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.