floor in front of the TV and cheered for a local team I know nothing about. It was fun. Made all the more fun when the Bruins won in overtime. Watching Fenway celebrate is fun no matter the sport. We all took notice of the win and celebrated and I found myself extremely happy that I spent the time watching. I doubt I'll watch another Bruins game this season. Maybe, if they make it to the finals I will, but probably not. That doesn't mean I can't be a fan today.

When the Red Sox lost the '86 Series I cried my 9 year old eyes out. It was the beginning of a lifelong lesson my dad would try in vain to teach - "Its only a game". The lesson wouldn't take for another 24 years. Until last year I was a horrible person to watch sports with. My wife the Yankee fan would choose not to watch her beloved team because she didn't want to deal with my comments and yelling. I wear losses on my sleeve and can be very loud in my disappointment with both the athletes and the umpires or officials. It's not "just a game" to me.

Until last year. Liam changed all that. How could I really get upset over the bounce of a ball when Liam was going through so much? I learned what's really important in life. Family. And even though I may have made a smart comment here and there, I was able to sit calmly and let Karin watch the Yankees win the World Series. No longer would I shout and scream at an MLB conspiracy and pointless rants about payroll and fairness. Not this year. After all its "just a game" right?

But sports is more than a game. Always will be. In 2004 thoughts above Boston were not only happiness that people's favorite team had won, but that loved ones also got to witness it. "I'm just glad my Grandmother got to see them win" and other sentiments flooded the talk radio airwaves the next morning. That win brought families and loved ones together. When the Boston Celtics won their last championship all I could think of was a friend of mine who had been called away on military service and was unable to watch the championship run of his favorite team and how much it meant to him to miss that. Today I watched the Bruins beat the Flyers in a regular season game in Fenway surrounded by the people I love. It was supposed to be "just a game" but about halfway through, all sorts of family togetherness and fun broke out. Cheesy I know, it's like a hallmark movie around here lately. But what happened at Fenway today, that wasn't just a game to me.

What a way to start the new year.

Hope you all have a happy and safe 2010.Taken by his Mom of course.