Sunday, February 28, 2010

Vacation Day one.

Liam fell asleep about 6 hours ago and so I figure I better throw something up here quickly before he wants to get up at about 2am and play for the rest of the night.

I had a great first day of my vacation. The Wife and I took turns helping my parents get some things done without a car while theirs was in the shop, which gave each of us an opportunity to wake up playing with Liam. There's no better way to start the day than by playing with this wonderful son of mine. He's just about over the cold I gave him last week and so suctioning and ventilator maintenance has gotten a bit easier yesterday and today. He's also finally back to his playful self and spent most of the day wanting to play which is fantastic.

The afternoon was spent reading to Liam aside from the short while that I made it out to the gym. I haven't been since I got sick last week and so it was very important to me to get there today. More important though was the time spent in the living room reading and playing with the boy which is how I spent the majority of my day.

If he's awake and engaged in what daddy's talking about we read his books. Mo Willems, Chris Van Allsburg, Grover. But when it's time to calm Liam down or to help him sleep with the soothing melodious voice of his father I usually just read whatever I'm reading. I didn't want to read him Maus by Art Speigelman. We'll save the holocaust for a couple years at least and so I picked up the copy of Neil Gaiman's Stardust that I had on the kitchen table. It was prominently displayed by the check-out counter on a shelf marked Librarian's Picks on my last visit to the library. Liam likes Neil Gaiman. He's heard Coraline, The Graveyard Book and selected chapters from American Gods. Stardust reads like a fairy tale anyway, and though Karin took issue with me reading about a witch gruesomely field dressing a unicorn, the book wasn't all that inappropriate. A boy on a quest for a fallen star to bring back to his true love. How bad for him could that be?

Reading aloud has changed the way I read. It is a different type of reading and one that I feel I am getting very good at. Scanning ahead to the end of the sentence to ensure proper inflection and tone. It helps my comprehension, recall and understanding of how sentences are constructed and flow. I find myself lately reading aloud even when alone. You should try it.

A few night's ago I noticed that our overnight nurse carried in a copy of Huckleberry Finn. "Are you reading Huck Finn to Liam?" I asked with great excitement.

"umm well, ... I'm reading it, but...sometimes if he's almost asleep I'll , umm quietly..." It seemed to me that maybe she thought I didn't approve. That maybe she thought my excitement was because I was upset.

"Please do! I would love it if you read him that!" As one of my favorites I was a bit jealous that I hadn't yet thought of reading it to him. I may need to get out my tattered, worn copy of The Grapes of Wrath and make sure that Liam hears his Daddy's favorite American novel. The syndrome that Liam has been diagnosed with greatly effects his brain. Because of this, we are unsure of how much verbal communication Liam will ever understand. The excitement that Karin and I bring to a story that we love reading to him means so much more than what words we are reading. I love reading fantastic stories to Liam like Stardust and The Hobbit because I get to make up fun voices for characters like dwarves and witches and put on a little show. Reading The Grapes of Wrath with him will allow him to hear how much that story means to me. It will also allow me to dig a bit deeper into the writing than I ever have before as I read the book aloud for the first time. Not sure I'll get through it all though. Damn Steinbeck makes me cry even when I'm reading silently to myself.

After a wonderfully relaxing afternoon I dragged the grill out of the garage and cooked burgers in the cold for dinner. After stuffing ourselves Karin and I watched The Night Train win gold in the 4 man bobsled before I set up camp on the couch by Liam's crib for the night and Karin went up to bed. Not a bad way to start any weekend or vacation if you ask me.


They're starting to pile up again so here's a bunch of links of the crap i find on the internet.


Apparently the state of Utah has gone batshit crazy.


Sleeveface some very cool photos involving album covers.


These guys wore over 200 different T-shirts to make this very cool video. Check out the carnage of the T-Shirt War.


Karin told me to check out Jeff Bridges website

Speaking of celebrity websites and blogs; if you are not reading Roger Ebert's Journal you're doing it wrong. It's not just about movies.


Saturday, February 27, 2010

Don't bother me I'm on Vacation. A vacation from my problems.

