Thursday, December 31, 2009

2009 Under Pressure.

After an absence due to holiday business and overall exhaustion it is my triumphant return to blogging! Its a long one folks as I break down the year with how it panned out for me, as well as my favorite Movies, Books, and Music. It's been a strange but wonderful year. Settle in and enjoy my quick bloggy breakdown of the year that was.

The Pressure Support 2009 Year in Review!

Home and family life was a bit chaotic for us this year. Liam was born just before the new year and so we spent the first minutes of 2009 with Liam in the NICU.
Here is the breakdown of the rest of the year...
January 1st to May 28th: Hospital, hospital, hospital, trip to another hospital for a few days in Boston, Hospital, Hospital.

First Two Weeks of June: Two wonderful weeks of moving into our new house with Liam at home with us. Nightly battles with the pulse oximeter. The first weeks and days of being a family at home. No sleep. A flooded basement three times resulting in the digging of an eight foot deep trench to replace main sewer line into the house. (thanks for the help Uncle John, and Dad) More time spent with Liam. No sleep. Wonderful exhaustion.

Mid-June to October 1st: Hospital, Hospital, Hospital, Major Surgery, Hospital, Hospital, Hospital, Another Major Surgery, Hospital, Hospital, Hospital, Respiratory Training, Ventilator Training, Infant and Trach CPR Training, Hospital, Home!!'
October 1st to December 31st: Home! The most stressful (that's saying something) and satisfying months of my life. Life at home with Liam becomes more and more routine and fulfilling. Life has new meaning and one look in Liam's eyes can wash away anything that bothers me. Its all here in the blog which was started a few days before Liam's discharge.
There you have it, 2009 for me. If it seems to be written as a big blur that's because it was. Difficult to explain but while I can remember specific details of nearly every event it all seems to have gone by too quickly to process. A strange mix of fear, stress, and sadness, with unbelievable pride, happiness, and fulfillment. Parenthood is a confusing state of affairs.


I didn't see too many movies in 2009 so a round-up of my favorites would be hard to compile. Coraline seems to be the only one jumping up and down and waving its hand in the air in my mind. Well that and Wall-E which I watched with Liam the other day. I didn't see Star Trek, The Wrestler, The Hangover, Inglorious Basterds, Where the Wild Things Are, District 9, or any of the other movies I wanted to this year. I'm looking forward to catching up in 2010.


Books were dominated by Neil Gaiman this year as I started with American Gods in the hospital and went on to read Coraline, The Graveyard Book (both with Liam), the first five volumes of The Sandman, and Signal to Noise. I read a bunch of other books this year, but they were mostly re-reads or didn't have much impact (I'm looking at you Perforated Heart by Eric Bagosian). But I'm glad I waited to write this little 'best of' piece because yesterday I found the best. Yesterday I read the best book I have read all year. Then today I read it again. Persepolis seemed to jump off the library shelf at me. I had heard of the book many many times but never made the time for it. It is easily the most powerful and thought provoking book I've read in a few years and I just now found out that it was made into a movie in 2007. I'll have to check that out, but anyone reading this should run to their library to pick up this little gem published in 2003. I just wrote my mini-review of it for Here goes....

I never got that into graphic novels. I read the ones that everyone is supposed to read Watchmen, Dark Night and the like, started The Sandman this year and am very happy I did, but I never dug deeper into the genre. Its not that I wasn't impressed or didn't appreciate the talent in storytelling, dialogue, overall writing as well as artwork; I was very impressed actually but my to be read pile always superseded jumping into something new. Persepolis has changed all that. This book is incredible. At times hilarious and heartbreaking. I was almost in tears more than once. A young girl growing up during the Islamic Revolution of Iran and coming to grips with the differences between the solid and close-nit environment at home and the violent turmoil outside. Brilliantly and beautifully drawn in simple shapes of only black and white. A quick read, I flew through it in close to an hour immediately upon returning from the library with it, I waited and thought it over before reading it again the next day (today). I recommend this to everyone. Brilliant storytelling and a heartbreaking true story.
Just go read it.


I didn't listen to a variety of music this year and I certainly didn't listen to much new music. The only new albums that I dug into were Ben Fold's new album Way to Normal which I loved of course. He could sing the phone book and I'd buy it. And Regina Spektor's new album Far which I LOVED!! After spending close to 3 months listening to it over and over again I could still put it on today and just listen on repeat. It will always remind me of time spent in the PICU of Hasbro Children's Hospital but since it all ended well that's ok with me. Aside from those two new albums I think I listened to more Talking Heads than any other band and Tom Waits more than any other solo/songwriter.


The Red Sox disappointed down the stretch. Injuries and a lack of offense had them stumbling through the second half and they were lucky to even make the playoffs. We were beat handily by the Angels and I had to sit by and watch the Yankees win the championship. Oddly enough I didn't yell that much at the TV this time. Liam has showed me that there are more important thing in life than baseball. Funny, it only took 32 years to learn that lesson. The Patriots stumbled through this current season but seem to be playing their best football of the season as the playoffs begin in two weeks. We'll see what happens there.


There you have it. My summary of my 2009. Family life is wonderful, work life not so much. I started the year writing (nearly) every day in my Carepage to get out updates to the family and I ended the year writing (nearly) every day for this blog to get out updates to the three or four of you out there reading this. Let's see if we can't keep the writing part going through next year.

Happy New Year All.

