The use of the desktop blogging service Zoundry Raven is not going well which is a crying shame because I absolutley love the user interface. If it would actually post to the blog then we'd be all set. I'm being a very bad boy and posting this from work but I hope to have all of my technical difficulties worked out soon.
By the way, Liam is doing wonderfully even if he is a bit groggy as he gets used to his new seizure med. It appears to be working (please knock on wood for me when you read that) but it will take some time for him to adjust and not be so sleepy all the time. He had a nice visit from some of his NICU nurses yesterday and he loves it when his Uncle Phil and Aunt Jannah are in town from Chicago.
And now, work.
Sunday, November 29, 2009
Zoundry Raven
Trying to use a new free desktop blogging client called Zoundry Raven without much success. I like the UI for the app but it is proving difficult to actually post. Trying this test to see if its because of the images.
Saturday, November 28, 2009
A year without holidays
The title is true, it has been a year without holidays. All of the previous holidays of 2009 were spent in the hospital and although now home Thanksgiving was no event either. Karin and Liam stayed home while I went to work. My mother had all of the family over at her house but the crowd and so many people travelling from all over the region means waay too many germs for a visit from the baby. He did have a few visitors at home though. The most important being his Uncle Phil and Aunt Jannah who drove in from Chicago in a rented Smart Car. (they made quite a splash with the car when they parked it facing the road because there wasn't any space long enough to parallel park.)
I missed it all of course while working all day at a place that makes me miserable. Awesome.
The Wife did send me an awesome photo that she took with her phone to cheer me up. Check it...
Uncle Phil brought with him his latest homebrew. Liam's Lager was brewed with yesterday in mind as its first drinkable day. It has been aged 154 days, or the same amount of time that Liam spent in the NICU. I will post pictures tomorrow of the bottled product as the labels contain a truly bitchin logo designed and drawn by Liam's Aunt Jannah. (yeah that's right, I use the term bitchin. deal with it.) The beer is delicious which didn't surprise me, as all of my brother's brews that I've tried have been good, but this one is fantastic. Karin loved it too and she is not the biggest beer fan in the world.
As far as Liam updates go there isn't much to tell. He's freaking awesome. Nuff said.
The Sandman series continues to be my only reading although I'm hoping to hit the library before Monday. I added a Goodreads widget to the right that will always show what I'm reading. I think the Goodreads site is fun but I don't have enough friends to get recommendations from so if you know anyone on Goodreads let me know.
Its been linked to everywhere but this is a great interview with Cormac McCarthy about The Road as novel and movie. I loved this book. I read it on the plane ride to Chicago last year and had to stop to cry a number of times. The relationship between father and son hit me hard as I was expecting the birth of a son myself. Which is why I am conflicted about the upcoming movie. There is a big part of me that is excited to see Viggo in the role of the Man but I am terrified that it will fall completely flat and tarnish my view of the story itself. If its OK that's one thing but if it truly falls flat will those images replace my vision of the great apocalyptic tale? Whatever -- I haven't seen a movie in the theater in over a year its pretty silly to think I'd start now. I have time to put this decision off. Just go read the book before you see the movie alright? Good.
Lately I've noticed that when I'm at home I don't even notice the noise of Liam's ventilator but when I'm anywhere else all I can notice is its absence. I don't exactly miss it but I can't help but notice its not there. Its hard to explain.
As I type this post the Foo Fighters have been playing on the VH1 Storytellers show. First of all, where do they get off being together for 15 years now?? 15 years? Damn I'm old. Anyway, how is it that I have not seen these guys live yet. Seems that they put on one hell of a good live performance. Damn these guys are good.
And now, sleep.
I missed it all of course while working all day at a place that makes me miserable. Awesome.
The Wife did send me an awesome photo that she took with her phone to cheer me up. Check it...
Uncle Phil brought with him his latest homebrew. Liam's Lager was brewed with yesterday in mind as its first drinkable day. It has been aged 154 days, or the same amount of time that Liam spent in the NICU. I will post pictures tomorrow of the bottled product as the labels contain a truly bitchin logo designed and drawn by Liam's Aunt Jannah. (yeah that's right, I use the term bitchin. deal with it.) The beer is delicious which didn't surprise me, as all of my brother's brews that I've tried have been good, but this one is fantastic. Karin loved it too and she is not the biggest beer fan in the world.