I am on vacation. A vacation from the day job that could not come at a better time. I need this. Last year with the birth of Liam I had used up all of my vacation time and sick time in january. The remainder of the year I was unpaid whenever I had to take time from work for Liam's hospital stays. All told, that would amount to about 2 and a half more months of time off. And so I was very excited this January when my paid time off rolled into a new cycle and I had three glorious weeks of paid time off with which to play. It will be a long time before we are able to take a trip as a family and so I figured I would break up the year with time spent at home not worrying about having to leave every day. A week in March a week sometime midsummer and a week in October for my birthday. I'm excited to begin.

Monday, February 22, 2010

The Graveyard Post

After a busy morning of running errands and Liam's physical therapy and occupational therapy visits Karin and I decided that even though some steel gray clouds were rolling in that it was nice enough outside to take Liam for a walk. We haven't gone for a walk in so long. We bundled him up nice and tight, hooked up the portable ventilator to the stroller, made sure we had enough oxygen in the tank, grabbed the camera and headed out into mild temps for late February. It was wonderful. A few blocks behind our house is the Little Neck Cemetery, a very small but beautiful historic cemetery. Among its residents are a passenger from the Mayflower and the first Mayor of New York City. Sitting on the hilly shoreline of Bullock Cove the water views are gorgeous. Tucked behind our quiet neighborhood the little graveyard is protected from street noise and passers-by. You really need to know how to get there in order to find this spot. You're not going to just stumble upon it.

As a Boy Scout growing up my troop was responsible for an annual cleanup of Little Neck. We would setup grid patterns to search for litter and other debris as well as replacing all of the veterans' flags. In a solemn ceremony involving living veterans and the local American Legion chapter we would burn the old flags after placing new ones at each marker. Although it was usually a day of hard work that would start very early on a Saturday morning I always remember having fun doing it.

As I got older and spent less and less time being active with the Boy Scouts I would still spend a good deal of time in Little Neck. In high school this was one of our favorite hang outs. Before any of us had our licenses, walking around Riverside was a summer night staple. Its proximity to our homes and its seclusion made it a prime spot for 'hanging out'. Sometimes it was to play manhunt, and sometimes we'd bring our guitars and play, but more often than not it was a quiet place to sit under the night sky and talk about girls. I did alot of talking about girls in high school and sadly very little talking to girls. Sometimes the police would come to chase us out. This didn't bother us that much. We would run and hide and only once can I remember being caught and yelled at. They didn't understand us. Thinking that we were up to no good they had every right to kick us out but little did they know that we felt an odd sense of duty to the graveyard. Because of our background in Scouting my friends and I were very protective of 'The Cem' as we called it. We probably chased out more kids bringing in beers and spraypaint than the cops did those three summers. The vandals gave kids like us a bad name.

I haven't been back to The Cem since I was in high school until today. Aside from a couple of signs marking it as a historical site that weren't there before it hasn't changed a bit. A few of the older markers have a few more initials carved into them (bunch of savages in this town) but it is still quiet and peaceful and I was excited to show it off to Karin and Liam. I guess I still feel a strong connection to the 12 acres of hills and swamp as if it were my little secret garden to show off. I have a feeling that the route we walked today will become a routine of sorts through the spring and summer.

Sunday, February 21, 2010

Pictures, pictures, pictures.

Well I'm feeling much better but unfortunately despite my better efforts at staying as far away from him as I could Liam has caught my cold. Karin has caught it as well but there's little chance of a cold sending her to the hospital. We're pretty sure we've gotten through the worst of it with Liam and the congestion seems to have stayed in his head and not made it down to his lungs thank God. He is cranky and irritable and doesn't show much interest in being near anyone. Just like his daddy behaves when he's sick.

There really isn't much more to report right now since this cold has in turns kept us all home and in bed. Here's some photos from the past few weeks time. There not necessarily new pictures but I haven't posted many pictures lately and so I'm making up for that here. Its 3am right now and I'll just throw those up before heading to bed.

Bath Time Fun!