Oh, and P.S. that meaningful post for Liam's first Christmas and First Birthday that I mentioned in the last couple of posts . . . just because its not posted doesn't mean its not written. Just means I decided its none of your business. No offense.

Sunday, December 27, 2009

One Year.

One year old today. We celebrated Liam's first birthday today with an open-house style party where he got to meet many family members for the first time. It was a wonderful and emotional day. The three of us are drained and I regret that I don't have more energy to write my big one year memories of his birth post. Its coming so consider yourself warned, but I'm far too tired for both the physical and mental act of writing it tonight. Save to say this. . .

Happy Birthday little man. I never knew the true meaning of pride until the night you were born, and every day since, I have grown more and more proud of you.

Saturday, December 26, 2009

Liam's First Christmas

A wonderful first Christmas. Liam slept through much of the festivities of the morning but was awake to play with mom and dad all afternoon. I have plenty of pictures and it was an overall great time. Because of that I am exhausted. I'll recap the holiday soon but tomorrow is his first birthday and so I'll be just as much if not more exhausted tomorrow. I wanted to write a big post about what Christmas was like last year as we got ready for Liam to be born. I'll get to it sometime but right now I need sleep. Night all. Hope you had a good Christmas.

Friday, December 25, 2009

Santa Came!!

Liam's first Christmas!!!! The picture is from yesterday. I love how Liam has taken to spending his afternoon nap on the couch rather than in his bed or playpen. Just like his daddy.

We are waiting for my parents and sister to arrive to start our "Christmas Morning." Karin and I got up a few hours ago to relieve the night nurse. We have spent the morning drinking coffee and watching National Lampoon's Christmas Vacation and I am playing on the computer. Liam is all gussied up in his first Christmas outfit of which I'm sure I'll post pictures later.

Christmas Eve was fun. Lots of errands to run but also lots of relaxation. Liam helped me wrap Karin's gifts while she was out buying groceries. Baking was accomplished and more will be done today in preparation of Liam's birthday tomorrow. Liam had fun being snuggled and read to all day long.

All of the sudden Calvin has been interested in the camera. I guess he wants his 15 minutes of blog time.

Look at that hair in the shot on the left!

Mom keeps the kid styling in the coolest sweaters.

Merry Christmas everyone. Hope you spend the day with the ones you love.

Thursday, December 24, 2009

When we were kids my brother and sister and I would call this Christmas Eve Eve.

Another award winning photo taken by Karin and sent by email to cheer me up at work. The Boy takes a nap on the couch just like his daddy.

I've been late to my blogging duties but the good news is that thanks to a whole new strategy my scores in Tower Defense have climbed considerably. (I have a problem with these addicting little flash games and this one has taken over the past few nights.)

Karin has a phobia of people dressed up in those big head costumes and holiday characters. She already has anxiety about the prospect of a future trip to Disneyland. Its the way you can't see who people really are that bothers her. The Easter Bunny came to visit us all in the NICU on Easter and Karin's expression is priceless in all of the photos. So it comes as no surprise that all responsibility of bringing Liam to sit on Santa's Lap will fall on me. Still too susceptible to all the germs out there it isn't possible this year but in the future you can bet that Karin will be on the other side of the mall when Liam screams about the scary man in red shouting "Ho, Ho, Ho." in his face. Some of these Santas make me start rethinking whether or not I want to subject him to that either.

Liam and I are still plugging along with Bilbo, Gandalf and the Dwarves of Middle Earth. I'm excited because Liam is about to meet Gollum. And The Ring. I on the other hand have taken a very short break from fiction to read Barry Moser's In the Face of Presumptions. A gift from Mom for Christmas a few years ago I have read it a few times already but the essays lend themselves to re-reads. Born in the deep south and spending a few years as a Pentecostal preacher, Moser would later pick up and move to Massachusetts to become a master Print and Bookmaker as well as teaching at colleges all over the Northeast. My dad met him by taking his class at RISD. They would later become colleagues and friends. His pieces inspire art. His attitude that talent is far more common than the determination, and hard work needed to produce "good" art reminds me that anyone can do what they want as long as they are willing to do the work. A good read and helping me to tap back into my more creative side.

We are a bustle of energy here at the Olson house as we prepare for Liam's 1st birthday with a frenzied sense of anticipation. A major milestone for sure. Christmas morning with my family will also happen here and so we are eagerly awaiting a fun weekend of holiday cheer.

It occurs to me that I have never introduced the cats. The Boys. Or at least that's what we used to call them before The Boy came around. Linus and Calvin. They are incredibly good with the baby. Linus (the mostly black cat in the back of the photo) has been a part of the family since Karin and I first moved in together in Vermont. October 1998. Linus' mother was a mostly feral Vermont barn cat. He was only 4 weeks old when we got him. Smart, fast, and strong he changed the way I always thought about cats, as I am partial to dogs. He has always ruled the house and now that he realizes he still comes before me in the pecking order is ok with handing over control to Liam. He is usually not far from Liam although he has only rarely gotten close enough for Liam to touch him. Protective and observant, the nurses have taken to calling him Nurse Linus as he is always there watching them. He's my eyes on the boy when we aren't around. Calvin is the mostly white cat front and center. Rescued from a New Jersey shelter at 9 months he is much less intelligent than Linus. Kind of fat, a bit lazy and always begging to be fed he would never survive outside but he is the affectionate one and loves to be around Karin. He is fine with Liam being around but shows little to no interest. He is much more interested in the stuffed animals in his crib than he is in the baby. There you have it, Mom and Dad, Liam and two cats, now you know the whole clan.

