The Days are Just Packed.

I had big big plans for this week away from the day job. Big plans. Work to be done around the house, fiction to be completed, and some longish blog posts on surviving a long term hospital stay without losing your mind. None of that got done. None of it.

But that's ok with me because what I did do with the time I should have been "productive" was so much more fulfilling. All week long the only thing I did was spend time with my boy. We read together, we napped together, we stayed up until 5am together. It was wonderful. It would have been nice to get a whole bunch of projects completed this week so that I could look back on my To-Do list and be proud about how much work I had gotten done but I wouldn't trade one single second of the wonderful time with my boy.

So here are the pictures in a tidy little slideshow. Starting with a nice walk we took to my Nan's house and going through the pictures I took of our trip to the zoo.

And what a voice it is.

The three of us just returned from Liam's VIP clinic appointment. Although Liam is a very important person the initials in this case refer to the Ventilator Integration Program. We meet with a number of Liam's services at once here and it makes it much easier than having to visit them all in separate appointments. Today it was his pulmonologist, a pediatrician who is following Liam's case (though is not Liam's "pediatrician" proper) a speech pathologist and his neurologist. Liam did great.

The appointment went very smoothly and there are no major changes to his care but we were able to take a very encouraging and exciting step forward today. We got to hear Liam's voice again! The first time since he had his trach put in last July. The trach that Liam wears has what's called a cuff that inflates to fully block his airway from air escaping during both inhalation and exhalation. Today we deflated his cuff which opens up the space around the trach tube to airflow, thereby letting air pass by his vocal chords again. Its the first step towards using a speech valve in his ventilator tube which would let him use his voice more often but for today it was just a trial to ensure that his lungs could handle the extra work of staying inflated on their own. He passed with flying colors. He gave us a groan to let us know he still had a voice.

The whole process will take a few months before we get a schedule to wear his speech valve but today was a great first step.

I wasn't planning on this post being much more than a quick wave hello while I wait for Karin to get back from the gym; But I do have pictures from yesterday when we took a family trip to the zoo! We saw animals from all over the world. Liam's favorite?? The geese found outside the zoo in the parking lot. That kid of mine.

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.


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

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Apparently the state of Utah has gone batshit crazy.

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Sleeveface some very cool photos involving album covers.















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








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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.


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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.

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.

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.

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.

g'night.