As far as Liam updates go there isn't much to tell. He's freaking awesome. Nuff said.
The Sandman series continues to be my only reading although I'm hoping to hit the library before Monday. I added a Goodreads widget to the right that will always show what I'm reading. I think the Goodreads site is fun but I don't have enough friends to get recommendations from so if you know anyone on Goodreads let me know.
Its been linked to everywhere but this is a great interview with Cormac McCarthy about The Road as novel and movie. I loved this book. I read it on the plane ride to Chicago last year and had to stop to cry a number of times. The relationship between father and son hit me hard as I was expecting the birth of a son myself. Which is why I am conflicted about the upcoming movie. There is a big part of me that is excited to see Viggo in the role of the Man but I am terrified that it will fall completely flat and tarnish my view of the story itself. If its OK that's one thing but if it truly falls flat will those images replace my vision of the great apocalyptic tale? Whatever -- I haven't seen a movie in the theater in over a year its pretty silly to think I'd start now. I have time to put this decision off. Just go read the book before you see the movie alright? Good.
Lately I've noticed that when I'm at home I don't even notice the noise of Liam's ventilator but when I'm anywhere else all I can notice is its absence. I don't exactly miss it but I can't help but notice its not there. Its hard to explain.
As I type this post the Foo Fighters have been playing on the VH1 Storytellers show. First of all, where do they get off being together for 15 years now?? 15 years? Damn I'm old. Anyway, how is it that I have not seen these guys live yet. Seems that they put on one hell of a good live performance. Damn these guys are good.
And now, sleep.
Saturday, November 21, 2009
All seizures all the time!
It's been an extremely long week. I will try to recap...
Monday -- Liam has his longest and most severe seizure needing Diastat to break him out of it. We also notice that his seizure activities were starting to change. Rather than one strong event these were looking like a cluster of many, many short seizures over 15 to 20 minutes. I mention to Karin that this must be infantile spasms. A common type of seizure for kids with Liam's syndrome.
Tuesday -- A few more seizures that seem to upset Liam more. Neurology contacted but not much they can do until we see the doctor on Wednesday morning. In wonderful timing on Liam's part the appointment was made months ago. Also Karin gets deeper and deeper into a battle with the insurance company over a very, very important drug that we were already told would be covered but now they're dragging their feet.
Wednesday -- Doctor's appointments in the morning. First with pulmonology who were very happy with Liam's progress. No changes to vent settings. Then with Neurology who spent almost an hour talking with us about the seizures. He diagnosed the small clusters as infantile spasms pending an EEG for Thursday. The treatment will involve many eye exams in Boston to watch for a side effect that can damage the eyes. Liam's eyes are already damaged enough but the other treatment's side effects are even worse and the decision was a no-brainer. In the afternoon Karin continues her battle with insurance as they continue to drag their feet on a treatment that could potentially leave Liam susceptible to a life threatening illness. I'll get into why you're wrong if you're against health care reform in a later post, this post is supposed to be about Liam.
Thursday -- Get the whole family out the door bright and early to get to the hospital at 7:30am. EEG nurses are friendly and efficient and we are quickly processed and they fix the sensors to Liam's scalp. The test can last as long as 6 hours but we were hoping that Liam would help a little by showing us everything we needed to see. He did. He stayed awake for about twenty minutes, he slept for about twenty minutes and then he had one of his seizures for about twenty minutes. After it was through the nurses said they had everything we needed and sent us home. Liam was tired and slept most of the day. He has been sleeping most days this week as the seizures have taken a lot out of him. It has been difficult but we (mostly Mom while I'm at work) have done a good job of making sure he does all his physical therapy each afternoon. More phone calls to insurance companies, doctors offices, and pharmacies. Being Liam's Secretary is a full time job in itself.