I hope Christmas treats you all well. I hope you all get to spend time with the ones you love because it really is all that is truly important. Night all.

Sunday, December 20, 2009

Ready to call it the best Blizzard of 09.

I used to get a lot of nosebleeds as a kid. Radiator heat, along with a woodburning stove in the house I grew up in, meant dry, dry, dry air. A cast iron kettle of water on top of the woodburning stove aside, any humidifier would have to struggle to keep up in our house and so I knew all the tricks to stopping a noosebleed. I even have a big book of Ripley's Believe It or Not illustrations with a huge blood splatter on page 132 due to an unfortunate nosebleed during some after bedtime reading with my little brother. I should scan that page to show you. Anyway, nosebleeds weren't that big a deal. A bit of rolled up tissue, a pinch to the bridge of your nose and lean forward, or lean back, a wad of bread stuffed between your upper lip and front gums - I knew everything to try. I had it under control.

Liam can't have a nosebleed. Sure his sinuses and air passages can dry out just like anybody else's, but breathing through his neck means the blood has nowhere else to go. This morning Liam scared me more than he has since he got home. His trach tube seemed filled with blood and panic was about to set in. Karin grabbed her phone and I thought she was calling 911 because its what I was about to do but she was calling our pulmonologist's nurse practitioner who has helped us out of all our jams. Its good thing that Mom's cooler head prevailed because it seems that these type of events are very common in the wintertime for trachs. Another one of those things that you don't learn about until it happens. Now I know. I won't make that mistake again. We suctioned him a few times and adjusted his heater and humidifier to compensate for the dryness in the air due to our radiator heat. Liam is none the worse for wear. The whole event was much more traumatic on me than it was on him and when it was all over he simply rolled back onto his side and went back to sleep. Ho-Hum.

I am proud to say that after all that excitement and after shovelling the waist-high snow that drifted onto my driveway, I created the greatest Blizzard meal ever. Sure the ingredients were all made by my Mother-In-Law and so I can't take all the credit. And yes, Karin gave me a few of the ideas that really helped the execution but I was the one in the kitchen so its my dish. The Thanksgiving Casserole. The Turkey Shepherd's Pie. The Blizzard Bake. Yeah, I like that last one.

The Blizzard Bake.
Grease casserole dish with a thin layer of butter and press a layer of leftover stuffing to create the crust. a few tablespoons of reheated Turkey gravy and a thick layer of shredded turkey meat. A few more tablespoons of gravy and layer on some frozen peas. Salt and pepper before topping the whole thing with leftover mashed potatoes. A few tablespoons of melted butter over it all to form a nice crusty top. 400 degree oven for an hour. Delicious.

It may not present as the most beautiful dish in my repertoire but it certainly is the most filling and satisfying on a cold blustery day after spending a few hours shovelling snow.

I feel that I should mention that Karin hates it when I take pictures of our food. She thinks I'm being weird when I won't let her eat until I take a few pictures of the plate. She's the weird one - here's a picture of her dinner in case you were wondering.

As I mentioned in yesterday's post Karin and I have truly been anticipating a day like this for years and we were not disappointed. A full day of quiet togetherness as the snow continued to fall outside. Pajamas stayed on all day and each and every one of us got to take a nap. The coffee was delicious and the Patriots beat The Bills. What's better than that?

Christmas (and winter) is here.

Christmas has finally hit the Olson house.

With the impending blizzard on its way I spent the morning running our errands for the weekend and In-Law's visit. Most important errand was of course the purchase of our first family Christmas tree. Its a nice one. We didn't really get a chance to celebrate the holiday last year because we spent it in the hospital so we have been hoping to make up for that this year. I bought the tree down the road and started getting the lights put on as soon as I got home.

Karin's parents came up from New Jersey to spend the weekend. Undeterred by the forecast of a foot of snow they are safely staying in a hotel tonight after spending a wonderful day with us. My Mother-In-Law cooked an absolutely delicious dinner while Karin and I decorated the tree. After both, we had our own private Christmas as they will be at home in New Jersey for the 25th. The ornament pictured is one of our gifts from them and is prominently displayed front and center on the tree. We had a great day getting ready for the holiday and for tonight's storm. Weather Channel on TV all day as we waited patiently for the flakes.

With the amount of snow outside now, I can't tell you how happy I am that our new home has a garage.

After the In-Laws left, Karin and I tidied up the house, got Liam ready for bed and watched a movie as the first inches started to fall outside. I forgot how good a movie Ratatouille is. The scene at the end when the critic tastes the dish blows me away every time. Nothing can bring the mind back to childhood like a familiar taste. Sometimes, food is magic.

On the topic of underestimating things, Karin has been watching King of the Hill on Cartoon Network at night and again, I forgot how funny, smart, and well written that show is. Flying under the radar for all those years.

Although I really like the new Christmas tree ornament pictured above, this one is my new favorite. This is a Bivona 3.5 neonatal trach. Its a custom fitted Flex-tend model. The balloon, or cuff, on the end pointing up towards the tree is compromised and unable to hold its place in Liam's airway anymore. It was Karin's idea after sanitizing it to string it up with some silver holiday string and display it on the Christmas tree. I love it. I suppose it could be seen as gross but the gallows humor that has developed between Karin and I in the last year makes this both funny and touching.

