Pressure Support

Time for a change.

2010-07-29T00:43:00.000-04:00

I mentioned a few posts ago that I wanted to switch to a WordPress blog from this Blogger blog. Well, I've gone and done it. The new address is http://pressuresupport.wordpress.com/ and I do hope you'll come by and say hi. So change your bookmarks and your RSS feeds all the new stuff will be going up over there.

Leave me a comment when you get there, and thank you for supporting the Pressure.

Flotsam & Jetsam

2010-07-25T02:00:00.000-04:00

I've got a folder of bookmarks that are just screaming to be linked to from this blog. I know, I know, I told them it would do them no good in their google ranking but they insisted.

This design for a holga inspired digital is beautiful. Simple clean and looks like it would be amazingly fun to use.

If you're not reading Letters of Note from time to time you must immediately remedy the situation. An ever growing collection of correspondence from all sorts of celebrities, historical figures and cultural icons. Some of my favorites include a reply to a fan from Steve Martin, Kurt Vonnegut's letter home describing his time as a POW, and Bill Watterson's letter announcing the end of Calvin & Hobbes. They update daily over there and its usually something interesting.

Artist Greg Peltz decided to do a series of victorian portraits with the characters of Star Wars. My favorite of course would be Boba.

Not really a link but more of a recommendation, Karin and I watched and enjoyed Sunshine Cleaning tonight. Funny, very dark, but ultimately rewarding movie. Allan Arkin is of course wonderful playing the same irreverent grampa character he always does but it works for me.

It was a slow news day at the homestead today which is good. Got some much needed housework done and since we had a nurse for the afternoon (Karin's first break since Tuesday) so we spent it napping and relaxing and baking and going grocery shopping. It was nice. Liam is doing well even if he is a bit tired from yesterday's festivities. Tomorrow the plan is to take Liam somewhere special for being such a well behaved boy throughout all of this activity. Narrowed down the choices but we haven't yet decided so I'll just let you know tomorrow when I will probably have some pictures to share.

Why watch Boston Med when we can live it?

2010-07-24T00:35:00.000-04:00

"I just came from the huddle with the Doctors and the anesthesiologist and they think that he won't need to stay the night and you guys can go home when he wakes up."

[blink...blink. Karin and I exchange a knowing look and stare back at the pre-op nurse as she smiles politely]

"That's good news right? Do you have concerns about going home?"

Karin and I know better than to take the word of one nurse. When you have to answer the same questions from 15 different people you quickly realize that no one talks to each other in a hospital. Just because one person tells you something doesn't make it true. "No there aren't any concerns on our end." I told her "but I'll believe that when we are in the car." She awkwardly laughed and we continued to prepare Liam for the O.R.

Read the rest of our day at the hospital with some blurry pictures from our phones after the break...

Its a bit of long story why we had to spend the last two mornings up in Boston but I'll try to sum up okay? One of Liam's anti-seizure meds has only recently been approved for use in preventing what's called infantile spasms. As with any drug Sabril (or vigabitrin) has some nasty side effects, one of which is retinal damage when used for too long. Because of this, the FDA when approving this drug has decided that there be only one pharmacy authorized to distribute Sabril and in order to receive the drug the pharmacy must have proof of many, many eye exams including an eye exam under anesthesia called an ERG. These tests must be performed only by a Dr. authorized by the pharmacy and of course the closest one to us is in Boston. Got all that?

yarrrrr where be the treasure?

Anyway, after about 6 months of scheduling and rescheduling this test we finally got it over with today. Yesterday was sort of a dry run. The Pre-Op Appointment. The dress rehearsal. We packed up Liam and hit the road about 7am for our pre-op appointment. Its fun. You battle traffic for two hours only to spend another hour waiting in the waiting room before being brought into a room and asked a hundred questions about things that are printed in the chart. I know they are printed in the chart because when anesthesia called us last week to review the chart they asked all of the same questions. When your finished with the nurse in pre-op you wait until the anesthesiologist gets you into his office to ask you each and every one of the SAME FRIGGIN QUESTIONS YOU JUST ANSWERED FOR THE THIRD TIME. Awesome.

So that was yesterday. Today was the real deal and as I said we've been planning for this test for 6 months. As late as yesterday we were told that Liam MUST remain in the hospital for 24 hours to be observed by anesthesia since he is on a ventilator. He would recover in the ICU instead of the recovery room and we would be able to take him home on Saturday. Not exactly happy about it we understand the hospital game and to avoid litigation they don't want a case like Liam's hitting the street only to have some sort of reaction. So it was hard for us both to believe that we may get to go home so soon after the procedure even though we were sure that A.) Liam can handle his sedation (he always has) and that B.) We know more about his care than anyone, and would be better suited to aide in his recovery than a nurse who has never met him.

The procedure went well. Mom went with him into the O.R. and stayed until he was out cold. We hadn't even finished our first of many coffees (waking at 5:30am is too early for me and I don't like it) when the good doctor found us to report on how everything went. She has to analyze some data and so what she told us today was only preliminary but it was pretty much what we expected to hear. Liam's eyesight is severely compromised due to Retinopothy of Prematurity which makes this whole process a bit strange. His retinas are so damaged due to other reasons that even the eye Dr. herself told us she will probably be unable to distinguish any damage due to the drugs. But she saw some good functional retina in there and wasn't overly concerned. Any sight at all is good enough for us at this point. We did get a prescription for glasses to help Liam with near-sightedness though so I would expect that the internet will crash under the cuteness of the impending pictures of Liam with glasses and his little faux-hawk. Back up your data folks, you've been warned.

The post-op nurse was great and quickly set our mind at ease that we would be packing him into the car really soon. Kid was still dressed! They didn't need to put a johnny on him since the process was non-invasive. The sedation was simply to keep him from moving while they examine the eye. Which is why we were so confused that we had to stay overnight anyway. We are well aware that there are risks involved anytime you go under anesthesia and the hospital needs to cover its ass from being sued but the initial plan seemed overly cautious. We were relieved when Lisa said right off the bat that she knew we would know what he needs best, not every nurse gets that (its usually the ones with kids of their own).

Can we talk about this kid of mine for a second? Toughest person I have ever met. A trooper of the highest rank. This son of mine is a warrior. Chuck Norris cries at the idea of facing Liam in a toughness competition. I am in awe of him.

He woke up quickly after, and though understandably groggy he was alert and back to baseline on all settings and vital signs. Lisa the nurse gave us the quick go ahead, so we changed his diaper and were out of the recovery room less than an hour after we entered it. Karin drove home and we sang along to the ipod (Weezer, Ben Folds, Regina Spektor) at the top of our lungs while Liam napped in the back seat. We have been elated and relaxed ever since. We were supposed to spend this 24 hour period watching cable and reading in an ICU room. Found time together as a family but now we get to do it at home! After we unpacked Liam and got all his equipment squared away I sent Karin upstairs for some sleep since neither of us have slept in the last couple of nights. I watched Coraline on HBO while Liam finished sleeping it off next to me on the couch. Karin came down after a few hours and we switched so I could get a bunch of sleep too. Most restful nap I've had in some time.

We spent the evening watching TV and talking and I wrote this blog post. Liam spent some time doing excercises in his stander and playing with the two of us before we treated ourselves to some pizza.

A long day, but in total a day that can be marked as a total win. Its midnight now and Liam is back to sleep. Karin as snoozing upstairs and I am setting up a Futurama marathon on the netflix to fall asleep to on the couch. Good night all.

Edward and Jacob are no match for him.

2010-07-20T01:23:00.000-04:00

Sleeping is no mean art: for its sake one must stay awake all day. ~Friedrich Nietzsche

Nothing in this world can calm me like watching Liam sleep. It is a beautiful thing. Lately though, we've been seeing too much sleep in the day and not nearly enough in the night. The past two nights Liam has gone to sleep at 6:30 in the morning. He sleeps in the morning and again in the afternoon but refuses to sleep between midnight and 6am. Now before I get emails of tips and tricks let me assure you that we have tried it. What can I say? He likes the nightlife, he likes to boogie.

Part of it may be that he's teething. Incisors too. The top two have poked through those gums in the past two days. It occurs to me now that while his fangs are growing in he has been unable to sleep during the night. He does brood most of the time and nearly every lady he meets ends up falling for him. Thank god I haven't seen him sparkle yet. The world isn't ready for Team Liam.

Our new daytime nurse is great. A bit older than our other nurses she has that crazy, fun, aunt feel about her. She's loud and she's funny and she is wonderful with Liam. She tries as hard as she can to keep him awake for her shift so that he will turn this thing around but Liam refuses to co-operate. This morning as I rushed to get ready for work I saw her set Liam in his stander for his standing exercises with every loud blinky toy he owns on a tray in front of him. From barnyard noises to 'little brown jug' she had them all blaring their annoying best while holding his arms above his head with a mobility exercise. All the while Liam kept his eyes closed and snored. He can do that. He's been sleeping through physical therapy appointments for half his life.

The big Liam news last week though was that we came home on friday with our Passy Muir valve (also known as a speaking valve). Its a basic one way valve that prevents Liam from exhaling through his vent circuit. Air will now be forced out through the mouth and nose forcing him to relearn how to use his vocal chords and giving him a more robust swallow. This is a very big deal and as he tolerates its use more and more we will be able to feed him more solid foods. We have been working towards getting one for months and Liam has done so well with using it. We are so proud. Karin has been trying to capture some good audio of Liam flexing those pipes of his, I'll try and post here if she gets something good.

That's about all I've got for now. Its 1am and so Liam is just getting warmed up for playtime naturally and I've got some Bugs Bunny cartoons cued up on the netflix. That's all folks!

Oh! Except that I took this picture over the weekend and I like how it came out so I'd like you all to meet Gary the Garden Gnome who roams my side garden protecting my tomatoes and cucumbers from the neighborhood riff raff.

Life in Quarantine - The Fully Sick Rapper

2010-07-18T00:46:00.004-04:00

This guy Christiaan VanVuuren has been quarantined in an Australian hospital for 55 days due to a strain of TB. To pass the time he makes videos. Awesome stuff.

Karin and I went on our another date tonight. Second one in the last two years! Plan was a beer or two and then a movie. What actually happened was a few beers and then a few more beers; An awesome burger at the new fancy burger place Luxe ( they call themselves a Burger Bar, as if the combination of the two is new and exciting. A bit pretentious but a really good burger. I highly recommend the gorgonzola tator-tots as your side.); and a wonderful walk during a full waterfire. A wonderful evening and we both really needed it.

First some gibber jabber about TV and then a medical situation.

2010-07-17T03:23:00.000-04:00

I never watched Buffy. I've heard things and I suppose if I gave it a try I'd probably enjoy it, but for some reason I don't remember I didn't think it worth my time. I never really gave it much of a shot. I'd heard of Joss Whedon and how great a TV writer he was but never gave him much thought either. I might have to rethink my position on him and Buffy.

Faced with lots and lots of late night/early morning hours awake I pointed my Netflix streaming right at Firefly. To be honest I fell asleep during the first episode. Twice. But the next night I watched it straight through and got the second episode under my belt. Tonight I watched the third episode titled Bushwhacked. Awesome. I'm all of the sudden very much a fan of Mr. Whedon the third generation TV writer. (such a fan that I even went all the way to wikipedia to find out that little fact about him.) I was so oblivious to its initial TV run that even after however many years its been since it was cancelled I still have seen or read no spoilers. I'd heard about this quirky little sci-fi/western show that was trying hard to find steady audience but then it was gone. A blip on my pop-culture radar when the movie Serenity was released but no idea of its actual story. I did hear from a few friends that I'd like it though. They're right so far.

I might have to watch Buffy the Vampire Slayer. At this point I've got no reason not to. There are franchises that for some reason I haven;t been able to bring myself to get involved i.

*****We interrupt this blog post for a medical emergency******
I wish I was joking.

Funny story folks. As I was typing the little nonsense above, a nasty little mucous plug made its way into Liam's trach and plugged it up enough that suctioning it out with a catheter wasn't able to fix it. Emergency Trach Change Time -- Yay!! Nothing like having to spring into action with a steady hand and attention to the smallest sterile detail at 3:00am. Karin got it especially bad in that she was upstairs in a dead sleep. At least I was awake. Being woken up to that situation is not fun by any means. She's amazing by the way. She jumped into action with a word and within minutes our little blue guy was a little pink faced guy giving us dirty looks and wondering why his mean parents woke him up to jostle him around so much. My little warrior is pretty unfazed by these things; here we are less than twenty minutes later and he's sleeping soundly next to me.

So now I want to relax. I don't feel much like typing away about a silly TV show anymore. I am a new fan of Firefly but let's face it -- I'm a much bigger fan of Liam.

New look, same excuses.

2010-07-11T01:19:00.000-04:00

Yep, time for a new layout. I'm not married to it though so it may change again soon. Feels kind of silly to take the time tinkering around with fonts and colors when I should just buckle down and write a proper blog post but I'm tired and cranky waah waah waah.