Liam finally was able to meet some of his Great Great Aunts (my Nan's sisters) who have wanted to meet him for so long but just weren't able due to sicknesses or other complications.

My Nan is the one facing the camera. Of course in true Liam fashion he slept through the whole thing.
But even in sleep Liam likes holding hands as you can see above.

Karin has vowed to never cut Liam's hair and I don't blame her. How could we cut off that beautiful curl he gets going on top of his head?

I've mentioned in the past that it annoys Karin when I take pictures of food so in true husband fashion these next few are for her. I made a kick-ass stir-fry last week and couldn't help but take a few pictures of all the colors just for her. If you are interested in seeing a very cool food blog that includes amazing photos of food check out David Lebovitz's blog. He's a cookbook writer who tells of his adventures since moving to Paris and his food photos in every post are fantastic.

Thursday, February 18, 2010

March for Babies

I'm still sick and so this will not be a proper blog post.

But I am not too sick to let you know that you should click on the widget to the right and help support the March of Dimes. More specifically you should click on the Widget and help support Team Liam in this year's March for Babies walk.

I'll put up a proper March of Dimes post soon and tell you exactly why you should support this wonderful organizations.

But for now, sleep.



that's about how I have been feeling all week. crappy. Sick all week and trying as hard as I can to stay away from Liam. I haven't held him in 4 days and I'm about to lose my squash over it. Better safe than sorry. I'd rather check in on him from across the room than visit him in the hospital.

Anyway, still not feeling that well and so instead of blogging it is off to bed for me. I will fall asleep watching Olympic coverage which pretty much sums up my last 4 days, in and out of sleep while watching Olympic coverage.

Saturday, February 13, 2010

We are the children

While kick starting our Olympic fever with the opening ceremonies Karin and I watched the new We Are the World video. Lionel Ritchie and Quincy Jones put together a new group to remake the iconic single again and this time to support relief efforts in Haiti. First off let me say that I am 100% behind the idea itself and I hope the project sells like crazy and raises all sorts of money. It should be very popular and I'm glad that Jones and Ritchie deemed the tragedy worthy of such a big undertaking.

Now, about the song; yeesh, there's a whole lot of autotuning going on there. I don't know who the little kid starting the song off is but if he can't hit the notes then make him sing another part of the song. Computers helped the voices of quite a few of those singers and I'm all for technology giving us new tools to make things better but if you can't sing, you shouldn't sing. Not professionally at least. I have a problem with a group like this recording one song to begin with. No dynamic build up to a grand finale. Every singer wants to give it their all and really belt out their particular line which leaves the whole of its parts feeling over-sung. In this age of rampant over-singing (I'm looking squarely at you Celine Dion and blaming its popularity all on you) I could hardly sit through the whole song.

While I'm sure that there were some actual emotions being used by some of these artists I felt that it looked too much like an image and PR get. In the internet and 24 hour news cycle society every move a celebrity makes seems to be in furtherance of some sort of marketing and this seemed less sincere than the original release. Perhaps I'm just way too cynical about the cult of personality in this country. Vince Vaughan? Vince Vaughan, Really? I know the original had the likes of Dan Akroyd but at least Dan had been in the Blues Brothers.

Like I said, I hope it is a very successful project and raises enormous amounts of money to help the people of Haiti. I just don't think its a very good song or an interesting performance, no matter how many stars you pack into the studio; or perhaps because of how many stars were packed into the studio.

Friday, February 12, 2010


I've added a bunch of links to the sidebar including my Posterous Page and a link to a gallery of all the pictures I've ever posted to this blog. After taking a few weeks off, its time to get back to regular posting and linking. I'm now motivated by a sudden and unexpected jump in the number of followers to this site's RSS feed. Wherever you all came from, welcome. I hope you find things here mildly entertaining and feel free to let me know what you think by leaving comments.