I really miss my photoshop. Gotta get the upstairs desk and computer situation worked out pronto.

Outside there is probably 4 or 5 inches on the ground and the storm has just gotten started. First storm in the new house and we have battened down the proverbial hatches. Batteries are charged up for the vent and pumps, refrigerator is full and we have nowhere to go until Monday afternoon. I have been looking forward to being snowed in with the family for months and it has happened with the first storm of the season. Yay me! Books will be read. Pictures will be taken. Football will most definitely be watched and hopefully, naps will be taken.

Well, Liam is asleep in the crib next to me and I am fading fast. Another Law & Order rerun just started on cable and my pillows are calling my name. My house and heart are decorated in holiday cheer and I am feeling upbeat and positive about the coming season and new year.

Today was a good day.

Saturday, December 19, 2009

One year ago.

December 18th 2008. One year ago today. A bit nerve wracking but a pretty routine Thursday. It was free meal day at work. Once a year the hospital where I work feeds all of its employees a free turkey dinner with all the fixins' as a thank you and holiday celebration. Eggnog poured while you wait in line, along with cheese platters and passed h'ors duevers. Pie and cake served by the top brass of the hospital and an overall goodtime and holiday cheer. A day that for most employees has that 'last day of school' kind of feel. Most employees, but not mine. I run the cafeteria. This is our super bowl. The day that we are told in January that we are not allowed to take a vacation around. The planning starts weeks and weeks earlier. I thought at the time that it was real stress. I used to think that food was something worth worrying about.

I don't have to work until 11:30am, which was very helpful to us throughout the pregnancy because we would have at least 3 doctors appointments a week. Scheduling them in the morning afforded me the luxury of being there to support Karin and see every ultrasound in person without using any sick time or go unpaid. On this morning I thought I might be cutting it close but the fact that Liam wasn't growing at a rate they were happy with, there was no way I would be missing this one. Work would have to wait. The cafeteria would get on fine without me for a few minutes. Or for what I thought would be a few minutes. Level II ultrasounds aren't always necessary. For most pregnancies they aren't even used but with our history this was our fifth during Liam's pregnancy alone. After the first two though they were used just to get the most accurate measure of his length. Liam grew in spurts like most kids but lately his spurts had gotten smaller and smaller.

The Prenatal Diagnostic Center or PDC at Women & Infants Hospital has always been a stressful place for Karin and I. Good news was rarely heard while next to the big old GE ultrasound unit the size of a SmartCar. We had been through this drill before in our 5 year journey to bring home a baby. The room remained dark while Dr. Carr performed the procedure and Karin and I squeezed each other's hands while we waited for his results. As sweetly as he could, he put his hand on ours and gave us the news.

"He's growing alright." He said in his compassionate and positive way. "and all the parts I need to see are there but he's not growing nearly as much as he should be. Now there are things that we do in this situation to make sure that things go smoothly. Bed rest. We'll put you on bed rest so that we can make sure that all of your body's energy can be dedicated to providing for that beautiful little guy. And this way we can better monitor his growth and if we need to - we may need to take him out a little early to care for him in the hospital. He will show us what he needs and we'll be able to give him that but it means that your bed rest will need to be in the hospital." The words we painful. Like a hard freezing rain stinging my cheeks as they hit me. I think we both saw it coming but our hope kept us from really entertaining the thought. Dr. Carr held Karin's other hand in his and asked if she had any questions.

"So I can go home and get some clothes and things together and go to the hospital tomorrow?" She asked as she fought back tears.

"I'm sorry, you'll be admitted now." Dr. Carr said with a frown and patted her hand lightly. "We'll call ahead so we can get a room set up for you. We'll make sure you don't have to wait in the emergency room at all." You'll have fetal monitor tests three times a day and we'll get ultrasounds every few days to check on his growth. I'm sorry Mrs. Olson but this is the best option to make sure we do what's best for the baby."

We knew that. He left us alone in the dark room and we collected our thoughts. We cried and we held each other and we told each other that everything was going to be Ok. We had been here before. A few years previous we had been admitted to Women & Infants to have our first son Ben. He had passed away after 26 weeks gestation. This whole situation felt all too familiar. Familiar but different. Instinct? ESP? Call it a gut feeling but I refused to believe that we would have a repeat of that. I knew this time would be different and Karin and I held each other and agreed that God would not do this to us again. What kind of a God would he be if he did?

Being admitted to the hospital seems like a blur to me now. I already knew every employee of the hospital; I had been feeding them lunch everyday for about 4 years. Cashing their checks at the credit union in the basement for a few years prior to that so I knew all of these people well. A blessing and a curse. Stephanie in admitting made sure that we got a nice big corner room with a decent view and a private bathroom. She was helpful and professional, and we were quickly whisked upstairs to unpack and settle in. Nurses bustled in and out of the room to take vitals and fill out paperwork. A whirlwind of activity surrounded us as Karin and I moved in slow motion reeling from the events of the past two hours and trying to comprehend how we would survive the possibility of Karin staying in the hospital for three and a half more months until Liam's due date. I made a list of things we would need from home. I remember my hands shaking as I wrote it and we both broke down as we called our parents to break the news.

My parents came to the hospital to sit while I raced home for supplies. Karin's parents made arrangements to get up to RI from NJ as quickly as they possible could. My year long education in family, love and support was about to begin. Lessons in being loved and supported while at the same time loving and supporting.

