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 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.

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.