I have to work tomorrow and so I will retire without even making an attempt at a post. Liam just fell asleep and Karin is catching a few hours of sleep upstairs. The old homestead is quiet aside from the rhythmic rumble of the ventilator and the steady hum of the air conditioner. If you close your eyes its almost as hypnotic as listening to ocean waves or a babbling brook. My house is always filled with white noise.

Night all.

Bobby Mcferrin can control your voice too.

2010-07-08T16:10:00.002-04:00

Truly fascinating mind control by Bobby Mcferrin.

World Science Festival 2009: Bobby McFerrin Demonstrates the Power of the Pentatonic Scale from World Science Festival on Vimeo.

Always hoping the next leap, would be the leap home.

2010-07-08T01:38:00.004-04:00

Let's face it folks; in the battle over my late night hours sleep has been beating up on blogging for the last couple of months. While I don't see that changing much, I hope to be more productive here in the coming days. It will not be easy though. Add to the mix our recent return to Netflix and the fact that I can stream movies and TV to our Wii. How can I possibly be expected to blog when I can sit with Liam watching late night marathons of Doctor Who or even Quantum Leap? That's right folks, I said Quantum Leap. I'm watching some right now.

Liam is fantastic. He's getting bigger and bigger and achieving more and more with his PT, OT, and Speech Therapy. We've got a stander now to help him learn what it feels like to stand upright and has been doing very well tolerating it. He loves the fresh air and all three of us are enjoying his daily walks around the neighborhood.

Home nursing has gotten more complicated than it should be. While the actual care day to day has been better, the scheduling and bureaucracy of dealing with the nursing agency has gotten harder and harder. It is unfortunate that all of my family's plans are dependent on the scheduling prowess of a fairly rude administrative assistant. Even more unfortunate is that said assistant doesn't seem to understand that, even after repeatedly being told. After some angry yet professional and civil phone calls things have gotten better but I'm not ready to call it progress until they can sustain this level of care.

That said, we did manage to wrangle an evening of nursing help from someone we trust enough that Karin and I were able to go on a date! Dinner and a movie for the first time in close to two years. I'm pretty sure that the 4 and a half hours we were away was the longest that Liam has gone without one of us at his side since he left the NICU. It was great but we pushed the boundaries of Karin's tolerance for separation. We hadn't even placed our drink order when Karin informed me that we would not be ordering dessert. Toy Story 3 was fantastic of course, and yes, I cried at the end too.

That's all I've got for now. I've fended off sleep long enough and must surrender. Hope everyone had a great 4th and is enjoying their summer. Night all.

I've seen it work on other blogs.

2010-06-19T00:37:00.008-04:00

As it is now obvious that I can't be trusted to post here in a timely and consistent manner let's just see if I can't ram a few blog posts worth of stuff down your bloggy gullet.

Issue the First: The Celtics.

My reaction to the Boston Celtics' playoff run of which I watched nearly every game? . . . You're living in the past man, the Red Sox are only a game out of first place. Basketball season is sooo last night. (My post in which I respond to how wrong I was here to follow.)

If the side effects are my entertainment, count me in.

Now this one definitely deserves its own post and will get one soon.

I've been thinking a lot about the ipad lately and I think Liam needs one. The interface and its portability are perfect to be used in his occupational therapy and development. With Liam's poor vision, putting DVD's on our TV to entertain him is pointless. The ipad could be positioned close enough for him to really see helping both to entertain and teach him. But more than that I am interested to learn if there has been any research into therapeutic ways to teach developmentally disabled children with identifying shapes, numbers, letters and sounds in any new and interactive ways. We often use flash cards with Liam to track his vision and help him practice his small motor skills. I would expect that pressing and selecting objects and moving them around on-screen could be used in many more positions and placements for the child. Grasping and holding can tire Liam out quickly. Pointing, touching, and sliding may make for longer work and play sessions between rests while adding to and not replacing his arm and hand exercises.

I think it could also be used in aiding communication for children like Liam. Press this section of the screen to tell mommy your diaper needs changing press the green box to say 'I'm hungry'. Press the red section after a kiss to tell Mommy that you love her too! Think Stephen Hawking but simplified. Although he can make sounds vocally, Liam's diagnosis may prevent him from "speaking" to his mom and I. He can still communicate needs and wants. He can still appreciate cause and effect relationships and I'd like to see if the ipad interface could be customized in ways that flash cards and the big buttons and switches (which we currently use) can. As he grows older I think this could come in handy.

Does anyone (out of the 4 or 5 of you who read this blog) know of any research into this, or apps for the ipad that are designed for this? I plan on asking our occupational therapist and speech therapist (who handles all sorts of ways to communicate other than speech.) if they have seen anything of the sort.

This is not a veiled attempt at justifying the purchase of an ipad. As much as I would love to go and buy one, that is an expense far too great for our budget and I don't expect to have one for years. But I've been thinking about its educational potential for Liam's future and am curious to find out more. Karin and I have always held to the same mission of nearly all parents; to give Liam every opportunity and tool that we can to help him achieve his fullest potential. If the ipad figures into that I'd certainly like to know it.

I've had similar questions regarding the wii system but the remotes are far too heavy for Liam and he's still stuck on the easy level for Guitar Hero (gotta get the pinkie finger involved kid.)

Read, Read, Read

I started the year tearing through books. A clip of almost a book a week. I haven't read any fiction in a few months now and only recently figured out why. Ever have one of those errands that every night before you fall asleep you remember that you need to do but by morning its gone and another day goes by without it accomplished? Yeah, library books are like that for me. I think I am not reading because of my guilt about overdue library books. Tremendously overdue library books. I just forget to throw them in the car in the morning to make my way there, but every night I remember.

The worst part though isn't the impending fine as I intend to make full restitution. I fully support the Library and will love giving them a bit of money the worst part is that somewhere someone may be waiting to read Boneshaker by Cherie Priest. (read her blog here) and can't because I'm a big irresponsible jerk. The book is all kinds of awesome by the way which makes me feel even worse about the whole situation.

Speaking of Librarians....

Park the car over at Makeout Point.

Please support Denver band Makeout Point by checking out their website and hopefully buying their record at itunes. The drummer (whose super hero disguise happens to be that of a librarian) is my only true lifelong friend. Some family you get to choose and even if I didn't love Patrick like a brother I would tell you to check out Makeout Point because they do in fact, rock the house.

Moving Day?

Contemplating a move from blogger to WordPress but not sure it would be to any great benefit unless I get my butt in gear and actually, you know, write a blog. If you've got any thoughts either way send them along.

Eating calories instead of burning them.

2010-06-15T13:51:00.003-04:00

A day off from work today. All day yesterday Karin and I talked about leaving the house at the same time together today. A real treat since it hasn't happened in months, the plan was taking off to hit the gym. We slept late since we've grown pretty comfortable with our new day nurse (just in time for the agency to cut back her hours of course.) and got all gussied up in our gym clothes and headed out. Somewhere along the line our plan changed though. Somewhere between getting dressed in our gym gear and actually arriving at the gym the plan changed into going out for breakfast. A meal in a restaurant. A waitress taking our order and bringing food to us at our table?! I think we both forgot how much fun that could be.

bad blogger.

2010-06-12T01:06:00.003-04:00

I guess all it takes to get me to blog again is a truly terrible day. Some increased seizure activity and random fever spikes had us spending most of the day in the Dr.'s office and a trip to the hospital for an x-ray. The x-ray was complete overkill if you ask Karin and I but we completely understand the doctor's reasoning for ordering one and his need to check it off the list. We know our boy and we know his breathing better than anything. If he were having respiratory symptoms we would see it in his ventilator readings and pulse oxymeter. We shot home as soon as the films were taken knowing that there would be no need to admit Liam. The doctor called three hours later to tell us what we already knew.

The kid caught a bug. He got sick. It happens. With all of the extra information we have about Liam's body it is difficult for us to accept that we can't point to a specific cause. Guess what? Kids get sick. Happens everyday, but when that kid is on a ventilator we have to worry about x-rays and white blood cell counts. Yippee.

He's doing much better now after an afternoon of sleep anyway. We've been taking his temperature every few hours to watch for another spike but things have been just fine since we returned home. He's definitely uncomfortable and possibly in pain. I can tell because his heart rate is a bit elevated but it's nothing we can't deal with at home. The pain and fevers can both raise the likelihood of seizures though so we watch, and we hope he gets the rest he needs to fight off whatever bug he's picked up.

It's a shame I waited so long to blog. We have enjoyed a bunch of awesome milestones and events including Liam's first backyard cookout here at the house to celebrate a special mother's day and the anniversary of his initial trip home from the Nicu. We had a great time at a special private event at the local zoo for kids who have spent significant time in the Children's Hospital; and have made large steps forward in his therapy and development. All of these stories would have made wonderful blog posts (and maybe still will someday) but I get tired at night. Having an 18 month old at home is hard, ask any parent, and sometimes I have to decide between sleep and blogging. I used to think I could do both, I'm getting wiser in my old age.

G'night all.

Saying hi to swingsets.

2010-05-25T01:00:00.007-04:00

Karin is asleep upstairs, Liam is asleep in his crib next to me and I am going to post quickly before trying to get some sleep myself.

Haven't put any photos up in a while. Let's fix that shall we,

Want to see the Greatest Picture Ever? I thought so...

That's the greeting I got from my boy when I met him and his mother at the Dr.'s office on friday afternoon. Most of his Doc's have offices within a couple hundred yards of my office and so Karin packed him up and brought him all by herself and I met them once they got there. Karin snapped this with her phone when I sat down with Liam in the waiting room and said hi. Look at that grin. The picture, of course, has been on my office computer screen ever since.

Over the weekend we also got a chance to go to a special park that featured swings and playground equipment for kids of all ages and disabilities. The event was put on for families of the VIP program (Ventilator Integration Program) and was a chance for us to hang out and meet families going through very similar situations. We were able to finally meet in person a family that we have only known through facebook and text messages who have very similar circumstances. They're good people, and I'm happy to have friends who understand what we're going through right now.

Liam got to ride on a swing for the first time! It was a neat swing that held his whole stroller on a platform chained to the swingset. His mother and I took turns pushing while the other snapped photos. He seemed to enjoy the breeze while swinging through the air. Awesome stuff indeed.

I'm tired now and need to get some sleep so I'll put one more up and bid you all a good night. Sleep tight.

Bittersweet

2010-05-20T02:28:00.002-04:00

An employee surprised me the other day by playing this song in the kitchen the other day. I'm sure I haven't heard it in years and I forgot how much I love this tune. Its been running through my head ever since. Because of that I put it here for you now. Enjoy.

The Back 40.

2010-05-16T01:23:00.002-04:00

Last year I planted my first garden. I thought that was pretty neat. I had big plans on eating smarter again after spending 5 months eating almost nothing but hospital cafeteria food. So in the middle of June with visions of august meals, I planted three types of tomatoes, green beans, eggplant, cucumbers and summer squash. I didn't know at the time that I would go on to spend the next 4 months eating nothing but a different hospital cafeteria's food. Bummer.

All of the plants grew surprisingly well given my level of neglect. Had I watered them during the dryer weeks of the season we would have had fresh ingredients for a majority of the summer and late into the fall. Every plant grew large and fruitful but was never harvested. Alas, I let a lot of crops die on the vine but all of that dead fruit helped to fertilize the soil in that area. This year I am eagerly anticipating the growing season. I've done more yard work this spring already than I did last year and hope to continue that all year. I can't wait to get the garden really going again. Next weekend the plan is to move my compost pile and turn the garden's soil. Hopefully I'll have enough of my own compost to hit all the areas but I'll probably need to hit Benny's for some fertilizer.

My father has a bunch of tomato plants for me that he grew from seed in the greenhouse. He also has some spinach plants and I'll steal a few of those as well since spinach currently is the base of my lunch every single day at work. I'll definitely go with green beans again since I love eating them and there were tons of them last year. But after that I am not sure what else I'll be growing. I'm open to suggestions. I also have to find a place for my two gooseberry bushes. When I was a kid I used to make myself sick eating gooseberries in my nan's yard and now I have a few bushes of my own from her yard. They're still in buckets as we speak though and I'm not sure where I want them yet. Already got fruit on them though so that's cool. Gooseberries were the crazy special ingredient on a recent episode on Chopped - also cool.

In the year before Karin was pregnant with Liam, she and I had each lost 50 pounds by exercising daily and eating all the right things (fresh, fresh, fresh and unprocessed) while staying away from all the wrong things (fast, processed foods). Then we had a child; and stress dictated diet more than anything else. We're just now getting back on track. We both have been getting to the gym 5 days a week and the snacks in the house right now are limited to fresh fruit and greek yogurt. While last year I was glad I planted even if I didn't end up harvesting, this year I am excited to create meals with my own produce. Right from my own garden.

When you believe in things that you don't understand,Then you suffer.

2010-05-10T23:04:00.004-04:00

Growing up I don't ever remember being a superstitious person. I guess my only superstitions have come from times of great stress.