I was able to bring everything that I could for the night and Karin and I played cards and watched Law & Order re-runs on cable to try and settle our nerves. My co-workers called and sent up any food items that Karin and I could have desired. If we so much as thought about getting hungry the diet office would send up someone with a snack. Karin got settled into bed and as the evening drew on we had our first non-stress test on the fetal monitor and endured 20 minutes of stress and pain. In essence the test involves listening to his heart beat for 20 minutes as small impulses in the test monitor its activity under stimulus. Liam liked to swim around in there and every move would make it difficult for the instruments recording his heartrate to pick him up. Each time the heartbeat would stop recording, our hearts would skip with him. All breaths held until the rhythmic thump returned. We would play that game three times a day for the duration of Karin's stay.

The night nurses in the long term/ high risk floor have a pretty good system for ensuring quiet on the floor. Ambiens all around! I kid about the nurses but we found that most patients we spoke with would also be given some sort of sleep aid by their doctors. The stress of the visit alone would keep anyone awake and sleep was important for both Karin and Baby. Karin and I argued back and forth over whether or not I would spend the night and she won so I was pushed out the door to go home and spend time with our cats. Sleep was important to me too (so said Karin) and I reluctantly returned home.

One year ago. The start of it all. Life would never be the same and its hard for me to remember what life was like before that day. Today at work it was all I could think about. As we approach Liam's birthday I'll be re-posting entries from my Carepage written nearly everyday for the first few months Liam's life. I'll give some thoughts on looking back on those days knowing what I know now. They won't all be this long or in depth but this is how it all got started. I am looking forward to this project with excitement and more than a little fear. I haven't looked at those pieces or the copious notes I took at the time and I'm not entirely sure that I am ready to process it all. But the more I look back on where we started, the more I am filled with pride about my family and where we are today. This has by far been the most stressful, difficult, and trying year of my life. This has also been the most fulfilling, loving, and wonderful year of my life.

And it all started, one year ago, today.

Thursday, December 17, 2009

The furthest from home he's ever been.

The title of this post should of course be read in the voice of Samwise Gamgee.

We packed up the big boy this morning and headed north to Boston for Liam's eye doctor appointment. It was actually a momentous day because while travelling farther than he ever has this was also the longest amount of time that Liam has been away from the house since he's come home from the hospital. There was a tremendous feeling of accomplishment at the end of the day as we not only survived, we thrived. We were prepared for anything, and we endured the stress of being that far from our comfort zone.

We started the day early because the Boston traffic can make the hour long drive take 2 and sometimes three hours long. Of course, its Boston and so you also have to factor in some "being lost time". I have yet to drive in or out of Boston without getting lost and today would be no exception. Karin got Liam ready while I got all of the supplies into the car. His suction rig, extra cargo batteries for the vent, the go-bag (an emergency bag that always stays with Liam, which contains the spare trachs, ambu bag, syringes, vent tubing, gloves and other sterile supplies for a trach emergency) feeding pump and formula, diaper bag, medical paperwork bag and as much bottled oxygen as I could fit in the car with us. Add to that the stroller in the trunk and we were ready to get going. Until I realized that there wasn't any room in the car for Karin. While not all of it was necassary today we have no way of knowing what equipment we may need at any given time. Everything needs a backup or two in case of some sort of equipment falure. I took everything out and repacked the car to make room and off the three of us went on our adventure.

Liam likes the car. I have heard many people talk about putting their kids in the car to get them to sleep but Liam usually stays awake and watches the world go by the windows. He doesn't mind it at all and didn't give us any problems today. We made our way into the city limits before I got really lost and started to panic about the fact that I had no idea where I was and only a vague idea of where I was headed. After a few lucky guesses and a call to the Children's Hospital to have them help us get there we ended up only a half an hour late. Driving in Boston sucks and at one point I passed four sidestreets in a row all one-way streets going in the opposite direction I was heading. How do you have four blocks of one-ways going the same way??? Only in Boston.

After making it in to the hospital and finding the office things went very smoothly for the rest of the day. We weren't forced to wait very long and all of the doctors we saw were helpful and compassionate and were very good with Liam. Liam's vision is actually stronger than we were expecting and his eyes and vision will continue to develop until he is about three years old. Liam has severe eye damage but things are apparently not as terrible as Karin and I were prepared to hear. Which is nice. With most of Liam's doctor visits the exam can take place no matter what his mood or alertness, but the eye doctor needs a fair amount of cooperation and while Liam is very quiet, polite, and well behaved when doing so, would prefer to do the opposite of what any doctor needs him to do. He spent much of the time during all today's tests either closing his eyes or craning his neck to look anywhere but where they needed him to. I didn't sit in traffic for two and a half hours to get incomplete data and he was going to sit there until he got it right! He eventually did and we are all quite pleased with the results.

The ride home was quick and uneventful. I got to listen to the radio broadcast of John Lackey's press conference on becoming a member of the Red Sox which was cool and the three of us knew we were on the tail end of a long day. I would be leaving to go to work once we got home and unloaded but we made the best of it and when we returned home Karin and Liam both got to take naps. I can't tell you how proud I am of my whole family. This could have been a tremendously trying day but since we were well prepared and because Liam is such a well-behaved little guy things went as smoothly as we could have hoped. Long trips and time spent away from our comfortable little shelter aren't as intimidating any more. Watch out world, here come the Olsons!