I've enabled Google Buzz through my gmail and am not sure what to do with it. I guess now I'm a bit more connected to the 5 people in my address book who also use gmail. Strange. I don't have a Facebook. I had a Myspace for a few weeks that never got looked at and I haven't logged onto twitter in a month and a half. I guess I just needed more social networking gear to ignore. I did get Buzzed an awesome photo essay about butchering a pig from my brother the other day though. (photos not safe for vegetarians or weak stomached meat eaters like my wife. ) I love the Internet sometimes. I don't really get the whole Buzz thing yet and I might not ever, but for now its another distraction from more productive uses of my computer, and I'm always on the lookout for that.


9 Awesome posters by Ross Berens. One for each of the planets. (Hat tip to for the link yet again.) I linked Jupiter but make sure you check out Pluto. I wish I had a room where I could hang all nine.

An amazing collection of black and white nature photography by a fella named Nick Brandt. I was going to post one of the lion shots since the lion has become a symbol of sorts for Liam, but this shot (and all the elephant shots.) just blew me away.


While I'm in my paragraph then pics rhythm, I might as well show you today's daddy picture. Karin sends a picture of Liam from her phone to my computer at work every day to say hi. It helps get me through every day of being away from them and is anticipated by a few of my co-workers each day as well. "Where's today's picture?" they ask each afternoon. It is growing to be a fantastic collection and since they are from her blackberry they are a nice manageable size for sending around quickly. I have been slacking on the photo thing lately as I would rather hold Liam in my hands than a camera but I have the next 4 days off of work and will have more time with him to indulge in some picture taking. Anyway, here is today's picture. Liam is ready for his close-up and his mom is doing very well at giving me a creative new angle in every shot.

We here at Pressure Support have voiced our own support for one miss Regina Spektor(third to last paragraph) in this space before. Her newest album has meant so much to both Karin and myself as we made our way through a difficult summer. It will always be connected in my mind to Liam and his trach simply because it was what we listened to during the weeks and months before and after his surgeries. I have posted video of Regina performing a song that is clearly about a hospital stay with a chorus that brings such hope to issues that Liam was going through at the time.

Hold on, one more time with feeling,
Try it again, Breathing's just a rhythm
Say it in your mind until you know that the words are right
This is why we fight.

And so connected are we to another of her songs performed this week on the Jimmy Fallon show. We all watched the performance tonight off of the DVR and the moment and meaning were not lost as we all sang along with the chorus. . .

Hooked into a machine, hooked into a machine,
Hooked into a machine,
I'm hooked into, hooked into...

All the while with Liam being . . . hooked ... into ... a machine.


Wednesday, February 10, 2010

Buckle up folks. Its a long rambling update.

The day job (boo.) and hanging out with Liam (yay!) and going to gym more often (half-yay. I love having gone but hate having to go.) have made me too tired to blog of late. Its time to do a proper update of things here in Prince Liam's castle.

Liam has been doing very well since returning from our latest little visit to the hospital. He quickly returned to normal once home and though it took a few nerve wracking days for him to poop he has been excelling in that category lately. It's reassuring since we were so scared of scar tissue forming from an early bowel surgery and this helps us believe that it was a virus of some sort.

His seizures have been very well managed. We've been down to one every other day or so. Of course he just had one while I began typing this paragraph. He knows what I'm typing I guess. Anyway, the duration and intensity have been much less severe lately too. He gets his monthly RSV shot in the next few days though and since that can effect the effectiveness of his seizure meds we will have a few weeks of more seizures again. Its the cycle we live.

Breathing, for so long our most intense issue, has been very stable. [Every single one of you must now knock on wood for having read that! I probably shouldn't have written it.] We'll need to schedule a "tune-up" visit to the hospital so that we can do a vent assessment and a bronch to check out how his airway is growing, It's probably about time to get Liam a bigger trach now too. So next month its back to the hospital for a few days. This time it will be much easier. Its the emergency hospital stays that get to you.

Liam's strength and head control have been improving steadily. His work with physical therapy and daily exercises with Mom have Liam progressing nicely. At playtime he is more engaged with the toys and whoever he's playing with. All great steps and we are extremely proud of our little man.