I won't ever shave or cut my hair when Liam is in the hospital. If the itchiness gets really bad I will shave just where my shirt collar rubs my neck but no shaving of my face. You should have seen me the day we left the Nicu after 153 days. Grizzly Adams had nothing on me.

I only cut my hospital bracelets on discharge day. When you're seen in the E.R. they give you a bracelet and then you get another when you are admitted. Once admitted the ER bracelet can be removed but I never do. On long hospital stays bracelets can get kind of gross. Nicu bracelets used to have folded pieces of paper under clear plastic. The paper would start to stink after it got wet from hand washing. Nurses would constantly be asking to give me a new one but I always refused. Sure, bracelets can wear out and snap off, its inevitable on the long stays, but I only cut off hospital bands on discharge day.

I guess I only mention this now because last night I got to cut off a few bands and this morning I finally got to shave. Liam spent most of the last week in the Intensive Care Unit at Hasbro Children's Hospital. He's home now. It was a long, trying week and I am glad its over.

Mother's Day this year was supposed to be a very big deal because it was to be the first Mother's Day that Karin didn't spend in a hospital but unfortunately that didn't end up being the case. Liam's gift to his Mom though was getting well enough that she got a few hours at home with him in the evening of Mother's Day. The Kid always gets us the best gifts.

He needed to go into the hospital because of some GI problems. He's fine now and I'll spare you the boring details and medical talk.

I will tell you though that the universe works in very mysterious ways. Almost immediately after being admitted to The Unit (its what patients and employees call the ICU) we were approached by a few nurses and the unit's social worker and asked if we wouldn't mind talking with a few different families whose children either just got trachs or were about to get trachs. When Karin and I grappled with the difficult decision to put in Liam's trach it was conversations with another family who had been through it that got us through such a difficult time. Liam must have known that there were families in the hospital that needed our help. In only a few days we became very close with a few families. I am sure that we will see each other again as we already have plans to get together outside of the hospital. Being through what we have been through has given our families a common bond that few people in this world can relate to. You can never truly understand what its like unless you've lived it and so talking with anyone else in a similar situation is a blessing.

I do believe that we were sent to the hospital at this particular time to help these families but I'm not sure that the families know how much they helped us. Talking with them gave us a purpose while in the hospital. A mission. A distraction. If nothing else it made the time go by quicker and before we knew it, it was time to go home. Thank you Morgan's family and Becky's family. We will always remember how our families met. Don't ever forget that as much as it may seem like it sometimes, you are not alone.

It will take a few days for life to get back to normal. All three of us are exhausted and the house is a complete mess. Liam is sleeping now and Karin is upstairs doing the same. As soon as I publish this post I will stretch out on the couch next to Liam's crib and try to be the third. It shouldn't be a problem I'm not superstitious about sleep.

The March

2010-04-27T01:54:00.005-04:00

The March for Babies was yesterday morning. It was cold and rainy but still fun. Liam was a trooper and made it through the whole walk. By the end he was by far the driest and warmest of us all.

I wanted to spend the walk thinking about what I would write here and taking lots of pictures but instead I was only focused on trying to keep Liam warm and dry. A distant second was trying to keep myself warm and dry.

Team Liam was the most successful of all the "family" teams. We raised over $5000. and I would like to mention that the top three fundraisers on the team were my Aunt Kelly, Karin's Mom and my Mom who each raised over a thousand dollars. Amazing work and I am so proud of them all.

I'm sorry folks but I'm exhausted. I wanted to have a great long post about the walk and what it means to us but I don't have the energy tonight. I just wanted to post a few pics and make sure to mention how proud I am of our team. I've done that and now its time to get some sleep.

Night all.

Pre-Walk Walk

2010-04-25T00:14:00.012-04:00

March of Dimes sponsored March for Babies day really is like a holiday for most families touched by premature birth. We have been waiting to take Liam on this walk for a year. Last year we finished walking and went straight back to the NICU to tell Liam all about it. This year we get to show him.

In the morning we prepared the house for the walk and in the afternoon we took a practice lap. We haven't had many chances to put the new stroller through its paces and so we took advantage of the nice weather and headed out. Good thing too because we did find a few things we can do differently tomorrow to make things easier.

Afterward we spent a good while just hanging out in the yard and waiting for Liam's Aunt Kathy and cousin Aiden to come over and for his Grammy and Opa to arrive from New Jersey. I got to take a bunch of photos before and after our stroll.

It makes me a little sad to see how big he looks in this photo. My big boy is growing up way too fast.

Kid knows how to wear a hat though.

Dad! Don't make me laugh so hard!

(or yawn, it could be a yawn)

I'm going with laugh though.

My bubbles.

He seemed to really love hanging out outside for a change.

It may be so 2009, but no one rocks the faux hawk quite as cool as Liam. This shot is Mom's handiwork.

Liam tries to play it cool even though he's psyched about the awesome paper plate maraca that his cousin made for him today at the zoo.

Coooool.

We finished the day with an incredibly delicious meal prepared by Karin's mom and settled in early in anticipation of tomorrow's festivities. Thank you to all who helped out here today and I'm excited to see everyone involved with the walk tomorrow.

Go Team Liam!

Forward March

2010-04-24T14:56:00.004-04:00

Lots to do, lots to do.

March of Dimes walk is tomorrow and Team Liam is roaring to go. The cookout here at the house after the walk has the whole family running around like crazy. Except for Liam. He's busy napping.

Lawn has been mowed, floors have been swept and mopped. Baked goods are in the oven and all seating areas are cleared for visitors who are coming in from all over.

All that's left to do now is show you a video of Travis Pastrana doing a high speed and altitude back flip on a big wheel. A pink big wheel. Oh c'mon, you know you want to see it.

Play Ball II

2010-04-22T10:15:00.003-04:00

Liam slept well last night which has left me chipper and energetic this morning. Regular readers of the Pressure know that I usually only post in the wee small hours of the morning; today I'm trying to squeeze out a post before work.

Red Sox on a streak.

The Sox have actually put together a couple of wins in a row. No small feat for a team that seems allergic to run scoring. I know its early and these things have a way of working themselves out over the course of a long season but pitching and defense are not the strategy you need in the american league east. Other divisions, you may be able to get yourself enough 3-2 wins but when you have to face the Yanks and the Rays 18 times a piece you need to be able to score. I, and many of the long time Red Sox fans I work with, have already allowed ourselves to fall back into old ways. Pre 04 days. There's always next year. I'm surprised at how easy that attitude came back. Its an attitude that long time Red Sox fans feel comfortable with. We've got our swagger back. Helps to weed out the fair weather fans (pink hats) anyway.

One employee of mine though is upset, very upset. Every day he comes to work angry at how poorly the Red Sox have looked and I will say it does remind me of me back in the day but his anger is different. It took me a while to figure it out but since he was only 15 years old when the Red Sox won the world series in 04. He expects to win. He expects the playoffs every year. He doesn't remember the early 90's. He doesn't remember '86. He doesn't yet know what it feels like to have this team really break your heart. Over and over again. He came to work after the sox's 5th straight loss and stood in my office and shouted "Now I know what its like to be a Kansas City Royals Fan!" I turned to face him and calmly explained. "No, now you know how it feels to be a Red Sox fan young-in." Poor kid. I was only 9 when they first broke my heart. I think its easier when it happens that young. I got used to it.

Let's be clear, I hope I'm wrong. I hope they turn it around and we make the playoffs. I will be pulling for them to do so every day. I will still watch on the edge of my seat and will still yell at my TV during games but I'm just mentally prepared for it not to happen. For them to tease me into thinking its possible right before the yearly June swoon. Our division is just too tough and I don't think that good pitching and adequate defense is going to be enough. Unless they make a big move before the deadline (a la trading Nomar in 04) it's going to be a long season.

But remember the mantra of all long time Red Sox fans, there's always next year!

New Stroller Weekend

2010-04-20T00:20:00.007-04:00

I love this picture. Skipping mine of course, we've got 4 generations of Olson's up in here! Nan is wonderful with Liam and he has always loved hanging out with her. You should have seen her excitement when we surprised her with a visit.

It was New Stroller Weekend this weekend. Liam's new custom made stroller was delivered and assembled by our mobility specialist on friday afternoon. It took 3 hours of tinkering for it to be built and sized just for Liam and when I asked how I could learn to adjust the parts for his growth I was shot down. Growth adjustments will be handled by the company who will come out periodically to make sure he fits just right. This thing truly is the Cadillac of strollers.

We have been waiting close to 3 months for this unit to be made. Measurements of all of Liam's limbs were taken early in the year and all of his equipment has a place. Gone are the days of lugging large heavy bags and equipment for a simple stroll around the block. This thing is freaking awesome. Our old store bought stroller while great for any other family just wasn't a safe option for us. With the ventilator hanging on the back of it we couldn't ever let it go for fear of the whole thing tipping over due to all the weight. The large solid wheels make this thing off-road ready. Next weekend is the March of Dimes March for Babies (click the link on the right to donate in Team Liam's name) through Colt State Park. That park doesn't even know what coming. We are gonna walk all over that place!

It wasn't until last night, three days after we got the thing that we realized its only drawback. It doesn't fit in our car. It collapses a bit to take up less room but not nearly enough to fit into the trunk of a Honda Civic that's for sure. It took a few tries and a lot of the type of thinking I haven't done since geometry class but if we take the seat part off and pop the wheels off the base unit we can fold it enough to fit in the front passenger seat of the car. Its a temporary solution as it is obvious to us now that our only real option for the future is to find a minivan or SUV of some kind. If anyone knows where we can pick up one of those for under say a hundred bucks let me know. For now, Karin will ride in the back with The Kid because his stroller's ridin shotgun.

The Boy loves his Grampa too and he got to see the pottery yesterday while on our walk. The hat he's wearing was made by my Mom for him. With his old stroller Liam was always so sunken into the seat that interacting with him was difficult, not the case with the new ride and we have taken full advantage of that. In fact while we were on our walk whoever wasn't pushing the stroller was able to walk by his side holding his hand. There is nothing like walking down the road with Liam's hand in mine. With the new ride and the warm weather, that will be happening all the time.

Play Ball

2010-04-18T00:42:00.005-04:00

Today was the first game of the 2010 season for the Providence Grays Vintage Base Ball Club. A team of which I have been a member since 2007. This is the 13th season for the club and we are the longest continuously running team in all of New England. We play according to the rules and customs of Base Ball as it was played in 1884. (although today we played 1886 ball which our opponent focuses their play.) That means no gloves, a pitcher 10 feet closer to the plate, 6 balls and 3 strike count where foul balls are not strikes and when hit by a pitch a base is not awarded. We play in period accurate replica uniforms made of the same materials used in the 1880's. 100% wool uniforms are mighty comfortable for a doubleheader in august let me tell you. Dig around the website and you'll find more details on the rules and the team's history. I guess you could boil it all down to a cross between a sporting event and civil war re-enactment. We're baseball dorks with a death wish.

We lost 15-10 in an ugly game on a muddy, wet field but no one got hurt and that is always cause for a celebration. I broke a few bones in my hand a couple seasons ago catching a fly ball, and pretty much everyone else on the team has at least one similar story while some have sustained far, far worse. Of course I would have liked to win but win, lose or draw it was still a day playing Base Ball (yes, in those days it was spelled as two words) and that's pretty much better than any other day.

I didn't play at all last year. With Liam spending the summer in the hospital, fun and games in the sun wasn't ever an option; so I really have been looking forward to this game for close to 2 years. I played well I guess. Not well in your standard definition of playing baseball well, but well enough for my limited co-ordination and athletic ability. I am a very limited fielder and had 2 errors today playing second base, which isn't bad in our gloveless game where single game team errors can easily run into the double digits, but they came with only 5 balls hit towards me all day. I had a great day at the plate though where I went 2 for 5 with a fielder's choice and a long flyball. I was getting good wood on the ball, but my baserunning definitely left something to be desired. Unaware of where the defense was playing I ran into a boneheaded force play that I should have made with ease. I'm slow enough as it ,I need to make sure I'm using my head out there. Overall I can't complain though as it was my first game action in a few years.

The plan was of course for Liam to come out to the park to see his daddy play but since it was a miserable cold and drizzly day he and his mom stayed home and hung out. I can't wait to see him in the stands watching me run around like an idiot out there. Next month we'll be playing at McCoy Stadium the home of the Pawtucket Red Sox, Boston's AAA farm team. I've played there before and to take that field after meeting ball players that I have seen on TV (John Lester a few years ago and Clay Buchholtz the next) was truly amazing. Having my wife and parents watch from those stands was quite a thrill. I can't wait for it to be my son up there.

Gold Star Day.

2010-04-13T00:48:00.008-04:00

I have to admit publicly that I spend most days at work looking forward to my next day off. I hardly think I'm alone in this. So when the day off ends up being both productive and fun its an epic win for the Olson clan. I can happily say that today was one of those days. Which is fun to type since most days of the week I find myself muttering 'oh, I guess its gonna be one of those days.'