Tuesday, December 15, 2009


Liam had an appointment at the pediatrician's office today. Its been one month since we've seen the good doctor which is the longest its ever been since meeting him. He's a big fan of Liam's. Nothing to report as it was a well visit. Just a few questions to keep the chart up to date and a quick but thorough physical examination. Liam is now weighing in at a plump 21 pounds 2 ounces!! I have friends who have a 2 year old that weighs 24 pounds. He is now 26 inches long which is pretty low on the curve but we aren't worried about that. He's just the right size for us.

Having the quick Dr.'s appointment today is actually a big help because tomorrow we have to pack up the whole kit and kaboodle and head on up to Boston. One of the meds that Liam is on has a side effect which can damage the retina of the patient. In order to release the med to anyone they need to prove that the patient has follow up appointments with an eye doctor and they referred us. Liam's retinas are very compromised as it is due to his retinopathy of prematurity. His left retina is completely detached and his right was only saved by a very long and specialized surgery up in Boston by one of the country's leading eye surgeons.

I am not worried about the appointment itself but I am nervous about driving up there. Maybe nervous isn't the right word. Anxious? I would be feeling this way even if it were only me heading to the doctors. I just hate driving into Boston at 9am.

This will be the farthest from home we have ever been since Liam left the hospital. It will also be the longest amount of time Liam has left the house since coming home. The list of things not to forget in the morning is enormous. We've been over it and over it and I think we finally have everything ready. BE sure to read tomorrow night to find out what it was that we did forget because you know it will be something.

Well 6am comes quick and we have a nurse tonight so that we can get some sleep before tomorrow's adventure so I better take advantage of it. Good night.

Sunday, December 13, 2009

Just some photos

A quick blog tonight (this morning) to put up some photos I took this morning. I spent most of the day decorating the outside of the house for the holidays but my morning was spent rolling around on the floor with my boy.

Lots of seizures again today but we are still hopeful that it will subside soon as his body gets used to all the meds we gave him on thursday and friday. If we don't see a change tomorrow we'll talk to neurology on monday and adjust his dosages to nip it in the bud.

What are you looking at?
That's what I thought.

Have a great night and a good weekend and a happy Hanukkah for all of my Jewish friends.

Saturday, December 12, 2009


Bit of a tough couple of days to be honest. The past two days have been the most stressful I've had in quite a while. Let's break it down bullet style! These are listed in order of stress level. Least worrisome to sick to my stomach.
  • Work sucks and is stressing me out like crazy but that one goes without saying.
  • Liam's upcoming first birthday open house is quickly coming and there is so much left to do to get ready. Christmas has taken a backseat to the 26th's festivities and we have not pulled out the christmas decorations yet. Spending last christmas in the hospital has us a little rusty and we are far short of christmas cheer.
  • Insurance snafu brought on by a clerical error at my employer's payroll department was still unresolved until last night. Spent all week hoping that it would be fixed before we ran completely out of a couple of Liam's meds. One of which is close to $900 for 2 doses which we would have had to pay out of pocket and hope that it got reimbursed when the error was fixed. I made phone calls all day everyday trying to fix an error that was made in an office three states away from where I work and trying to get 6 different companies and entities to co-ordinate their information. It is fixed, for now but it will be a while before I trust that things are being covered correctly and this will only lead to more time spent on the phone just making sure things are right. Awesome. [Side note on this. People I have spoken to about this who are in pretty good health never seem to think that its that big a deal. "the paperwork will get fixed" they say. "Its a no brainer, once they see its not your fault it'll be fixed right away" They say. This is naive thinking. The only priority for my large insurance company who will remain nameless is to spend as little money on Liam as they can. That's how they stay in business. They are and always will be looking for a reason to drop us from their coverage due to the fact that Liam's lifelong medical needs will cost them enormous amounts of money. The threat of them denying me future coverage because of Liam's "pre-existing condition" (namely - birth) was very, very real. The for profit Insurance based health care system in this country is severely broken]
  • Liam got his RSV vaccine yesterday and his H1N1 booster today. That's a lot of shots for Liam in two days and it didn't take long to see it really mess him up. It seems that according to his neurologist, both vaccines can reduce the effectiveness of his seizure meds while also inducing more seizures. He had seven seizures yesterday and to be honest I have lost count of how many today. (He had 2 in the time it took me to write this post) Hopefully this wears off tomorrow or the next day as it should but it is difficult to see him so uncomfortable so often. The worst part is that other than picking him up and snuggling him through it, there is nothing we can do to help him feel better. Add to that the fact that it is suggested we not give him tylenol tonight because it reduces the effect of the H1N1 vaccine; poor kid's head must be pounding.
I guess that's the extent of my list and in the grand scheme of things I have very little to complain about. My boy is at home and not in the hospital. I have a job in these very trying economic times. I have the weekend off from said job. My son's condition forces me to pick him up all the time to hug him and snuggle him and rub his head and comfort him. His first christmas and birthday are fast approaching and both are going to be wonderful celebrations of how far he's come. Liam just fell asleep in my arms and Garden State just started on cable. On second thought, I guess I've got things going pretty well. Happy holidays everyone.

Thursday, December 10, 2009

Just closing up tabs.

A really extensive list of the first lines of novels. Very in depth and ordered by visitors votes for best first line. Fun to scroll through for sure.