Friday -- The doctor calls to tell us that the EEG results confirm his (and my) diagnosis and we need to get into his office quickly to sign all the paperwork to start treatment. Karin drops me off at work and heads there while we have the nurse in the morning. Liam is having more spasms but they seem to be less intense. We all hope that the treatment we have chosen works and works fast. The insurance company officially says no to the other treatment I mentioned. There are no alternatives and it is a med that Liam must have. It costs a little over $2000 dollars a month but luckily the state will be picking up the tab. Because Liam was born so small he qualifies for state aide which is the only way this family would survive. All companies and offices called and confirmed and we should have the med soon. Hopefully by Monday.
Through all that we also had our non-Liam stresses and obstacles. Sleep has been scarce and we haven't been eating well or exercising. My work sucks and I haven't done much reading and even less writing. Through it all, Liam has given us both so many smiles, hugs, and kisses. In one glance Liam can make all the headaches, the frustration and the aggravation melt away and be forgotten. Without him in our lives we may have a bit more free time and a little less stress but I wouldn't trade it for the world. Its truly a small price to pay for the joy that Liam brings to my heart each and every time I see him, hold him, or even think of him.
Posting to (hopefully) resume a somewhat consistent schedule. The In-laws visit tomorrow and I'm hearing good things about the weather. Things are looking up!
Monday -- Liam has his longest and most severe seizure needing Diastat to break him out of it. We also notice that his seizure activities were starting to change. Rather than one strong event these were looking like a cluster of many, many short seizures over 15 to 20 minutes. I mention to Karin that this must be infantile spasms. A common type of seizure for kids with Liam's syndrome.
Tuesday -- A few more seizures that seem to upset Liam more. Neurology contacted but not much they can do until we see the doctor on Wednesday morning. In wonderful timing on Liam's part the appointment was made months ago. Also Karin gets deeper and deeper into a battle with the insurance company over a very, very important drug that we were already told would be covered but now they're dragging their feet.
Wednesday -- Doctor's appointments in the morning. First with pulmonology who were very happy with Liam's progress. No changes to vent settings. Then with Neurology who spent almost an hour talking with us about the seizures. He diagnosed the small clusters as infantile spasms pending an EEG for Thursday. The treatment will involve many eye exams in Boston to watch for a side effect that can damage the eyes. Liam's eyes are already damaged enough but the other treatment's side effects are even worse and the decision was a no-brainer. In the afternoon Karin continues her battle with insurance as they continue to drag their feet on a treatment that could potentially leave Liam susceptible to a life threatening illness. I'll get into why you're wrong if you're against health care reform in a later post, this post is supposed to be about Liam.
Thursday -- Get the whole family out the door bright and early to get to the hospital at 7:30am. EEG nurses are friendly and efficient and we are quickly processed and they fix the sensors to Liam's scalp. The test can last as long as 6 hours but we were hoping that Liam would help a little by showing us everything we needed to see. He did. He stayed awake for about twenty minutes, he slept for about twenty minutes and then he had one of his seizures for about twenty minutes. After it was through the nurses said they had everything we needed and sent us home. Liam was tired and slept most of the day. He has been sleeping most days this week as the seizures have taken a lot out of him. It has been difficult but we (mostly Mom while I'm at work) have done a good job of making sure he does all his physical therapy each afternoon. More phone calls to insurance companies, doctors offices, and pharmacies. Being Liam's Secretary is a full time job in itself.
Friday -- The doctor calls to tell us that the EEG results confirm his (and my) diagnosis and we need to get into his office quickly to sign all the paperwork to start treatment. Karin drops me off at work and heads there while we have the nurse in the morning. Liam is having more spasms but they seem to be less intense. We all hope that the treatment we have chosen works and works fast. The insurance company officially says no to the other treatment I mentioned. There are no alternatives and it is a med that Liam must have. It costs a little over $2000 dollars a month but luckily the state will be picking up the tab. Because Liam was born so small he qualifies for state aide which is the only way this family would survive. All companies and offices called and confirmed and we should have the med soon. Hopefully by Monday.
Through all that we also had our non-Liam stresses and obstacles. Sleep has been scarce and we haven't been eating well or exercising. My work sucks and I haven't done much reading and even less writing. Through it all, Liam has given us both so many smiles, hugs, and kisses. In one glance Liam can make all the headaches, the frustration and the aggravation melt away and be forgotten. Without him in our lives we may have a bit more free time and a little less stress but I wouldn't trade it for the world. Its truly a small price to pay for the joy that Liam brings to my heart each and every time I see him, hold him, or even think of him.