I spent a large chunk of the day in my basement silkscreening Team Liam T-shirts for the March of Dimes walk which is at the end of the month. Mel, a friend of ours brought the equipment and the know how. She draw up an excellent logo for the shirts a few weeks ago and has donated a lot of her time and ability to the project. Karin and I appreciate it more than she probably knows.

The shirts came together wonderfully. A happy accident with color choice drove us in a direction I probably wouldn't have picked in the planning stages and actually gave us a better product; I am so happy with how these came out. Our original logo color just didn't POP against the bold material color we chose. Some quick improvising and paint mixing on Mel's part had us up and running quickly and after a few test runs we were banging them out easily. I was on board and hanger duty as I prepped the new shirts for screening and hung those freshly screened. I would later spend the early evening ironing all of the shirts to set the paint so that it won't wash out.

We could have uploaded the logo Mel designed for us to some website like Cafe Press and had nice, pretty, perfectly centered and printed shirts. Normal shirts. But nothing in Liam's life has led us in a normal direction and we've always ended up better for it. Each shirts is unique. Sure a few ended up perfectly centered and perfectly printed; but they're snowflakes. Some fade in at the top, a few feature a small line through the logo due to a crease in the board, vintage looks abound on the first couple of shirts that were printed just a slight shade less as we learned how much the material soaked up ink, a wrinkle here a tiny smudge there make them all perfect. I love them all and only wish we had made a whole lot more than we did. It makes me happy that instead of signing for a delivery we rolled up our sleeves and made something for the team.

I won't post the logo here yet. I'm saving that until after the walk. I'm sure that the internets will be flooded with Team Liam shirts by then since we are currently leading all RI teams for donations no thanks to me. I need to greatly increase my efforts but since I work in a facility with March of Dimes staff my market is already flooded. I can't ask my family because they are all already team members. I've got some ideas though and hope to make a dent this weekend. My family and especially Liam's 2 grandmothers have been working their butts off for this wonderful event and charity and I'm so proud of the whole team. Even if you can't give please click the link to the right to learn more about the March of Dimes mission.

During all of this fun Liam had an OT appointment and again gets a figurative Gold Star. He was tracking objects and hitting switches like a big boy. Karin learned a whole bunch more stretches and exercises to teach me and we set our new short term goals for his progress. Before he could fall asleep on the floor like usually does after PT or OT we scooped him into the stroller to enjoy the rest of the afternoon outside in the sunshine.

We took a leisurely stroll through the neighborhood taking streets we usually never turn down and enjoying the warm springtime breeze. A breeze not strong enough to keep Liam awake as he fell asleep within two blocks of the house. We ended up at the Dairy-Bee, the neighborhood ice cream shop of my youth, for an afternoon ice cream cone. Does a day get any better than that?

A funny thing happened on the walk as the three of us came to a busy intersection down the street from the house. "The Square" is one of those normal small town traffic light intersection but one that is fairly easy to cross on foot. The traffic lights allow for plenty of time to cross and the Nuttin buttons on the Don't Walk signs actually produce results most of the time. We approached the intersection just as the light changed and were ready to wait for the cycle to run through when a police cruiser in line to pass in front of us stopped midway through and put on his lights while turning to block the oncoming lane which contained 5 or 6 cars about to reach the light. And then he waved us through. He waved us through. A whole lot of fanfare for something that would have happened in a few seconds had we waited for the light to change. I thanked the cop and we pushed across the street as the oncoming cars wondered what the fuss was about. I have to say I wondered what the fuss was about. I mean, don't get me wrong it was a cool gesture and I do appreciate cops (or people in general) to do nice things for people and this was definitely a nice thing but the light would have changed eventually. It just seemed so weird, but it was kind of cool too.

Liam woke up by the time we got home and stayed awake for most of the day. Since he didn't fall asleep until after 9pm I'm hoping he stays asleep most of the night for us. With the nursing situation as it is our routine for the gym and other errands has been completely thrown out of whack. We'll get back to it. As much as we like our routine Liam has taught us not to rely on them. Too bad too because I could get used to days like today.

Long week.

2010-04-11T00:40:00.005-04:00

Look at that face would you? The kid is adorable. Now if he would just fall asleep. As it gets later and later I am realizing that getting up for base ball practice before work tomorrow is becoming less and less likely. A bummer too since it's the last practice before games start next week.

Its been a long week. A very good week, but long. Spending my day off from work in the hospital last tuesday has really drained me and since I'm working the weekend I haven't gotten a chance to get caught up on any rest. On my off weekends I can usually squeeze in a nap with Liam each day but I've just been too busy lately. The nursing situation at home could be described as sporadic at best but hopefully that will change in the next two weeks. We'll be training a new nurse this week and the whole house is hoping that it's a nice fit.

I am still loving Liam's new trach size and the fact that he can use his voice again. Every night I try and get Liam to say Dada, but I'm fairly certain that he'll say Mama first (as he should.)

I know that I have been slacking on the blog lately. What started as an exercise in discipline of writing every day has become 2 or 3 times a week at most and that is simply not enough. I have been writing but not on the blog. I'll fill you in on the details of my other writing project someday but its not ready to be talked about here yet.

When Liam falls into a deep sleep the ventilator sounds become soothing like a white noise machine. The rhythm of 26 breaths a minute is ingrained in the conscious of everyone in the house and when he rides that vent it can become downright hypnotic. I'm going to count down from 5 and when I get to 1 I'll fall into a deep sleep. 5...4....3....2.......zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

In the Hospital.

2010-04-06T15:01:00.005-04:00

I don't like getting out of bed in the morning before the sun comes up. I like it even less when I have to get up that early to take Liam to the hospital operating room for some tests. Liam needed to have a bronch which is a routine (about every 6 months) test for kids on vents as well as an ABR which is a hearing test that is done under anesthesia. Neither test is really that risky but let's face it, being put under anesthesia always has its risks. I'm not a fan of Liam going to the O.R.

The bronch results were normal. We weren't expecting anything different. It's something that we'll do a couple of times a year and the changes we are looking for usually take years and years to happen so no big thing there. We did get Liam sized for a new trach which doesn't fit quite the same as his old one. He's got a leak now. A bit of air passes by the cuff of his trach and he can now use his vocal chords, mouth and nose in ways that he hasn't used them in almost a year. As I type this post both Liam and his Mom are snoring on the couch across the room from me. With Liam the snoring is new and adorable, with Karin its never happened and if you ask I'll tell you that she never snores. (wink, wink)

The hearing test was normal. He fell in the normal range for all categories for his age group and we no longer have to worry about hearing tests or hearing aides. The interference noise from Liam's ventilator makes most screening equipment useless for Liam and observational tests are tenuous even for healthy infants so having hard numbers on the subject is a good thing.

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I posted a few pictures of the morning's events on my Posterous page. You can even see his annoyed, "why did you get me out of my crib at 5:30am" face

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Liam is kind of a rock star at the local children's hospital. It was nice to see a few of the people who had helped us so much when we were there for 109 days. Not nice enough to want to stay even a second longer in recovery than we had to, but nice all the same.

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More than one person commented on how pleasant the alarm chime was on his pulse-oxymeter, and it is pleasant, the first 3 or 4 million times you hear it.

It has sprung all right.

2010-04-03T14:26:00.003-04:00

I stopped regularly posting to or reading my Twitter account once I started the blog but ti seems that the last few weeks of blog posts could easily be boiled down to 140 characters. THis will be no exception.

A night nurse 2 nights in a row! I am almost drunk on two full nights of sleep.

An absolutely glorious day outside today. Glorious truly is the only word that could do today's weather justice. I spent the morning at Base Ball practice and will spend the rest of the day showing Liam what springtime is all about since he spent all of last Spring in the hospital.

Hope you all enjoy the weekend as much as I already am.

2010-04-01T23:21:00.002-04:00

It was an extremely long day at work today. Not bad necessarily just long. Our night nurse is here for the first time in close to a week so I am going to sleep in the same bed as my wife tonight which also has not happened in close to a week. It has been a long time since I have put together a proper blog post but I figured I would at least throw a picture of the boy up here.

Good night folks.

2010-04-01T01:51:00.000-04:00

For my wife who no matter how long she lives in RI will always be my Jersey Girl.

Same old song and dance.

2010-03-30T23:10:00.002-04:00

A quick wave hello to remind you all that I'm still here and let any out of town friends know that we weren't swept away with the worst flooding Rhode Island has seen in 100 years.

Liam is doing very well and has bounced back in a big way from his little belly issue last friday. He rode out the storm with his mommy while dad worked and worried about being stuck at work overnight. I'm considered part of "essential personnel" at the hospital and had my attention focused on whether or not the Governor was going to declare a state of emergency which would have trapped me at work indefinitely. Luckily he didn't. I'm home now. The flooding is very serious in many parts of the state but we are surprisingly dry.

The lack of nursing help is really starting to take its toll on us. Sleep comes in short bursts for both Karin and I and we are really starting to miss it. I'm going to try and grab some winks right now as a matter of fact. So, yes, I'm still here. I'm still interested in blogging, and writing, I'm just more interested in getting some rest right now.

Crazy Week, Boring Blog Post.

2010-03-26T23:43:00.005-04:00

Today was one of those stressful days. Where we walk that line of whether or not we will be hanging out in the hospital by day's end. I'm happy to report that I am currently typing this from my recliner while Liam farts away in his crib next to me. At Home. After three days without pooping (I know, I know more poop talk.) Liam was feeling bloated and uncomfortable all day. It's a slippery slope between a few days without a B.M. and not tolerating feeds and more importantly meds. With a bowel resection surgery in his history we would need an x-ray to check and an IV to administer both his anti-siezure meds and, ironically, his motility drugs. We've got an awful lot of medical equipment in my house but IV equipment and an x-ray machine aren't part of it all.

Still camping out in the woods and not out of them yet Liam did poop for us many times today which has helped but things like this can be tenuous until he is back to his normal self. Prune juice is helping move him along but the resulting gas can further distend his belly and cause unneeded pressure on his lungs. A ball of wax I would rather not mess with right now. He seems to have turned a corner over all though and we are optimistic tomorrow tomorrow will be a better day than today.

Instead of just raining, this came in the middle of a downpour. On Wednesday our little life of routine was thrown a curve when Karin and I came to the decision that our daytime nurse just wasn't the right fit for Liam and our family and asked the nursing company to assign someone new to the case. This is something that is very common in the homes of home-nursing patients but the first time we've made such a request. I have fired people in my various day-job positions (though not my current one even though I've been there almost 5 years.) but this was different. While this is most definitely a Job to them, we are in essence "firing" them from our lives. We made the request on her day off and her supervisor was accepting and understanding of our decision (as if she had a choice in the matter) and would assign her to a new case immediately.

Except that due to a communication slip our nurse was not informed of the change and both she, and our new nurse arrived the next morning for duty an hour before the nursing company office opened. I would have to give her the bad news rather than her boss doing it. I should mention that I am not saying that she is being fired from her Job. Just from this job. She will be re-assigned somewhere, as she should be but it may effect the amount of hours in her paycheck for the next few weeks. I calmly sat her down at my kitchen table and professionally listed the specific instances that bothered us and caused the change and told her that we have asked that she not return to our case. She bid us good luck (without even asking to say goodbye to Liam, the patient, of 6 months.) and left.

I am still reeling from it all honestly. This woman spent 7 hours a day, four days a week, in my home helping take care of my child for 6 months. I don't particularly mind being the "bad guy" and disagreeing or being frank to anyone when it comes to taking care of my boy, actually I'm pretty good at it, but when the job in your home the level of familiarity can make it difficult to not fear hurting some one's feelings. By the job's very nature the lines of personal/professional are blurry. How can they not be when this woman has seen me in my pajamas? ( one of the many annoyances of home nursing is not being able to wander half-asleep to the bathroom in my underwear. Pajamas no matter the season - Booo!) Nonetheless, the change was necessary and once the next month of transition is over we can bounce back into some sort of routine.

For the next few weeks the company will try and hire a new nurse with trach and vent training to take our case while we take care of Liam ourselves. Karin and I are excited at the time we will get to spend alone as a family. While the level of Liam's medical needs make nursing care a long term necessity for the benefit of the entire family we are fully capable of going it alone in the daytime for a few weeks. Today alone proved we (admittedly this we is like 80% Karin 20% me, as I spend the days at work) have the skills to take care of him. We will still have our night nurse three nights a week so we'll be able to get a slightly better night's sleep almost every other night.

Tonight there's no nurse but that's ok. Karin is sleeping after a long and tiring stressful day and I am decompressing with the boy after a long tiring day at work. Hopefully Liam tolerates his overnight feed fine and we move on to the next thing. Otherwise we muscle through another day of worrying about going to the hospital. Either way, all three of us will get through it.

Done

2010-03-21T23:21:00.002-04:00

It took far too long to get done. I was for health care reform when the Clinton's proposed it in 1994 and now that the terms "pre-existing conditions" and "lifetime caps" mean so much to my life I am rabidly in support of health care reform. This bill may not be perfect, in fact I don't think that it is nearly progressive enough, but its a start.