Gimme Friction Baby. Do not... wait, let me get this right...DO NOT, I REPEAT, DO NOT click on the link to this addictive flash game if you have anything to do in the next hour. possibly 2.

I think this is the coolest Tricycle for a kid I have ever seen. More pictures and the artist Sasha White talks of making it for his daughter Delilah here.

Here's a list of lists of the tops of the decade. Top books, movies, music and comics of the past decade from Paste magazine. And while we're at it took on an intern of sorts to compile more lists of Best of's for the Noughtie List. I love the term Noughties for this decade and hope it the one that sticks. That or the oughts.

Famous wartime photos with 100% more superhero action.****

I started a Posterous blog for any of my pictures from my phone or sent to my phone by my wife. Some fun spontaneous shots of Liam over there.

Align Center

Tuesday, December 8, 2009

Living in the Future.

Even when I was working hard to become a photographer I didn't do all that much photo "editing" in Photoshop. Nothing excessive. A dodge and burn here and there but mostly a tweak of the levels and trying to get as much done in the RAW conversion as I could. I used to think that maybe it would be best to just shoot jpeg and save myself the step. Now I know better. I need my photo editing computer up and running because posting these shots only using the editing of Picassa is killing me. I need control! Photo was taken by the wife the other day. Good stuff.

Photography frustrations aside things are going pretty well. Work has been getting better. It seems that I really did win the most recent long running battle with the insurance company and they are going to do the right thing. Although we still have occasional "events" here and there, the seizure meds are working well and the tweaking of his doses has Liam awake and alert for much longer stretches of time. Physical therapy is going well, Liam and Mom learned some new exercises today while I was at work and he just keeps getting bigger and bigger. Nursing care can still be tough because we just want to have our own house to ourselves more often but boundaries are being set and we are better at letting our expectations be known.

I hung our first Christmas wreath on the front door yesterday. Family tradition states that just like we used to say in my church as a kid "Merry Christmas and may it last 'til Easter" we will keep it hanging until Easter. The trick is to flip it over around groundhog day to get a bit more green needles for your buck. I will post a picture soon and hope to hang more lights soon to go along with the wreath.

There's still a bit of white stuff on the ground but it is icy, crunchy stuff. I'm looking for the fluffy stuff. The stuff that can quickly have you looking at more than a few inches to shovel but if you get out there before it freezes together will push right off with ease. Staying home with my wife and son during a major snowstorm is another one of the dreams I've been waiting so long to come true. During last winter we had a few pretty major snow storms with some good accumulation. Through it all, Karin and I made our way back and forth to the hospital every day. Looking forward to a day when we would be able to see our son without changing out of our pajamas. A warm cup of cocoa, the morning paper, fluffy white stuff piling up outside and my boy with me on the couch. I can't wait for that. That's why I'm hoping for big snow storms every weekend this winter.

I've started reading The Hobbit to Liam. It's been so much fun. We aren't very far into the book and I'm already struggling with my voices. All those dwarves and Gandalf along with them is proving to be a bit low for my range and I'm needing more pauses for water. But Tolkein's conversational storytelling style along with songs makes it so much fun to read. This was an important book to my family as my father was so taken with it that I can remember him reading from it at the dinner table when I was a kid. The nurses and Liam's mom read him the big large picture books showing him brightly painted penguins and elephants but I like it just the same to have Liam rest his head on my chest with only my soothing voices comforting him to sleep.

Karin mentioned the fact that we had a photo shoot for a holiday card on her facebook page and within minutes we had about a dozen emails of peoples addresses to receive said card. It was a bit strange how quickly it happened. It is incredible how this baby boy who has been so sheltered from people and germs that he has yet to meet all of his family that even live in this area has touched so many lives because of the internet. We truly are living in the future.

Sunday, December 6, 2009

Holiday Card Day.

Karin has been trying for days to get a couple of pictures of Liam in a holiday looking outfit so that we could make our Christmas card. All attempts were busts and so a change of strategy was in order. Liam is very photogenic but he makes you work very hard to capture his brand of adorable magic.

Instead of having some sort of plan for a photo shoot time we decided to just keep him in holiday clothes with holiday blankets all around and just shoot all day rather than putting some pressure on a few hours here and there.

Although none of the pictures truly scream holidays we did get enough to send out a pretty cool card. Karin and I are pretty unorganized people and we have never sent out cards in the 7 years that we've been married. This year we wouldn't be able to get away with not sending out cards. Everyone wants to know how the baby is doing.

He's doing just fine by the way. We had an ok weekend even though I had to work yesterday. Today we spent the day together watching yesterday's snow melt out the front window and screaming and yelling at the patriots on TV. We read the first chapter of The Hobbit aloud, during which I gave myself a sore throat trying to come up with voices for all those dwarves.

My sister spent the day with us watching the football games and then after going home to finish her laundry came back in the evening with my parents who made us all meatloaf, mashed potatoes, corn and bread. We all ate and laughed and had general storytelling and merriment. The visitors all headed home before 8pm which left a few hours of quiet and privacy before the nighttime nurse came in at 11:00pm. A very nice and relaxing day which could have only been improved with a patriots win over miami.

Snapped this today just in case any of you wanted to see what three days worth of Liam's meds would be dispensed with. This gallon sized ziploc holds all of the syringes used from Friday morning at 6am to Sunday evening at 8pm. I suppose I could do the math but I think the picture is much more fun. Tonight they'll all be separated, boiled and organized by size for re-use.

