Too much information.

When Liam gets upset his heartrate goes up. It goes up when he poops too. I know this because a big yellow machine attached to his foot tells me so. When Liam sleeps he breathes at a rate of 26 breaths per minute. Not 25 and not 27 but 26 breaths per minute. I know this because the big machine that is attached to his lungs tells me so. When Liam eats his breakfast, lunch or dinner he eats exactly 100mls of formula. Overnight he eats exactly 250mls more of formula to make sure that he gets 409.2 calories per day. I know this because the feeding pump that is attached to his stomach tells me so. When Liam hears his daddy come home from work it makes him very happy. I know this because he opens those eyes wide and gives me an enormous toothy smile. There aren't any machines that can read that data.

Next I'll have to go through all my vinyl.

I spent much of the evening tonight gong through a big old box of CD's that I found in my basement the other day. Many of these CD's have not yet made it onto my computer or my ipod. a wonderful stroll down memory lane that will no doubt continue all next week as I listen to some old gems from my youth while at the gym.

How many of you out there remember this little ditty?

You feeling Lucky? Well are ya?

I'm tired. Exhausted really. Baby not sleeping at night, first week back to work since vacation, going to the gym every day, blah, blah, blah. Excuses, excuses. Home, gym, work, home, gym, work I just don't really have a whole bunch to blog about. I know, I know you are all heartbroken at my lack of correspondence. You've all been holding your breath waiting for some wonderful new updates haven't you?

Anyway, why don't I do what I always do when I complain about having nothing to blog about Random thoughts bullet style. Time to empty the clip...

• The V key on my laptop is not working very well. I suppose it would be more annoying if it were a letter that I use more often but I use the V just enough that it throws me off my rhythm every time.
• Liam is doing wonderful. So wonderful that there is nothing new to report. Always remember 'no news is good news' it has been a motto of sorts for us since he was born.
• Thanks to a spark of inspiration a few nights ago I wrote about 1500 words of a new piece of fiction. I really like how its coming so far which is why its so puzzling that I'm jinxing it all by writing about it here.
• I read an article the other day that says the average (had to be written three times thanks to sticky V key) American claims to have read only 4 books in the past year, and that 1 in 4 Americans didn't read any books last year. 4 Books?! Seriously? And we wonder what is wrong with this country. We're surprised that our time as the world's only superpower is drawing quickly to a close. 4 Books. I've already doubled the national average for this year and its the first week of March. On the same day I saw a trailer for a movie called Mcgruber. This is a movie based on a four minute sketch based on a lame TV show from the 80's. That's right a movie based on a sketch based on an old show. And millions will line up and pay hard earned cash for it. I can't help but think that the two points here are related.
• They are playing baseball in Florida right now. Anyone who knows me in person knows how tremendously happy that makes me.
• I know what you're thinking. Did he fire six shots or only five? Well, to tell you the truth, in all this excitement, I've kinda lost track myself.
• It's 1:00Am and Liam has just woken up so its time for me to hang out with the boy and hopefully he'll fall asleep after we read a few books. Once I get him to sleep it will be time for me to sleep. Because as I said before, I'm exhausted.
  

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.