I spent the day at work checking the whip counts like I was checking a sports score. Tonight I made Karin put C-Span on so that I could watch the 216th vote be cast. A few months ago I didn't think I'd be able to say this but tonight I am proud that I am a democrat and even prouder that I am an American.

Oh, The Joys.

2010-03-18T00:44:00.003-04:00

Disclaimer: I feel it only fair to warn you that this post may seem to stink to some but a home with a baby is a home that talks about poop. It can get graphic. You've been warned. While I'm here adding a disclaimer after writing the post, can you tell I read a cool post about semi-colons? (hat tip to Cherie Priest, whose book, Boneshaker, I am currently reading.) It helped out when editing tonight.

What gets poop out of couch upholstery? No really, I'm asking; what gets POOP out of couch upholstery?

Liam didn't poop for the first 40 days of his life. We have had bowel movement issues since day one and ever since an eventual bowel obstruction leading to a resection surgery at about 6 months, we celebrate poop. We have prayed for poop and at times have literally danced upon its arrival. The usual first time parent attitude about how cute their baby's wittle poopie-woopies are lasted extra long for Karin and I but its pretty safe to say that we've seen the last of that attitude tonight. Did I mention that there's poop on my couch?

Liam had a doosy tonight. We are talking code red bio hazard, emergency cleanup mode doosy. Parents will know what I'm talking about when I say he had one right up the back. He was sitting up on the couch like a big boy all afternoon and by the time we realized he needed a change it was too late. Time to get the tub ready.

With the challenges that we have had and will continue to face, Karin and I celebrate the "normal" things. The universal moments that ALL parents face. These are the things that keep us grounded when we spend nights trying to sleep in hospital chairs and when we worry about battery back up power because breathing equals electricity in our world. This is just one of those things that I wish we missed out on though.

You know what I'm talking about parents. A real tag-team diaper change situation. All hands on deck; I actually had to have Karin take over so that I could change my clothes. To those of you who don't have any children this may sound pretty gross and hard to believe. It is gross, but believe me. Please believe me! You will understand someday. Oh the joys you'll understand.

I'm thinking about just burning the couch cover. Next time I'm going vinyl.

St. Patrick's Day

2010-03-17T12:30:00.003-04:00

Aack. So I take a few days off from blogging and now I have too much to report. The sun is shining and I am just chomping at the bit for Liam to finish his nap so that we can go outside and play. Initially I had a great plan involving kite flying planned for the afternoon (inspired by this thoughtful and fun blog post.) but failed to plan ahead and get the necessary equipment. Namely, the kite itself. I'd love to run out and buy one now but I promised Karin that she could nap while he napped so I don't want to bother her. Ah well, the warm weather is just starting and there will be other days for high flying fun. I suspect we'll go walking around the graveyard again as soon as Liam wakes up.

We all had a very nice weekend. On Saturday I was asked to take part in my cousin's Eagle Scout Court of Honor which made me very proud and gave me a chance to hang out with my dad for a few hours during the 2 hour drive out to Springfield. It's the farthest from Liam I have ever been since he was born. As we got about 45 minutes away, I started to get a very uneasy and unsettled feeling in the pit of my stomach. Even while I am at work I am only minutes away and can rush home to help in case of any emergency. Not really the case when you start getting further and further away. At about the hour and a half mark a realization washed over me that at that point no matter what happened Liam and his Mom would be on their own. No matter how serious, there was nothing that I would be able to do to help the situation. I usually get very frustrated when there is something that I can't help with. I'm a fixer. I need to be able to control the situation. Even when we had to call 911 to take Liam to the hospital last October I was telling each of the EMT's what to do and where to go, a situation I'm sure they appreciated by the eye rolling and attitude I received. There is only one other person on this earth who knows how to take care of any emergency with Liam. That is of course, his mom. Liam has seen dozens of doctors and easily more than a hundred different nurses in his short lifetime but unless we are talking about major surgery only is mom and I can take care of him. At the point of no return I realized that it was all up to Mom. She would have to do it without me, and somehow that calmed me. Since there was nothing I could do from so far away it freed me up to simply enjoy the afternoon. Had I been closer to home I would have been constantly thinking about rushing home to help out but in this case I could just enjoy the ceremony.

After about 4 hours though, that sense of calm wore off and it was time to get home as quick as I could. I missed him and being so far away started to again weigh me down. It can be frustrating that Karin and I cannot simply call over a babysitter and take off for a few hours together but I don't think either of us really want that to happen. The only way that either of us can be comfortable leaving him at all is when we know that the other is with him. While I did have a fun afternoon that day I think I'll be staying somewhat closer to Liam for the foreseeable future.

On Sunday Karin's parents came up from NJ for a visit and we all had a great day of watching college basketball while Grammy and Opa took turns holding Liam. Hopefully sometime over the summer Karin and I will be able to work out some kind of arrangement with our oxygen supplier to make a short visit down to New Jersey so that Liam can meet his cousin and visit his grandparent's house. We'll see.

Monday was marked by an appointment with Liam's Neurologist that went exceptionally well. Karin and I are unbelievably lucky that we have been able to surround Liam with some of the best and brightest specialists in the northeast. Dr. G. is a leader in his field with a specialty in the same brain disorder that Liam is diagnosed with. Liam did very well at the appointment behaving very well for his neurological exam and showing Dr. G. how much progress he has made. After the appointment was over Liam and Karin walked over to my office to meet some of my staff and co-workers who have waited so patiently to meet the baby they have heard so much about.

Yesterday was a day of rest and then today we had another appointment with a whole other set of doctors and a hearing assessment that was inconclusive. Gotta love putting your kid through a whole bunch of uncomfortable positions only to be told that no results were gotten. Awesome. In true Liam fashion we'll have to go for a bunch more tests including another hearing test that he'll be sedated for. We have a couple of procedures upcoming so we are trying to have two of them done at once t minimize how many times he needs to go under anesthesia. Coordinating doctors though is just a bit more difficult than herding cats though so I'm not holding my breath.

Well Liam has woken up and needs a change. Once I get that done its time for this boy to get a healthy dose of vitamin D. The beautiful weather outside is calling and he's been couped up in this house for far too many months. Happy St. Patrick's Day everyone, now go out and enjoy the weather before I beat you with my shillelagh.

Too much information.

2010-03-13T02:17:00.003-05:00

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.

2010-03-13T00:46:00.003-05:00

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?

2010-03-11T00:08:00.003-05:00

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.

2010-03-06T02:18:00.002-05:00

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.

2010-03-03T11:24:00.004-05:00

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.

2010-02-28T02:35:00.002-05:00

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.

2010-02-27T01:39:00.003-05:00

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

2010-02-22T23:09:00.009-05:00

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.

2010-02-21T03:07:00.012-05:00

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

2010-02-18T22:35:00.002-05:00

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.

blach.

2010-02-18T22:09:00.001-05:00

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.

We are the children

2010-02-13T02:03:00.003-05:00

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.

Housekeeping.

2010-02-12T02:21:00.007-05:00

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.

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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.

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9 Awesome posters by Ross Berens. One for each of the planets. (Hat tip to Kottke.org 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.
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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.

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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.
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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.

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Buckle up folks. Its a long rambling update.

2010-02-10T22:57:00.004-05:00

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.

Looking more like his Mom lately.

2010-02-06T00:39:00.006-05:00

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!

Hospital Stay #4 comes to a close.

2010-02-04T00:33:00.002-05:00

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.

Hospital Stay #4 Day 4

2010-02-01T23:46:00.005-05:00

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.

Day three.

2010-01-31T20:49:00.003-05:00

Day three has been the most eventful yet for Hospital Stay # 4. I just changed his fifth dirty diaper! A huge step towards getting better. He has been battling some seizures because with him so backed up the last 4 days not much of his medication has been absorbed into his system. After 2 days of trying we finally convinced enough doctors that the best thing to do is change his doses to be put into his IV not his feeding tube. We have the access point while here at the hospital we might as well use it.

After a very, very, rough night last night the poops this morning was a welcomed sight. He fell asleep in the early afternoon and slept better than he has in at least 4 days. He looked calm and comfortable which has us all very excited.

Karin's turn to spend the night with Liam and I will hold down the fort at home. The cats have gotten very ornery lately without any human contact and so I'll try to pet them before I crash into bed. Very little sleep last night should keep me tired enough to fight off worry induced insomnia.

Hope everyone had a better weekend than we did.

Night all.

Hospital Stay # 4 Day 2

2010-01-31T00:58:00.003-05:00

Day two. We continue to be stalled in 'wait & see' mode. While new x-rays and bloodwork show no changes the newest theory is that this could be a virus. We will continue to watch for any signs of progress i.e. a shitty diaper.

I am having a sleep-over with the little man here at the hospital while Karin goes home to try and get some sleep for the night. Good luck to her. It was my turn at home last night and I hated it. Its just a quiet empty building without Liam and the noise of his ventilator in it. I was anxious and uneasy all night long. I expect Karin to have the same problem. I already warned her.

Liam is finally asleep after having a rough evening and so I am going to try and get some shut eye.

Night all

P.S. The Law & Order episode tally is lower than I expected but still probably higher than you think.

Like riding a torturous bike.

2010-01-29T19:01:00.004-05:00

It may be missing a seat and hurt like hell but you never forget how to ride.

Liam is back in the hospital.

He will be fine and although we pushed for it hard we are not admitted into the ICU. Unfortunately, we are setting up camp on the 4th floor. He hasn't pooped in three days and his full belly is affecting his breathing but more importantly we are unable to give him his meds by I.V. at home and so a short stay here at Hasbro Children's Hospital was necessary.

It amazes me how quickly we all adapt to our roles when we get back into 'hospital mode'. The little things we've learned that come back so quickly. The parking spot in the garage that no one knows about and the secret that going through the RIH ER will get you into this hospital quicker. The subtle wrist flick to show the security guard the bracelet that says 'visiting hours don't apply to me' even with your arms full of stuff. That certain elevators shut down at night and on the weekend. That it is always, always a better idea to get your dinner somewhere else instead of getting a tray of the hospital food. Its like we never left. We know how to survive this.

It came on quickly, as it always does. He was fine until yesterday afternoon. After tolerating his 3:00pm feed Liam started showing signs that his belly hurt. He was cranky and irritable and didn't want to be touched by anyone. He didn't even take his 6:00pm feed and by the time he needed his 8:00pm round of meds he was distended and angry. If he was awake he was crying; and Liam doesn't cry.

We kept a close eye on him overnight with the help of our night nurse. He didn't seem any better in the morning and by 7:30am it was apparent that we would be heading to the hospital for an x-ray at least. 8am is a perfect time to go to the emergency room. No line at check in and no wait to be seen. Walking in with your baby on a ventilator usually lets us skip to the front anyway, but today we didn't even need to.

X-rays are not showing anything serious and there is no reason to get surgery involved yet. The kid is just full of shit. For today the plan is to give his stomach a rest and let him get his meds and nutrition through his IV. Tomorrow we'll try something more aggressive. We've been weaning him off of a particular medicine that helps with his motility and this is probably just his body showing us that he would prefer it if we didn't do that. Once we get what is backed up in there out, we can simply start up the med again to keep him regular.

Karin will be spending the night here with him tonight and its my turn tomorrow. Liam is riding out this hospital stay the way he rides them all out. By sleeping through it. He hasn't woken up much today and I don't expect much activity out of him tonight. His mom will be with him to keep him comfortable and I'll be at home tossing and turning in bed and feeling guilty that I'm not here even though only one of us are allowed to sleep in the room. (not counting Liam of course)

That's where we're at. Just passing time while Liam gets better. There are a limited number of channels on the tv in his room and yet I am always able to find some flavor of Law & Order to watch. Guess how many you think we'll see and I'll post the tally on Monday. Have a good weekend everybody and pray that my little guy poops.

What happened to me this afternoon with a couple of new pictures

2010-01-26T01:25:00.006-05:00

"Its the whole neighborhood right? I mean... you guys are working on it?" The rain was coming down in buckets while I stood next to the pickup truck of the power company supervisor. "My son inside is on a ventilator and we have about 8 hours of battery but after that we'll have to go to the hospital unless you can get the power back on soon." I was glad that I had stepped onto the porch at just the right time to flag down this guy. The power had been out for about a half hour at this point.

"Looks like a fuse blew on the pole here." He said pointing across the street from my house at the same time a large cherry picker rumbled up to the pole. "He's gonna re-fuse it now and you should be all set." He seemed to be annoyed with my questions but I didn't care.

"Well, as long as it doesn't take 8 hours, I really don't want to spend time in the hospital because of a bit of rain and wind." We actually had 12 - 16 hours of battery life but he didn't need to know that. The old man assured me it would only take a few minutes and I ran inside to get out of the rain. Liam was resting in his special tomato and never in any danger but not having anywhere to plug in his equipment was stressing me out.