Posting to (hopefully) resume a somewhat consistent schedule. The In-laws visit tomorrow and I'm hearing good things about the weather. Things are looking up!
Tuesday, November 17, 2009
We'll call them blog McNuggets.
I still wake up in the dark of the night and the first thing I think to myself is - "I gotta call the hospital and check on Liam!" Even if he's right next to me. It happens a lot more often than I'd like to admit.
The seizures seemed to only get worse as the week and ultimately the weekend went on; with a grand finale of a seizure this morning just after I left for work. This one lasted about five minutes and for the first time he needed a diastat shot to break him from it. He slept for the rest of the day (you would too after a shot of valium like that) while Karin contacted his neurologist and got the new doses for his meds. We increased a dose of medicine and will be seeing the doctor on wednesday morning anyway. The appointment was actually made months ago so Liam's timing couldn't be better. He has been fine all day and all night but I hesitate to expand on that as it would be what we call - tempting fate. (yes, of course I'm knocking on wood as I type this.)
The big move to the second floor is still in progress but we are into the nitty gritty details now. Our space upstairs feels comfortable and welcoming and is a small escape from nurses and visitors. When your house feels like a clinic a nice quiet room is all you really need.
Liam continues to get bigger and bigger as I think I forgot to mention that at his last pediatricians appointment the big guy weighed in at 19 lbs. 12 oz. !!!! My little chubs.
We're all gonna pretend that last night's patriots/colts game just never happened K?
The Sandman Series is everything I hoped it would be. Great, now I have to go out and buy all the books.
The neighbors across the way set up their Christmas lights last night and a gauntlet has been thrown down. One that we simply can't compete with. Lights everywhere, an inflatable snowman and not only a large inflatable Santa Claus but also a large inflatable reindeer dressed like Santa Claus. They did a good job and it pleases us that we can see it all from the couch.
I'm hoping that the Redbox gets the new Star Trek movie quickly. We haven't been to a movie all year and so I have a lot of catching up to do. The Hangover, Inglorious Basterds, District 9, and Where the Wild Things Are are on the list too. I'm beside myself with excitement for Viggo in The Road too.
Liam decided to stay up all night tonight! Yay! So here it is 3am and he is still awake. Good thing we have no early appointments tomorrow. He may still be awake but I'm fading fast. Couch next to his crib is always comfortable enough for me, even if it is about 6 inches less wide than I am tall.
Night all.
The seizures seemed to only get worse as the week and ultimately the weekend went on; with a grand finale of a seizure this morning just after I left for work. This one lasted about five minutes and for the first time he needed a diastat shot to break him from it. He slept for the rest of the day (you would too after a shot of valium like that) while Karin contacted his neurologist and got the new doses for his meds. We increased a dose of medicine and will be seeing the doctor on wednesday morning anyway. The appointment was actually made months ago so Liam's timing couldn't be better. He has been fine all day and all night but I hesitate to expand on that as it would be what we call - tempting fate. (yes, of course I'm knocking on wood as I type this.)
The big move to the second floor is still in progress but we are into the nitty gritty details now. Our space upstairs feels comfortable and welcoming and is a small escape from nurses and visitors. When your house feels like a clinic a nice quiet room is all you really need.
Liam continues to get bigger and bigger as I think I forgot to mention that at his last pediatricians appointment the big guy weighed in at 19 lbs. 12 oz. !!!! My little chubs.
We're all gonna pretend that last night's patriots/colts game just never happened K?
The Sandman Series is everything I hoped it would be. Great, now I have to go out and buy all the books.
The neighbors across the way set up their Christmas lights last night and a gauntlet has been thrown down. One that we simply can't compete with. Lights everywhere, an inflatable snowman and not only a large inflatable Santa Claus but also a large inflatable reindeer dressed like Santa Claus. They did a good job and it pleases us that we can see it all from the couch.