Breathing's just a rhythm.

As we speed towards the end of the year and the decade I've been looking back on the past year and what, if anything, has penetrated the focus on Liam to make its mark on my year. Each year I do enjoy looking back on what my favorite books, music, movies of the past year would be, but this year there was little in my consciousness other than Liam. I didn't see many new movies over the year and although I did read a bunch, much of that was simply turning pages next to Liam's bed. Regina made it into the memories. She made it big time and for the rest of my life I will always associate her newest album Far with driving back and forth to the hospital. The album never left the cd player of the car and since we would often drive back and forth 3 and 4 times a day we would normally hear the whole album every day for over 3 months.

This song is especially meaningful as a close listen to the lyrics may show. It will always be for us Liam's Picu song, and easily my favorite song of 2009. Enjoy.

Saturday, December 5, 2009

Beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep beep

One of the true pleasures of having a pulse oxymeter at home is those wonderful nights when it decides not to "pick up". Nothing excites Karin and I more than staying up through the night pushing the silence alarm button every three minutes because although Liam is doing just fine the notoriously unreliable piece of equipment just reads blanks. Kind of hard for Liam to be moving around so much if his heart rate is in the teens and pulse ox at a nice robust 32. At least the ear piercing alarm that sounds every three minutes is a nice soothing tone like the comforting vibrations of a dentists drill. How could we not sleep through that?

Wednesday, December 2, 2009

Beers and Bedtimes

As promised over the weekend here are the pictures of Liam's Lager. Brewed by my brother and aged 153 days or the same amount of time that Liam stayed in the NICU.

Just wanted to get the pictures up and make it a quick post tonight. Liam's new medication doses have wreaked havoc on his, and our, sleep schedules. The side effect induced insomnia had Liam falling asleep last night at about 10:30 this morning. No sleep in this house for about 20 hours. Dr.'s have been called and doses have been re-adjusted and hopefully we can all get back to resting when we should soon. Just a matter of Liam's body adjusting to the new meds. Until then, he's in charge of his sleep schedule and we just have to accommodate.

Night nurse tonight and so its off to sleep I go. Like I said, quick one tonight.

Tuesday, December 1, 2009

My Writing Process

I know, I know people are asking me all the time. "With all that time spent sitting on the couch watching TV how do you find the time to blog so often?" The blistering productivity of almost 2 whole posts a week doesn't come easy folks, but since so many of you, my darling readers, are wondering I'm going to let you all behind the curtain. To see how I play the wizard to this blogging Oz of mine.

I have been perfecting my writing process since college. Through all the blogs I've started and then lost interest. All of the short stories I've started, and of course the book that when published is going to make me an overnight success. Every couple of months I get all hyped up about writing and I rush to the bookstore and buy a new Moleskine notebook. Usually I'll pick up a mechanical pencil or a fancy pen because, you know, I've got nothing better to spend my money on like food and rent. I take it home and fill out the reward if found blank on the inside cover with "A nice chat over a couple of beers" and start writing down all the witty things I'm always thinking. Story ideas, character sketches, book reviews, the works. I carry it with me from room to room in the house and it comes back and forth to work with me. The pocket in the back may even get a cool newspaper clipping or funny fortune from the Chinese take-out from last night. I refer to it. I number the pages and date each entry. I do all this for about 2 or 3 days.

Then I sit in front of the computer. I read articles online and check in on all my favorite blogs before I buckle down and really get to what I'm truly gifted at. You'll never find someone so good at procrastinating. It really is a talent of mine. Tomorrow since its my day off I'll really have the time to write something. Tomorrow since we have a nurse I'll really get into some good blog posts. Tomorrow I'll work on that post about health care or the book review and I haven't even talked about what my favorite movies are yet. I have a shit load of writing to do tomorrow. I am always busy tomorrow.

The moleskine stays in the backpack for a day. My hands feel less restricted not having to carry anything or I'll wear the pants that don't have any pockets big enough for my little notebook and then all of a sudden a week has gone by and I haven't jotted a single note. I post a compilation of one and two sentence thoughts but nothing resembling an essay or fully composed piece on my blog. I forget about writing my book, short story or screenplay. The idea for a one act play sounds juvenile and uninteresting and why would I want to really try my hand at writing anyway? I don't have the time. Top Chef is about to start their finale this week and The Patriots were on Monday night football tonight. Can you believe how intense last week's Criminal Minds was? Besides, How can I expect to score 300,000 points on Bejeweled Blitz (using The Wife's facebook account no less) without putting in some serious practice every night? Priorities. Oh yeah, I've got a kid at home too, but we've got enough of the serious meds here to knock him out pretty good. How else we supposed to get anything done around here? [DISCLAIMER * DISCLAIMER * I like to try writing jokes every now and again. Don't bother with the email and comments about drugging my kid to get him to sleep. For that we use Scotch. Blended, because Liam can't tell which is the good stuff yet.] A week turns to a month and BAM! its been over a year and the photoblog hasn't had new photo posted. Or the Super Bowl just happened and I haven't posted in the baseball blog since the All-Star break. Its how I work. Its my "method".

I know what your thinking but its not as hard as it looks to be a "writer" and "blogger" who doesn't write. You can do it too if you really work hard at your procrastination skills. Thinking about trying something is just about as good as trying something right? I'm going to write that novel, short story, blog piece and screenplay.

I'll start them all.