I watched the tech jump into his basket and put new fuses into the transformer on the power line and the lights were on in a flash. I hooked Liam back into the main power and got the battery recharging just in case we'd need it again. The trucks drove away and Karin and I got Liam ready for his visitors. Within a few minutes the whole gang was here. His physical therapist, his occupational therapist, the services coordinator from Liam's early intervention program and a nurse from the same program all got comfy around Liam on the floor and we started his exercises and talk about any changes needed for his care. I am usually at work when PT is here and so I was excited to work with his therapist to make sure the stretches that I work with Liam are the right moves. While normally we meet with only one or two of them at a time today was just a meeting to ensure that everyone is on the same page.

Starting at his toes and working our way up with stretches, we barely made it to his knees when the power went out again. We hooked Liam back up to his battery and put an HME into his circuit. The HME acts as a nose, humidifying and warming the air pumped through his circuit while his humidifier and heater are without power. Nothing that we could do would change the power problem so we proceeded with Liam's work. I'm so proud of all that he's accomplished. His flexibility and muscle control have improved so much since we started meeting with physical therapy. Today he was active and eager to participate. He recognized himself in the mirror and was quite enamored with what he saw. That kid of mine is amazing.

When your child has the kind of medical needs that Liam does your life is filled with contingency plans. Most of them end with "and if that doesn't work, just go to the emergency room." Its not an option I like to think about. Simply walking in the door will more than likely leave us stuck there for a few days no matter the reason and going there for a non-health related reason would really piss me off. As well as probably pissing off my shitty insurance company. Yes we could go to my parents' house with all of our portable equipment for a while and we would, long before we would go back to the hospital, but that doesn't make it any less stressful. The waiting. Which would come first? Our contingency plan or the repair to the power lines? It made me miss the days of worrying only about the food in the fridge when the power went out.

It was only a few minutes before the supervisor from the power company pulled up and parked in front of the house. We are on a registry with the state Department of Health and with the power company for people on life support equipment but I'm sure that it was because I flagged him down earlier that he stopped by and not some sort of protocol. Either way it was much appreciated. He let me know what was going on, and that a second truck was needed for the repairs down the road. It would be almost an hour and a half before the work would be completed. It didn't take nearly that long but at least I was prepared for it. I was useless for the remainder of the appointment as my attention could not by taken away from the two crews of guys working to restore my power. The rain and wind made what is already a dangerous job look even more terrifying.

The power was back on again in half the time we thought it would take. The trucks took off and all of our visitors finished up their paperwork and left in almost the same order they arrived. All of the sudden Karin, Liam and I were home alone and all was well. Liam, tuckered out from his workout, lay asleep on a quilt on the floor. Karin and I settled in on the couch for a relaxing cup of coffee and something to watch on TV.

It was an eventful afternoon but we are none the worse for wear. As I said I couldn't be prouder of Liam for all of the progress he's made and his willingness to work hard for us during his workout. 9 months in a hospital bed and his syndrome have left his muscle tone a bit weak for his age but he remains undeterred and is still getting stronger by the day. Go Liam!

Its back to work tomorrow for me and Karin has plans throughout the day with a very, very close friend who she doesn't get to see very often. It will be her first meeting of Liam and it is a very big deal. I'm sorry that I'm going to miss it. Have a good night all. There are a few pictures since I haven't posted any in a while. The one of his lion hat is a few weeks old but the other was taken during the power outage.

Night all.

Cleaning up some bookmarks.

2010-01-24T02:27:00.004-05:00

Kurt Vonnegut Motivational Posters. It took some doing for me to decide on which poster I wanted to use for the link. I decided on this one because I love the photo. Little gems of wisdom from my favorite writer of all time. Ting-a-ling.

*****
Financial Times has a fascinating article up about stray dogs across Moscow that are able to use the mass transit system.

They also acted differently. Every so often, you would see one waiting on a metro platform. When the train pulled up, the dog would step in, scramble up to lie on a seat or sit on the floor if the carriage was crowded, and then exit a few stops later. There is even a website dedicated to the metro stray (www.metrodog.ru) on which passengers post photos and video clips taken with their mobile phones, documenting the savviest of the pack using the public transport system like any other Muscovite.

****

It was of consequence, I should think; verily, it tied the room together

What if Shakespeare wrote The Big Lebowski? This has been floating around the Internet for a while and I think I remember reading somewhere that a small theater company in NY is going to stage it this spring. Funny stuff though I am not sure it stays consistently in Iambic Pentameter. Then again, I could be wrong on that. Shakespeare has never been my strong suit.

****

That's all I've got. Funny, I thought I had more links to post but can't find them in my reader or my bookmarks. Oh well. I should be writing my own content anyway right? In home news there really isn't any, and, as has been the case since Liam was born, no news is good news. Liam has been having tons of fun with his mommy while his daddy works all weekend. Some progress has been made on the printer project and while I did take this morning off, Karin and I have been going to the gym nearly every day.

Its 3am now and Liam is actually sleeping. Karin is upstairs getting the rest she needs (and deserves) while I hold down the fort. Ventilator has been double checked, feeding pump has enough formula to make it through the night and some old Law & Order episode just started on cable. Good night all, time for me to stretch out on the couch next to Liam's crib and try to sleep.

2010-01-21T23:10:00.005-05:00

A day off for the ages folks. Both fun and productive which is a good combination since its usually one or the other. Or neither.

Anyway, the day started with Karin and I getting to sleep late. The new nurse impressed us enough yesterday that we felt confident enough we didn't need to be hovering over her today. Karin came back to bed after greeting her and we got a few restful hours. Liam finally fell back asleep for the nurse around 8:30am after being awake most of the night and we new he'd be done for until the afternoon. After leisurely making breakfast and checking emails Karin and I took advantage of our nursing situation and left the house together.

Let me say that again, really let it wash over you this time. Karin and I were able to leave the house together and spend a few hours out there in the world.

We went to the gym and worked out together before going out to lunch. It was fun and calming and we both needed it.

After lunch I took the christmas lights off of the house and attempted to clean the leaves from the yard that I wasn't able to get before the first snow. That's when I realized I didn't have a rake, only a leaf blower, and even though the snow is gone most of the leaves are still frozen to the ground. "Mission leaf-clean-up" was quickly abandoned in favor of "Mission cup-of-coffee-on-the-couch". A mission that I was well suited for and accomplished with relish.

Already one of my more productive days, I wasn't done yet. At about 3pm my father came over and we got to work on finishing up some shelving units we built for my basement. There is still some unpacking work to be done down there but I'm better prepared for it now. Hey, give us time, we only moved in 8 months ago! Dad finished up our last project and I organized a spot for our next.

My father has given me his two Epson 3000 Color Printers. Fickle machines they are, one will be used for parts. A beast of a printer, it needs some cleaning but I can't wait to get it up and running. I feel like Gutenberg and I'm ready to start my own print shop. Producing my own prints has already gotten me excited about photography again. I needed a place to put my new equipment and so my dad and I built another shelving unit for it and in the process put together a small office space for it in the basement. I can't wait to get started.

My mom came by as we were finishing up and my parents got to spend some time with a decidedly sleepy little boy. The day was capped with an excellent shepherd's pie made by The Wife and watching TV while holding my boy who of course woke up ready to play at about 10:30 at night. I'm beginning to think that we have spawned a vampire. Not a sparkly girly Twilight vampire but a badass tough guy vampire like in Lost Boys. I'm on team Liam.

Well that's that. Karin is upstairs getting ready for bed. Liam is being read to by his favorite home nurse and I am boring you all with lame stories about shelves and leaves. Have a good weekend folks. Oh, and for the "pics or it didn't happen" crowd, if you thought reading about it was boring try this on for size...

Now who's got something that needs printing?

Its all about Liam.

2010-01-20T09:49:00.004-05:00

I'm blogging earlier than usual today as Karin is at the gym and I am up to answer any questions for our new nurse who just started. The first day with a new nurse is always a bit of work to put together. They need to get to know Liam. They need to get to know us. More importantly we need to get to know them and whether or not they will be a good fit for our family. These people are in our home; having a nursing degree and some experience is not enough to ensure that they'll work out.

So far so good with this nurse. She seems knowledgeable and pleasant enough. One concern is that she is allergic to cats. I can't tell you how many times we have told the agency about our cats but nurses who are trained to handle trach and vents aren't all that common and sometimes we have to take what we can get.

Our usual daytime nurse needed to take some time off which Karin and I can completely understand. It will take some time before we can both leave the house or sleep late again. Hopefully this new nurse will catch on quickly and Liam will like her and we can get back to planning our mornings to include running errands and going to the gym together. We'll see. Liam hasn't woken up yet so we aren't even sure how he will respond to her. I think he'll like her but we'll see.

Liam did great at his pediatrician's appointment yesterday. To get all the dirty details out of the way he is now weighing in at a lean 21lbs 7oz and 27inches long. He is now officially, and for the first time in his life, tracking along the growth curve. Gone is the ever increasing chunkiness he's now a lean mean pooping machine. We discontinued one of his GI meds and are on our way to getting rid of another in the next month. Yay!
Liam and his daddy at the Doctor's office.

He had to get his 12 month immunizations and so got 3 shots all at once and then needed a blood draw to check a CBC and Electrolytes. My boy is one tough cookie because he took all those needles like a champ. HE even fell asleep as the lab techs in the office hemmed and hawed over where oh where to stick him for the blood work. They were so distraught made worse by the fact that when they asked where he would get blood work when in the hospital Karin told them that he had to have a central line put in by a surgeon. They were not happy to hear that. They did their jobs well though because since they took so long t find just the right spot once they did stick him they were able to get everything they needed rather than be forced to make multiple attempts.

After his appointment we all came home and since I had the day off from work we were all able to take a nap in the living room together. Wonderful Quiet. It was a wonderful day. There truly is nothing better than taking a nap with the boy.

So there you have it. Liam has had an exciting couple of days and is still sleeping as we speak. It is possible though that he is playing possum and pretending to sleep because he doesn't know the strange older woman sitting next to his crib. He does that sometimes, hoping that if he doesn't open his eyes the strange woman will just go away. No such luck buddy, her shift ends at 2pm.

Can you fall asleep with the hiccups?

2010-01-19T01:43:00.004-05:00

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

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

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

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

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

No Brainer

2010-01-14T01:29:00.006-05:00

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

HBO is showing Army of Darkness right now.

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

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

2010-01-10T01:05:00.002-05:00

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

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

Ummmmm.....

Un-Freakin-believable.

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

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

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

The coolest cupcake website I have ever seen.

2010-01-09T01:03:00.003-05:00

Step one: Bake 100 cupcakes.

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

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

The coolest cupcake website I have ever seen.

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

2010-01-07T00:46:00.004-05:00

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

Excuses.

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

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

* * * *

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

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

* * * *

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

* * * *

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

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

Not much to say today.

2010-01-05T02:29:00.003-05:00

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

In which I discuss the relevance of hockey

2010-01-02T00:42:00.005-05:00

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

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

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

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

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

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

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

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

What a way to start the new year.

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

2009 Under Pressure.

2009-12-31T01:29:00.011-05:00

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 Goodreads.com. 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.

One Year.

2009-12-27T01:07:00.003-05:00

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.

Liam's First Christmas

2009-12-26T00:23:00.002-05:00

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.

Santa Came!!

2009-12-25T08:36:00.010-05:00

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.

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

2009-12-24T00:08:00.006-05:00

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.

Ready to call it the best Blizzard of 09.

2009-12-20T23:16:00.005-05:00

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.

2009-12-20T00:01:00.004-05:00

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.

One year ago.

2009-12-19T02:51:00.001-05:00

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.

The furthest from home he's ever been.

2009-12-17T00:35:00.003-05:00

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!

Appointments

2009-12-15T22:50:00.003-05:00

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.

Just some photos

2009-12-13T03:25:00.007-05:00

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.

Lucky

2009-12-12T01:09:00.004-05:00

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.

Just closing up tabs.

2009-12-10T01:33:00.006-05:00

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.

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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.

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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.
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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 Kottke.org 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.

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Living in the Future.

2009-12-08T00:38:00.005-05:00

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.

Holiday Card Day.

2009-12-06T23:52:00.005-05:00

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.

2009-12-06T01:02:00.004-05:00

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.

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

2009-12-05T02:00:00.002-05:00

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?

Beers and Bedtimes

2009-12-02T00:10:00.003-05:00

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.

My Writing Process

2009-12-01T01:15:00.001-05:00

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.

Tomorrow.

Don't tell my boss

2009-11-29T13:08:00.001-05:00

The use of the desktop blogging service Zoundry Raven is not going well which is a crying shame because I absolutley love the user interface. If it would actually post to the blog then we'd be all set. I'm being a very bad boy and posting this from work but I hope to have all of my technical difficulties worked out soon.

By the way, Liam is doing wonderfully even if he is a bit groggy as he gets used to his new seizure med. It appears to be working (please knock on wood for me when you read that) but it will take some time for him to adjust and not be so sleepy all the time. He had a nice visit from some of his NICU nurses yesterday and he loves it when his Uncle Phil and Aunt Jannah are in town from Chicago.

And now, work.

