Thursday, July 29, 2010

Time for a change.

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 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.

Sunday, July 25, 2010

Flotsam & Jetsam

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 MartinKurt 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.

Saturday, July 24, 2010

Why watch Boston Med when we can live it?

"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...

Tuesday, July 20, 2010

Edward and Jacob are no match for him.

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.

Sunday, July 18, 2010

Life in Quarantine - The Fully Sick Rapper

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.

Saturday, July 17, 2010

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

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.

Sunday, July 11, 2010

New look, same excuses.

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.

Thursday, July 8, 2010

Bobby Mcferrin can control your voice too.

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.

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.

Saturday, June 19, 2010

I've seen it work on other blogs.

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.

Tuesday, June 15, 2010

Eating calories instead of burning them.

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.

Saturday, June 12, 2010

bad blogger.

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.

Tuesday, May 25, 2010

Saying hi to swingsets.

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.

Thursday, May 20, 2010


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.

Sunday, May 16, 2010

The Back 40.

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.

Monday, May 10, 2010

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

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.

Tuesday, April 27, 2010

The March

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.

Sunday, April 25, 2010

Pre-Walk Walk

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.


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!

Saturday, April 24, 2010

Forward March

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.

Thursday, April 22, 2010

Play Ball II

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!

Tuesday, April 20, 2010

New Stroller Weekend

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.

Sunday, April 18, 2010

Play Ball

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.

Tuesday, April 13, 2010

Gold Star Day.

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.

Sunday, April 11, 2010

Long week.

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

Tuesday, April 6, 2010

In the Hospital.

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.


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


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.


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.

Saturday, April 3, 2010

It has sprung all right.

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.

Thursday, April 1, 2010

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.

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

Tuesday, March 30, 2010

Same old song and dance.

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.

Friday, March 26, 2010

Crazy Week, Boring Blog Post.

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.

Sunday, March 21, 2010


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.

Thursday, March 18, 2010

Oh, The Joys.

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.

Wednesday, March 17, 2010

St. Patrick's Day

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.

Saturday, March 13, 2010

Too much information.

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

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

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

How many of you out there remember this little ditty?

Thursday, March 11, 2010

You feeling Lucky? Well are ya?

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

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

Saturday, March 6, 2010

The Days are Just Packed.

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

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

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

Wednesday, March 3, 2010

And what a voice it is.

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

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

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

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