I'm hoping that the Redbox gets the new Star Trek movie quickly. We haven't been to a movie all year and so I have a lot of catching up to do. The Hangover, Inglorious Basterds, District 9, and Where the Wild Things Are are on the list too. I'm beside myself with excitement for Viggo in The Road too.
Liam decided to stay up all night tonight! Yay! So here it is 3am and he is still awake. Good thing we have no early appointments tomorrow. He may still be awake but I'm fading fast. Couch next to his crib is always comfortable enough for me, even if it is about 6 inches less wide than I am tall.
Night all.
Sunday, November 15, 2009
Is it still legal to write something without mentioning Vampires?
Firstly, a quick note about the photos. I used to take a lot of pictures. I mean lots of pictures. I got pretty good at I think, but I stopped for close to 6 months as I spent more time in a hospital than out of it. As a result I am very off of my game. Instead of RAW I have gone back to using JPEGs because I haven't even unpacked my desktop computer that I do all of my photoediting on. We moved in April. Not wanting to clog up the laptop that both Karin and I use all of my edits to the photos posted here have been done in Picassa. Which is a great tool for photo organizing but shit for editing. I hope to have that fixed by the end of tomorrow and so I hope that the quality of the images here will improve. I try not to rely on my software to fix photos but I do like finer controls on setting my levels and white balance as well as better sharpening tools.
In a related story Karin and I made wonderful progress on our relocation to the second floor today. We'll be sleeping up there tonight, taking turns of course. Tomorrow the "office" side of the floor will be finished (hopefully). My mother helped a great deal by babysitting for us. Her expression when we asked her to babysit was priceless. It is one of the hardest parts of Liam's medical needs that we can't call on those closest to us to help take care of him. Even though we never left the house having someone there to hold him and engage his attention freed Karin and I to get some serious work done. After a day of moving furniture, organizing medical supplies and unopened boxes from the move Karin and I sat back and admired our accomplishment. We looked around our new room and at each other when she said it. "You're going to write your book in this room." She said with a smile. She's absolutely right and I am so happy she pointed it out to me.
The Vent. I talk about it enough and today it occured to me that I should put up a pictures so you could see what I'm talking about. This is Liam's LTV (or LapTop Vent) 950. It is his stationary vent. It is on wheels and so not exactly stationary but it stays in the house rolling between his bedroom and the living room. It is hooked up on one side to an enormous liquid oxygen tank and on the other to a heater/humidifier before ending up hooked to Liam. The blue velcro straps taped to its front are a template for Liam's trach ties. These small straps are changed daily and hold Liam's trach in by connecting around his neck. They need to be cut precisely to fit and so the template helps us do that quickly. Liam has another vent for traveling that does not have a big stand with wheels but comes in a backpack for ease of carrying (typing that just made me laugh out loud).
Here is his vent set up next to Liam's Pac-N-Play. This setup is for when he is in the living room with us. Most of that time is spent on the floor or in his new Special Tomato which is a piece of physical therapy equipment helping him sit upright. When he needs to lay down for a break or for naps he lays in this. The small blue box on the stand to the left is his feeding pump. The blanket hanging over the banister was the covering that would be draped over his isolette (formerly known as an incubator) to give him darkness when he was in the NICU. The small patch of orange fuzz sticking out of the pac-N-Play is Levon the Lion. Liam's favorite toy in the world.
Liam loves his circuit. He can often be found holding onto his circuit while sleeping. I think he knows that they are there to help him. Before he got his trach we heard that babies love to pull their tubes off but Liam has never tried. He's disconnected himself when the tube gets caught on his foot, but he's never done it on purpose. If you just read that outloud please knock on wood for me. All we need is for Liam to figure out that if he pulls it off alarms will sound and parents and nurses will come running. Its a pretty good way for him to get attention.
This is the Special Tomato mentioned above. I think it makes him look like a fighter jet pilot. He fights it for a few minutes but once he realizes that we aren't going to take him out he gets over it and goes to sleep. The frog toy is an Eric Carle toy and as soon as Liam woke up and saw it there he smacked it across the room. Make a note: Liam does not like frogs.