Zoundry Raven

2009-11-29T01:02:00.001-05:00

Trying to use a new free desktop blogging client called Zoundry Raven without much success. I like the UI for the app but it is proving difficult to actually post. Trying this test to see if its because of the images.

2009-11-28T03:34:00.001-05:00

3YDXX6FAWPYB

That is all.

A year without holidays

2009-11-28T01:19:00.004-05:00

The title is true, it has been a year without holidays. All of the previous holidays of 2009 were spent in the hospital and although now home Thanksgiving was no event either. Karin and Liam stayed home while I went to work. My mother had all of the family over at her house but the crowd and so many people travelling from all over the region means waay too many germs for a visit from the baby. He did have a few visitors at home though. The most important being his Uncle Phil and Aunt Jannah who drove in from Chicago in a rented Smart Car. (they made quite a splash with the car when they parked it facing the road because there wasn't any space long enough to parallel park.)

I missed it all of course while working all day at a place that makes me miserable. Awesome.

The Wife did send me an awesome photo that she took with her phone to cheer me up. Check it...

Uncle Phil brought with him his latest homebrew. Liam's Lager was brewed with yesterday in mind as its first drinkable day. It has been aged 154 days, or the same amount of time that Liam spent in the NICU. I will post pictures tomorrow of the bottled product as the labels contain a truly bitchin logo designed and drawn by Liam's Aunt Jannah. (yeah that's right, I use the term bitchin. deal with it.) The beer is delicious which didn't surprise me, as all of my brother's brews that I've tried have been good, but this one is fantastic. Karin loved it too and she is not the biggest beer fan in the world.

As far as Liam updates go there isn't much to tell. He's freaking awesome. Nuff said.

The Sandman series continues to be my only reading although I'm hoping to hit the library before Monday. I added a Goodreads widget to the right that will always show what I'm reading. I think the Goodreads site is fun but I don't have enough friends to get recommendations from so if you know anyone on Goodreads let me know.

Its been linked to everywhere but this is a great interview with Cormac McCarthy about The Road as novel and movie. I loved this book. I read it on the plane ride to Chicago last year and had to stop to cry a number of times. The relationship between father and son hit me hard as I was expecting the birth of a son myself. Which is why I am conflicted about the upcoming movie. There is a big part of me that is excited to see Viggo in the role of the Man but I am terrified that it will fall completely flat and tarnish my view of the story itself. If its OK that's one thing but if it truly falls flat will those images replace my vision of the great apocalyptic tale? Whatever -- I haven't seen a movie in the theater in over a year its pretty silly to think I'd start now. I have time to put this decision off. Just go read the book before you see the movie alright? Good.

Lately I've noticed that when I'm at home I don't even notice the noise of Liam's ventilator but when I'm anywhere else all I can notice is its absence. I don't exactly miss it but I can't help but notice its not there. Its hard to explain.

As I type this post the Foo Fighters have been playing on the VH1 Storytellers show. First of all, where do they get off being together for 15 years now?? 15 years? Damn I'm old. Anyway, how is it that I have not seen these guys live yet. Seems that they put on one hell of a good live performance. Damn these guys are good.

And now, sleep.

All seizures all the time!

2009-11-21T00:42:00.004-05:00

It's been an extremely long week. I will try to recap...

Monday -- Liam has his longest and most severe seizure needing Diastat to break him out of it. We also notice that his seizure activities were starting to change. Rather than one strong event these were looking like a cluster of many, many short seizures over 15 to 20 minutes. I mention to Karin that this must be infantile spasms. A common type of seizure for kids with Liam's syndrome.

Tuesday -- A few more seizures that seem to upset Liam more. Neurology contacted but not much they can do until we see the doctor on Wednesday morning. In wonderful timing on Liam's part the appointment was made months ago. Also Karin gets deeper and deeper into a battle with the insurance company over a very, very important drug that we were already told would be covered but now they're dragging their feet.

Wednesday -- Doctor's appointments in the morning. First with pulmonology who were very happy with Liam's progress. No changes to vent settings. Then with Neurology who spent almost an hour talking with us about the seizures. He diagnosed the small clusters as infantile spasms pending an EEG for Thursday. The treatment will involve many eye exams in Boston to watch for a side effect that can damage the eyes. Liam's eyes are already damaged enough but the other treatment's side effects are even worse and the decision was a no-brainer. In the afternoon Karin continues her battle with insurance as they continue to drag their feet on a treatment that could potentially leave Liam susceptible to a life threatening illness. I'll get into why you're wrong if you're against health care reform in a later post, this post is supposed to be about Liam.

Thursday -- Get the whole family out the door bright and early to get to the hospital at 7:30am. EEG nurses are friendly and efficient and we are quickly processed and they fix the sensors to Liam's scalp. The test can last as long as 6 hours but we were hoping that Liam would help a little by showing us everything we needed to see. He did. He stayed awake for about twenty minutes, he slept for about twenty minutes and then he had one of his seizures for about twenty minutes. After it was through the nurses said they had everything we needed and sent us home. Liam was tired and slept most of the day. He has been sleeping most days this week as the seizures have taken a lot out of him. It has been difficult but we (mostly Mom while I'm at work) have done a good job of making sure he does all his physical therapy each afternoon. More phone calls to insurance companies, doctors offices, and pharmacies. Being Liam's Secretary is a full time job in itself.

Friday -- The doctor calls to tell us that the EEG results confirm his (and my) diagnosis and we need to get into his office quickly to sign all the paperwork to start treatment. Karin drops me off at work and heads there while we have the nurse in the morning. Liam is having more spasms but they seem to be less intense. We all hope that the treatment we have chosen works and works fast. The insurance company officially says no to the other treatment I mentioned. There are no alternatives and it is a med that Liam must have. It costs a little over $2000 dollars a month but luckily the state will be picking up the tab. Because Liam was born so small he qualifies for state aide which is the only way this family would survive. All companies and offices called and confirmed and we should have the med soon. Hopefully by Monday.

Through all that we also had our non-Liam stresses and obstacles. Sleep has been scarce and we haven't been eating well or exercising. My work sucks and I haven't done much reading and even less writing. Through it all, Liam has given us both so many smiles, hugs, and kisses. In one glance Liam can make all the headaches, the frustration and the aggravation melt away and be forgotten. Without him in our lives we may have a bit more free time and a little less stress but I wouldn't trade it for the world. Its truly a small price to pay for the joy that Liam brings to my heart each and every time I see him, hold him, or even think of him.

Posting to (hopefully) resume a somewhat consistent schedule. The In-laws visit tomorrow and I'm hearing good things about the weather. Things are looking up!

We'll call them blog McNuggets.

2009-11-17T01:41:00.005-05:00

I still wake up in the dark of the night and the first thing I think to myself is - "I gotta call the hospital and check on Liam!" Even if he's right next to me. It happens a lot more often than I'd like to admit.

The seizures seemed to only get worse as the week and ultimately the weekend went on; with a grand finale of a seizure this morning just after I left for work. This one lasted about five minutes and for the first time he needed a diastat shot to break him from it. He slept for the rest of the day (you would too after a shot of valium like that) while Karin contacted his neurologist and got the new doses for his meds. We increased a dose of medicine and will be seeing the doctor on wednesday morning anyway. The appointment was actually made months ago so Liam's timing couldn't be better. He has been fine all day and all night but I hesitate to expand on that as it would be what we call - tempting fate. (yes, of course I'm knocking on wood as I type this.)

The big move to the second floor is still in progress but we are into the nitty gritty details now. Our space upstairs feels comfortable and welcoming and is a small escape from nurses and visitors. When your house feels like a clinic a nice quiet room is all you really need.

Liam continues to get bigger and bigger as I think I forgot to mention that at his last pediatricians appointment the big guy weighed in at 19 lbs. 12 oz. !!!! My little chubs.

We're all gonna pretend that last night's patriots/colts game just never happened K?

The Sandman Series is everything I hoped it would be. Great, now I have to go out and buy all the books.

The neighbors across the way set up their Christmas lights last night and a gauntlet has been thrown down. One that we simply can't compete with. Lights everywhere, an inflatable snowman and not only a large inflatable Santa Claus but also a large inflatable reindeer dressed like Santa Claus. They did a good job and it pleases us that we can see it all from the couch.

I'm hoping that the Redbox gets the new Star Trek movie quickly. We haven't been to a movie all year and so I have a lot of catching up to do. The Hangover, Inglorious Basterds, District 9, and Where the Wild Things Are are on the list too. I'm beside myself with excitement for Viggo in The Road too.

Liam decided to stay up all night tonight! Yay! So here it is 3am and he is still awake. Good thing we have no early appointments tomorrow. He may still be awake but I'm fading fast. Couch next to his crib is always comfortable enough for me, even if it is about 6 inches less wide than I am tall.

Night all.

Is it still legal to write something without mentioning Vampires?

2009-11-15T01:59:00.006-05:00

Firstly, a quick note about the photos. I used to take a lot of pictures. I mean lots of pictures. I got pretty good at I think, but I stopped for close to 6 months as I spent more time in a hospital than out of it. As a result I am very off of my game. Instead of RAW I have gone back to using JPEGs because I haven't even unpacked my desktop computer that I do all of my photoediting on. We moved in April. Not wanting to clog up the laptop that both Karin and I use all of my edits to the photos posted here have been done in Picassa. Which is a great tool for photo organizing but shit for editing. I hope to have that fixed by the end of tomorrow and so I hope that the quality of the images here will improve. I try not to rely on my software to fix photos but I do like finer controls on setting my levels and white balance as well as better sharpening tools.

In a related story Karin and I made wonderful progress on our relocation to the second floor today. We'll be sleeping up there tonight, taking turns of course. Tomorrow the "office" side of the floor will be finished (hopefully). My mother helped a great deal by babysitting for us. Her expression when we asked her to babysit was priceless. It is one of the hardest parts of Liam's medical needs that we can't call on those closest to us to help take care of him. Even though we never left the house having someone there to hold him and engage his attention freed Karin and I to get some serious work done. After a day of moving furniture, organizing medical supplies and unopened boxes from the move Karin and I sat back and admired our accomplishment. We looked around our new room and at each other when she said it. "You're going to write your book in this room." She said with a smile. She's absolutely right and I am so happy she pointed it out to me.

The Vent. I talk about it enough and today it occured to me that I should put up a pictures so you could see what I'm talking about. This is Liam's LTV (or LapTop Vent) 950. It is his stationary vent. It is on wheels and so not exactly stationary but it stays in the house rolling between his bedroom and the living room. It is hooked up on one side to an enormous liquid oxygen tank and on the other to a heater/humidifier before ending up hooked to Liam. The blue velcro straps taped to its front are a template for Liam's trach ties. These small straps are changed daily and hold Liam's trach in by connecting around his neck. They need to be cut precisely to fit and so the template helps us do that quickly. Liam has another vent for traveling that does not have a big stand with wheels but comes in a backpack for ease of carrying (typing that just made me laugh out loud).

Here is his vent set up next to Liam's Pac-N-Play. This setup is for when he is in the living room with us. Most of that time is spent on the floor or in his new Special Tomato which is a piece of physical therapy equipment helping him sit upright. When he needs to lay down for a break or for naps he lays in this. The small blue box on the stand to the left is his feeding pump. The blanket hanging over the banister was the covering that would be draped over his isolette (formerly known as an incubator) to give him darkness when he was in the NICU. The small patch of orange fuzz sticking out of the pac-N-Play is Levon the Lion. Liam's favorite toy in the world.

Liam loves his circuit. He can often be found holding onto his circuit while sleeping. I think he knows that they are there to help him. Before he got his trach we heard that babies love to pull their tubes off but Liam has never tried. He's disconnected himself when the tube gets caught on his foot, but he's never done it on purpose. If you just read that outloud please knock on wood for me. All we need is for Liam to figure out that if he pulls it off alarms will sound and parents and nurses will come running. Its a pretty good way for him to get attention.

This is the Special Tomato mentioned above. I think it makes him look like a fighter jet pilot. He fights it for a few minutes but once he realizes that we aren't going to take him out he gets over it and goes to sleep. The frog toy is an Eric Carle toy and as soon as Liam woke up and saw it there he smacked it across the room. Make a note: Liam does not like frogs.

Am I the only one who kept thinking "why the hell are all these lists coming out about the best of the decade?" for weeks before realizing that we are less than 2 months away from 2010?? 2010?? Really? That does not seem possible.

Pictures of terrifying scarecrows. The fourth one down is awesome.

Saw this in a bunch of places already but still think its cool. A flow chart of Hey Jude.

Film clips from TV, and movies that come together into a wonderful song. Just watch it because its hard to describe. The time it must have taken to make this is impressive.

Internal clock has gown so screwy that I am sitting here at 3:10am and I am wide awake. Picked up the 3rd, 4th, and 5th volumes of the Sandman collection from the library yesterday. Going to read until Karin wakes up to relieve me of my post in a few hours.

Night all.

A couple of photos and a quick update.