I guess that's the rundown on all things Liam but it all sounds a bit too sterile. He is not a patient but a little boy and he is doing just fine. With all those teeth he's got now we have learned that Liam loves having his teeth brushed! He goes crazy for it. We are lucky that he does too as many kids who are intubated as long as Liamwas grow a pretty strong oral aversion. His acceptance of pacifiers and the toothbrush is especially encouraging since Liam has never regularly eaten by mouth. We hope to be able to introduce some solid foods someday and so this is a good sign.

Karin is doing just as well as Liam. She continues to amaze me with her patience for the constant phone calls. Insurance Companies, pharmacies, doctor's offices, various state agencies, being Liam's Secretary is a full time job ( I know I say this in nearly every post but it bears repeating). The gym has been a welcomed little daily break for her and she continues to help motivate me to get there every day. Today was the first of a new weekly tradition of having Mommy Days. From now on, Wednesdays will be mommy and her boy days without nurses or appointments (if they can be scheduled that way). We have been trying to get the scheduling right with our nursing company for this for a few weeks now and it has finally started. Karin and Liam both need a day of break from the scrutiny of nursing during the day. A day to be by themselves as mother and son all the while waiting for Daddy to come home. Normal family stuff. Sure we have always had the weekends off and this doesn't change our overnight care three nights a week but this is just for them time. Today they watched movies and took naps and played on the floor and had a quiet day during the snowstorm.

Me? Well not much going on with me. I'm working and coming home to try and spend my own private moments with the Boy. I get my time with him at night after work and after Karin goes to bed but 3 nights a week we have a nurse with us and I look forward to my weekends. I spend a lot of time with Liam while he is asleep. His schedule doesn't really jive with my work schedule but that's ok. I make sure to get my moments of play each day. In a way, its what I have always done; the same was true for all of our hospital stays. In the hospital for each of our long term stays his medicine schedule had him getting some serious sedation four hours before I went to work and just as I left work so he was pretty sleepy for both of my long stretches with him. We're pretty good at holding hands while he sleeps.

I'm pumped that Lost is back. I haven't seen any good movies. For some reason I find myself listening to a lot of music from college days, a weird little time travel trick. I'm reading Heller's Catch as Catch Can a posthumous collection of his short stories; I'm underwhelmed and a bit disappointed in it given how much I love Catch-22. I can't say that the stories themselves are bad but they are a bit boring. That's it for the what I'm watching reading and listening to portion of our show and unless there are any questions from the audience I will be heading off to bed. Enjoy the snow everyone. It's here you might as well enjoy it.

Saturday, February 6, 2010

Looking more like his Mom lately.

Well, we've been home since Wednesday afternoon and it has been a whirlwind of a week. I've worked everyday this week and besides all the hospital stuff and catching up Karin has been dealing with daily phone calls to insurance companies, doctor's offices and pharmacies. As I've said before, being Liam's secretary, sorry executive assistant, is a full time job. We are still very tired. Liam is adjusting back to his old self although he owes us a poop and better pay up tonight.

Hopefully the weekend will be nice and uneventful. We all need our rest.

As I was writing this I started hearing what I thought was a leak in Liam's trach. After a thorough investigation I have concluded that it was actually the cat. Snoring. Lying next to Liam's crib. Good thing I woke up the boy to make sure his trach was attached correctly and that his ties weren't too loose. Awesome.

I've got a few longish posts about the hospital stay and about being hospital parents 80% written but they are in notebooks and the last thing I feel like doing at this particular moment is typing and editing so I'll once again quickly throw a few random thoughts together and call it a blog post.


As has so often happened this week, the topic of conversation last night turned to some part of digestion.
"yeah its kind of like that coffee that I read about that is only brewed after the coffee beans have been eaten by some monkeys and shit out." I said, making conversation with Karin when without missing a beat or cracking a smile she looked at me and said matter of factly,

"oh, you mean Folgers."

I hadn't laughed as hard in weeks. Just thinking about it now makes me laugh. I am very lucky to be married to someone who after all these years still makes me laugh more than anyone else I know.


Liam has woken up and sorry folks but he's a lot more fun than typing on this silly laptop so I am signing off for the night. Hope you all have a pleasant weekend and If I don't make it back before Sunday night, Go Saints!