Am I the only one who kept thinking "why the hell are all these lists coming out about the best of the decade?" for weeks before realizing that we are less than 2 months away from 2010?? 2010?? Really? That does not seem possible.
Pictures of terrifying scarecrows. The fourth one down is awesome.
Saw this in a bunch of places already but still think its cool. A flow chart of Hey Jude.
Film clips from TV, and movies that come together into a wonderful song. Just watch it because its hard to describe. The time it must have taken to make this is impressive.
Internal clock has gown so screwy that I am sitting here at 3:10am and I am wide awake. Picked up the 3rd, 4th, and 5th volumes of the Sandman collection from the library yesterday. Going to read until Karin wakes up to relieve me of my post in a few hours.
Night all.
In a related story Karin and I made wonderful progress on our relocation to the second floor today. We'll be sleeping up there tonight, taking turns of course. Tomorrow the "office" side of the floor will be finished (hopefully). My mother helped a great deal by babysitting for us. Her expression when we asked her to babysit was priceless. It is one of the hardest parts of Liam's medical needs that we can't call on those closest to us to help take care of him. Even though we never left the house having someone there to hold him and engage his attention freed Karin and I to get some serious work done. After a day of moving furniture, organizing medical supplies and unopened boxes from the move Karin and I sat back and admired our accomplishment. We looked around our new room and at each other when she said it. "You're going to write your book in this room." She said with a smile. She's absolutely right and I am so happy she pointed it out to me.
The Vent. I talk about it enough and today it occured to me that I should put up a pictures so you could see what I'm talking about. This is Liam's LTV (or LapTop Vent) 950. It is his stationary vent. It is on wheels and so not exactly stationary but it stays in the house rolling between his bedroom and the living room. It is hooked up on one side to an enormous liquid oxygen tank and on the other to a heater/humidifier before ending up hooked to Liam. The blue velcro straps taped to its front are a template for Liam's trach ties. These small straps are changed daily and hold Liam's trach in by connecting around his neck. They need to be cut precisely to fit and so the template helps us do that quickly. Liam has another vent for traveling that does not have a big stand with wheels but comes in a backpack for ease of carrying (typing that just made me laugh out loud).
Here is his vent set up next to Liam's Pac-N-Play. This setup is for when he is in the living room with us. Most of that time is spent on the floor or in his new Special Tomato which is a piece of physical therapy equipment helping him sit upright. When he needs to lay down for a break or for naps he lays in this. The small blue box on the stand to the left is his feeding pump. The blanket hanging over the banister was the covering that would be draped over his isolette (formerly known as an incubator) to give him darkness when he was in the NICU. The small patch of orange fuzz sticking out of the pac-N-Play is Levon the Lion. Liam's favorite toy in the world.
Liam loves his circuit. He can often be found holding onto his circuit while sleeping. I think he knows that they are there to help him. Before he got his trach we heard that babies love to pull their tubes off but Liam has never tried. He's disconnected himself when the tube gets caught on his foot, but he's never done it on purpose. If you just read that outloud please knock on wood for me. All we need is for Liam to figure out that if he pulls it off alarms will sound and parents and nurses will come running. Its a pretty good way for him to get attention.
This is the Special Tomato mentioned above. I think it makes him look like a fighter jet pilot. He fights it for a few minutes but once he realizes that we aren't going to take him out he gets over it and goes to sleep. The frog toy is an Eric Carle toy and as soon as Liam woke up and saw it there he smacked it across the room. Make a note: Liam does not like frogs.Am I the only one who kept thinking "why the hell are all these lists coming out about the best of the decade?" for weeks before realizing that we are less than 2 months away from 2010?? 2010?? Really? That does not seem possible.
Pictures of terrifying scarecrows. The fourth one down is awesome.
Saw this in a bunch of places already but still think its cool. A flow chart of Hey Jude.
Film clips from TV, and movies that come together into a wonderful song. Just watch it because its hard to describe. The time it must have taken to make this is impressive.
Internal clock has gown so screwy that I am sitting here at 3:10am and I am wide awake. Picked up the 3rd, 4th, and 5th volumes of the Sandman collection from the library yesterday. Going to read until Karin wakes up to relieve me of my post in a few hours.
Night all.
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