2009-11-12T01:09:00.006-05:00

Nothing major to report from the homestead today. Liam had good days and slept through the night again. He's a bit cranky because he finally got his H1N1 vaccine yesterday (whew...) and he had another seizure this afternoon but just a bit of a blip and nothing worth worrying too much about. He has otherwise been active and alert and simply wonderful to be around.

He had a nice long visit with his Meme (My Mom) yesterday and another long visit from his Grampa (my Dad) today. Its a very good thing that Liam loves to be held.

We have been weaning his oxygen veeerrrry slooowly. He's down to 1liter of flow and could probably go even lower as he is satting at 100% most of the time. We have decided on a long term plan for the wean because of the severity of this year's flu season. Had we come home in May or April and facing the summer where less bugs spread we would be much more aggressive. Let's get through the winter before we make any major changes. He deserves to get some rest and grow stronger before we ask any more of him.

I hope everyone got a chance to thank a veteran today. Thank you, men and women of the military for your service.

I had to work today but only for a half day. Came home and met with a service care coordinator for Liam and then spent the rest of the afternoon holding my boy and reading to him. We played games and sang songs. There is no better way to spend an afternoon.

Karin and I are making breakthroughs and major decisions with the home nursing situation. It is a strange thing to have a staff of nurses in and out of your small house and as we have grown more comfortable we have grown more assertive. It is important that everyone in the house remembers who is in charge of all decisions...Mom is. Sometimes she even lets me think that I had a part in the process. We have made some room layout decisions that will give us more of a private space that Liam can come with us where we can escape. To run away from the stream of visitors and "staff" -- Physical therapy, occupational therapy, speech pathology, Nurses, medical equipment representative, oxygen delivery man, Nursing supervisors. More people have come through the house in the last month than we have had over to any apartment we've ever lived in. The second floor will become our little oasis. An island from the stress and chaos. A comfort zone. I can't wait to get started this weekend.

Got a bunch of cool links but not nearly enough energy to put a list together now. Now, we try and sleep.

Night all.

You'll get a hang of the routine in time.

2009-11-10T23:15:00.002-05:00

Night nurse = sleep.

Night all.

2009-11-10T00:46:00.005-05:00

As usual I'm tired. I don't expect to post much other than a quick update. Liam had a couple of small seizures today. Neither lasting longer than a minute and he recovered from both of them on his own and without having to knock him out with meds. We will adjust his daily med doses with the neurologist tomorrow and hope that we can go longer next time between events. Unfortunately, seizures are just another thing that Liam's mom and I have to manage. He will always have seizures but they can be well managed with meds. Problem is we don't know that we need to adjust his meds until he shows us -- by having a seizure. We are very lucky in both the frequency and severity of these events. I don't mean to sound flippant or nonchalant about this but its just one more thing. Another item on our checklist of things to watch out for.

One of the other items on that list is Liam's G-tube and Mic-Key button which he has had for about 7 months. The button is a small tube with a closure that is a few inches from his belly button that pushes into his stomach and is held in place by a liquid filled balloon. Picture the air nozzle on a beach ball just sticking out of my kid's abdomen. It attaches his feeding tube and to be honest, makes late night feeding very easy. "Just set the feeding pump and walk away." That's right just like Ron Popeil says -- "SET IT AND FORGET IT!" Well tonight I saw a slight rise in his heart rate for a minute or two and knew something was irritating him but not enough to wake him. Sure enough, the balloon holding his Mic-key button in had sprung a leak and he popped it out. It couldn't have been out long because there wasn't much formula on the blanket so I popped the old one back in to hold the tract and got a fresh button. New one went in fine and Liam didn't even wake up! A bit of half digested formula aside neither of us were worse for wear and we didn't even wake up mom. He is more bothered by a diaper change than he is when I push a big piece of plastic into his gut. This kid cracks me up.

He's been sleeping through the night for us lately now that he can roll himself over to make himself comfortable so I think I'm going to hit the sack. "Sleep when the baby sleeps" they say but I doubt that they had the not so quiet sound of a ventilator by their head. Or pulse oximeters, or feeding pumps...the noise never.stops.

One quick note - in Liam's first days I was writing a Carepage, a blog set up by the hospital. It was a wonderful way to give updates to our friends and families on his early progress and our first days as parents. As Liam got older and we spent more and more time at the hospital I slowed and eventually stopped posting. I wanted more freedom in design and functions and it was a closed invitation only site. Some of the pieces posted there I am still very proud of, and some of the comments left were very eloquent and meaningful to me. I would like to post some of them here and add some reflections on them given my new experiences and knowledge. They will be compiled into a certain category and will provide some back story to Liam's long journey. I still haven't yet decided one thing. Liam's first birthday is the end of next month. It might be cool to post them on the year anniversary of their original posts. Each day that I posted there in 2009 I will post here in 2010. Might be fun no? Or I'll just throw them up willy nilly whenever I feel like it. I'm not what you would call a patient man and so I'm betting on the latter but I think the idea is a good one.

Night all.

The Books I love to Re-Read.

2009-11-08T22:44:00.003-05:00

It has been an absolutely wonderful weekend. More time with Liam than I have had in a long time and he was rock solid the whole time. Karin got the sniffles so we benched her and I subbed in as chief snuggler, feeder, pharmacy and diaper changer. We had a great deal of fun and I enjoyed the responsibility.

I watched Rainn Wilson's The Rocker on HBO the other night and loved it. I decided to give up on Palahniuk's new one Pygmy as it hasgotten too violent for me. I listened to my friend Anthony's band's (Barn Burning) newer album Werner Ghost Truck and loved it. Hmmm I guess that's it for this weekend. I did watch me some Law & Order's this weekend though. All types too! SVU, Criminal Intent and both old school and new plain old vanilla. Oh, and I watched as the Patriots marched over Miami on their way back to the playoffs.

I don't often give up on books. I like to try and trudge through to the end hoping for some kind of twist moment that makes me all of a sudden adore the author or style as if it just took time to appreciate it. Sometimes I just can't make it through, but instead of wanting to read any of the titles I haven't read yet that sit on my shelves I'm thinking of re-reading Catch-22. Again.

There are a few books that I go back to every few years. Some of them during specific seasons. Here is a list of a few...

Cat's Cradle by Kurt Vonnegut. This one I've read far more than any other book. changed the way I looked at books and the way they were written. I carried a copy of this in my backpack / Overcoat pocket for most of my early 20's. If I ever want a jolt of inspiration or motivation I read Cat's Cradle. I definitely read this once a year as it can be read in one sitting; Most years though it probably closer to 3 or 4.

The Lord of the Rings by JRR Tolkein. My father was very adamant that I read Tolkein's masterpiece when I was in the seventh grade. I have read it every 2 or 3 years ever since. Fellowship feels like a warm cup of hot chocolate to me as I almost always start it on January 1st. A Bi-Annual tradition of sorts. Come in from the cold of a blustery wintry day to warm up of thoughts of Rivendell and Lothlorian. In a comforting coincidence because of their release dates the extended release DVD's of the movies have also become a holiday tradition for me and my family which serves as a nice warm-up for the re-reads.

The Grapes of Wrath by John Steinbeck. The great American novel. My Wife and Mom hate it when I read this one. All it does is make me depressed for a couple of weeks. I cry every time. Sometimes we need to read things that make us sad, and angry, and frustrated, and yes, even depressed. It is so exquisitely beautiful in language and tone. Steinbeck rivals Vonnegut as my favorite writers of all time. (Truth be told, I'm a few years overdue for a re-read on this but I just don't think I have the strength to endure it. As the father of a very sick infant I have enough stress and as an aspiring writer I don't think I could take the internal comparison and criticism of my own work this would bring. How could I possibly think I could come even close to creating something as wonderful? And if I can't, then why bother?)

Catch-22 by Joseph Heller. By far the funniest writing I have ever read. I, like most, read this in my freshman year of college and was laughing all the way through. Are we allowed to make fun of military service during WWII? I wasn't sure but I was so glad that Heller did. This is a summertime read for me. It always seemed hot on Pianosa.

The Hitchiker's Guide to the Galaxy by Douglas Adams. The not-to-be-overlooked runner-up in my funniest books category. My good friend Patrick Farrell introduced me to Adams and although at the time I was unable to understand some of the subtleties of British humor it was Adams that prepared me for Monty Python not the other way around. Heller and Adams showed me that serious literature with real messages could also make people laugh so hard they get stared at by the strangers around them on the bus. An Autumn read. I have no idea why on this one but I always seem to read it in the fall.

There are a few more beyond that but I'm getting tired and those are the important ones. Someday I'll put together a list of the short stories I keep going back to over and over. Hope you like Flannery O'Connor, Dan Chaon, Vonnegut (of course) and Twain.

The Days are Just Packed.

2009-11-07T21:14:00.005-05:00

Liam's care can be very intensive at home and with me back at work much of that falls to his mother. The weekend is the time when I need to make it up to her by giving her a break. Its a selfish act really because the hours of the day when I work are Liam's most active and alert. His twice daily medicine regimen has him pretty drowsy both before and after my work shift. The weekend is my time to play.

I wanted Karin to get a nice long night's sleep last night so I told her to sleep all night and I would handle all alarms, suction, and med doses. She let me get a few hours sleep in the morning and then the real fun began. She plopped him into my arms as soon as I poured my first cup of coffee and the two of us drifted in and out of sleep watching the TV on the recliner. There is no better way to start a weekend.

My Mother-in-Law came for a day visit and spent the early afternoon holding The Boy and catching up with us. I knew that Karin has not left the house since we came home from the hospital so it was time for her mother to take her shopping so that they could get some alone time. Karin needs more time away from it all to decompress so I was very glad that they really took their time. Liam and I spent the male bonding time reading and watching TV. Law & Oder Criminal Intent is one of Liam's favorite shows so he was happy to see that their was a marathon of it on cable.

Liam has spent close to 90% of his life on his back in a hospital bed so time in any other position is so beneficial to start strengthening his core muscles. We spent the rest of the afternoon rolling around on the floor. I snapped the photo above while we played with a exercise two. And we sat on the floor together to watch The Lion King. I forgot how much I like that one.

My Mom & Dad came over with dinner and we all had a great meal before my Mother-In-Law headed out for home and my parents followed suit a little while later. Karin and I got Liam ready for bed. Just before getting his big 8pm med regiment Liam rolled himself over onto his side. A big move for a kid with the muscle tone issues Liam has. This may be why he has been sleeping through the night lately. He can finally make himself more comfortable by repositioning instead of needing us. We'll take any kind of Independence we can get from Liam. It was a fun moment.

I don't think I could have written a better Saturday. I laughed a lot. I smiled a lot. I got to be the daddy I always thought I could be all those days in the hospital waiting for my turn to take care of Liam.

Blogging to resume after good night's rest.

2009-11-06T00:01:00.003-05:00

Home nurse tonight. We delayed it for a full day to have some private, quiet, family time but our nursing care schedule kicks back in tonight. We'll have a nurse from 11:00pm to 7am and then another one tomorrow morning starting at 8am. Then it we'll have the weekend to our selves again. Its been over a week since either of us have had a nice chunk of sleep and so rather than stay up and write I am off to bed.

Night All.

Because this song is freaking awesome and it makes me smile.

2009-11-05T21:48:00.001-05:00

(Thanks Scalzi)

Just a bunch of Homebodies.

2009-11-05T02:21:00.003-05:00

We're all home now! Liam was sprung at about 4:15pm. I'm pretty tired from work and kid stuff but I need to force myself into writing here at least daily. There was only one major event for today and it is the best news of the week so far! Home.

There was so much confusion as no one seemed to know what the plan was. Since 5 different doctors follow Liam's case no one quite knew who was keeping us there so long. Each one thought we were still there because another was waiting for some results or changes. Its that lack of communication and attention to details that made up the differences between being in the ICU and the regular hospital (or GenPop as I called it). Its quiet. As all of our experience in the hospitals were in the ICU, we weren't ready for the quiet. Less equipment running, less monitors beeping, less ventilators breathing. Quiet. I was also surprised by how little we saw of our nurse. Without sounding cocky - aside from starting an IV - there is nothing that a nurse would do for him that Karin and I have not been doing for months. We went close to 4 hours without seeing a single nurse today. Don't get me wrong I am not in any way saying that the nurses themselves were the problem. They were all knowledgeable and helpful when they could be but the job is simply different than ICU nursing. Instead of 2 patients per nurse in the NICU/PICU, I think the ratio was closer to 6 to 1 up on the regular floor. The nurses were relieved to have a set of parents as knowledgeable and as independent as we were because it left less work for them. All the more reason we should have been home. If we have no use for the nurses why did we need to be there? Well Karin and I made enough noise for them to just give up and say get out of here. We didn't need to be told twice. We were in the car about 20 minutes later.

The pediatrician has been called. Nurses won't start coming until Thursday because we need some time alone first. He is in tip-top shape and we are ready to start our third experiment in home living. I'll post pics when they're ready and I plan on posting some long pieces soon. Expect tweaks to the layout and design of the site too. There's lots happening here so make sure you tell your friends to visit.

Liam is sleeping comfortably and I don't see why I shouldn't do the same.

Night all.