Thursday, February 4, 2010

Hospital Stay #4 comes to a close.

He's home!!

Yes we are home from the hospital and all three of us are exhausted. Liam has been asleep most of the day and tonight. Karin is crashed in the bed upstairs and I will fall asleep on the couch next to Liam as soon as my DVR'd episode of Lost is over. A recap post of the stay and a longer post on the little things to remember to survive your next hospital stay are in the works as I have actually put pen to paper quite a bit in the past few days.

But for now I escape to The Island. I just don't know when.

Monday, February 1, 2010

Hospital Stay #4 Day 4

Another day of progress at the Hasbro Hilton. (Even after spending 108 days here at Hasbro Childrens Hospital in the Intensive Care Unit I never heard it referred to as the Hasbro Hilton) Since nothing significant ever happens in a hospital unless its emergent, we finally met with some of the doctors we really wanted to see today. KArin met with our amazing pediatrician who was very happy to see how much better Liam is feeling. He has called us a few times a day since we got here on Friday but today was the first day he was able to see Liam. While he was here talking to Karin, and waiting for me to get my lazy ass up and at 'em, Liam's equally amazing surgeon came to see him and check out all of his x-rays. While hanging out and chit-chatting with Karin our surgeon started complimenting our pediatrician on a lecture he gave recently and then he went ahead and did it. Right there in front of Karin. He popped the question. "So uh, will you be my kid's doctor?"

We feel like matchmakers. Both of these wonderful men have meant so much to our family. Both have been there for us through some of our highest highs and lowest lows. And while we always knew that our pediatrician was a brilliant man and wonderful doctor, to have another brilliant, wonderful doctor trust him with his own children reinforces our belief that we could not have chosen a better pediatrician.


Liam was able to start eating today! We started slow with only a teaspoon per hour of pedialyte but have doubled that since this morning and doubled that again about an hour ago he will be back to formula soon as long as he tolerates what we are pumping in tonight. Things are moving along swimmingly and since he barely slept in the last few days because of the pain he was in, he has slept all day and continues to be sound asleep.

Karin is at home tonight. I am here. What will I sleep in you ask? Don't worry, the uncomfortable chair in Liam's room unfolds to become a very uncomfortable bed!
With one of us here with him at all times and me going back to work today Karin and I have spent a total of 0 minutes together outside of this hospital room in the last 4 days. Someday I might actually get to spend time alone in a room with my wife again. Someday.


Okay, Liam report winding down. On to the results of the 'How many Law & Order episodes did we watch over the weekend?" Well, the answer surprised me. Law & Order has been a time wasting staple of ours through all of our different hospital stays and with at least one of us here with Liam 24 hours a day and it being shown on no less than five of the channels we have here I expected a much larger number. I did have a few guidelines that I suppose I should have outlined before the weekend. 1.) If we found an episode we had to stop flipping and watch the remainder of it. 2.) Since we are in the hospital and things like talking to doctors can get in the way, watching the whole episode was not necessary to count as an episode watched.

Final Tally: 14.

I am disappointed. I thought we'd be able to get a few more in there. But A&E was showing an Intervention marathon on sunday and that is one train wreck that neither of us can look away from. So it stayed at 14 episodes from Friday morning to Sunday night, which would make the winning guess Kathy's guess of 22. Unless we are using Price is Right rules in which case the winner is me with a guess of one dollar. Congratulations Kathy. Enjoy the bragging rights.


Oh, I have pictures! Nothing special just a few pictures I got with my phone today because the boy was looking so damn cute while taking a nap with his mom. We haven't been able to hold him the last few days because of how much pain his belly made him feel so it truly warmed my heart to walk into his room after work today to see this...And then I had to take this next one to show off all that hair! Love those curls.

Its late and I'm tired. I will lie down and pretend to sleep as the nurses and respiratory therapists make their way in and out of the room. Hopefully the housekeeping staff will get to this floor later than last time I tried sleeping here. Gotta love how they think they can vacuum around my chair without waking me up.