We've taken 430 pictures since January 29th-um, that's a lot for us. Some highlights here:
http://picasaweb.google.com/tosertater/PicturesSince129
Wednesday, March 26, 2008
Great-er Tater
So, Tater's birthday is this coming Monday. I CANNOT believe how both fast and slow this year has been. Some days I don't remember because there was so much going on and each day was a blur. Some days I remember all too well (good and bad) because they seemed to go on forever. But all in all, it's been a good year. Last March 31st was a horrible day. Of course it was good in that we had Tater but the news we got seemed to be so devastating. No one could give us answers-Tater wasn't doing good and that's all anyone knew. We were in such a fog and weren't really sure if we wanted answers at the time. Our families NEEDED answers and we were pulled between wanting to know everything and not wanting to know too much and then trying to explain all that we found out to everyone else. Everyone was confused and scared-just thinking about all of it now gives me a lump in my stomach. It was something no one should ever go through but I do think those first few weeks proved to us we can make it through uncertain times and that knowledge has come in handy since.
We made it through the year! My first idea for celebrating how far Tater and the rest of us have come is to throw a huge keg party. How else to celebrate getting through stress than with beer?! But then I remembered how I can't have more than one beer before I fall asleep and that wouldn't be much fun. So of course the next logical step in my crazy mind was figuring out how can we pay tribute to the people who have gotten us and this wonderful little fighter we have to this point and I thought-"Why not beg for money?"
Not for us but for the Huntsville Hospital for Women and Children's Pediatric Intensive Care Unit. That place and the people there mean the world to us. They truly became part of our family the 6 weeks Tater was there and we love them all so much. They are the best of the best when it comes to health care professionals. We would not have made it emotionally without their support. Tater would not be the healthiest kid most people have seen on a vent without their care. They deserve more than praise-they deserve things that will make their difficult jobs easier.
So, you see that nifty little green button at the top left of this page? It's a link that will take you to Tater's Birthday fund page on the Huntsville Hospital Foundation's Onlinelifeline.org site. Directions for how to donate to the PICU are on the page and we appreciate you helping us out with this very, very much. Huntsville Hospital is a not for-profit hospital and they depend on donations to get the little extras that make things easier in stressful situations. If we could raise enough money to buy a little something in Tater's name for the PICU, I know they will greatly appreciate it. And we might be able to keep our reign as the best family ever to be in the PICU (our self-appointed title mind you-we like to prop ourselves up like that).
Of course, I'm begging without any sense of entitlement. And I would hate for any of you to think we expect this of you. It's something that's there if you would like to do it and if you don't that's fine by us. Thanks!
We made it through the year! My first idea for celebrating how far Tater and the rest of us have come is to throw a huge keg party. How else to celebrate getting through stress than with beer?! But then I remembered how I can't have more than one beer before I fall asleep and that wouldn't be much fun. So of course the next logical step in my crazy mind was figuring out how can we pay tribute to the people who have gotten us and this wonderful little fighter we have to this point and I thought-"Why not beg for money?"
Not for us but for the Huntsville Hospital for Women and Children's Pediatric Intensive Care Unit. That place and the people there mean the world to us. They truly became part of our family the 6 weeks Tater was there and we love them all so much. They are the best of the best when it comes to health care professionals. We would not have made it emotionally without their support. Tater would not be the healthiest kid most people have seen on a vent without their care. They deserve more than praise-they deserve things that will make their difficult jobs easier.
So, you see that nifty little green button at the top left of this page? It's a link that will take you to Tater's Birthday fund page on the Huntsville Hospital Foundation's Onlinelifeline.org site. Directions for how to donate to the PICU are on the page and we appreciate you helping us out with this very, very much. Huntsville Hospital is a not for-profit hospital and they depend on donations to get the little extras that make things easier in stressful situations. If we could raise enough money to buy a little something in Tater's name for the PICU, I know they will greatly appreciate it. And we might be able to keep our reign as the best family ever to be in the PICU (our self-appointed title mind you-we like to prop ourselves up like that).
Of course, I'm begging without any sense of entitlement. And I would hate for any of you to think we expect this of you. It's something that's there if you would like to do it and if you don't that's fine by us. Thanks!
Monday, March 17, 2008
Orientation
We had orientation for the home vent program today. We got a layout of classes, what to expect and an overview of the program. We met with the vent program nurse, social worker and doctor (who is already one of Tater's docs from sleep clinic). Everyone is super nice and knowledgeable. We'll be doing 3 classes/week and should be done in about 4 weeks. We'll have to prove we can go home and deal with all kinds of emergency situations and do all the care, etc. We're pretty confident we'll pass all the tests because we've been so involved with Tater's care from day one.
It's sad they expect parents to not know much about their child's care. The reality is, we're in the minority in staying with Tater 24/7 and being so involved. The nurses here (and at the PICU at home) have said it's not unusual for parents to just "visit" and not know much about how to take care of their "technology dependent" child. Most of the time parents can't be here because of financial reasons and they have to work-a lot of times it's because they don't have transportation or because they have other kids at home and no one to care for them.
No matter the reason, knowing there are kids here without their parents makes me realize how good we have it. Of course Mr. Awesome can't work that much being in Bham but he will have a job when this is all over and many people wouldn't be able to say that. Mr. Awesome's employers are the most caring people in the world and everyone there is like family to us. We hate being away from Toser but we know he's having fun and is getting an opportunity he wouldn't otherwise have to be with his extended family. He's having a ball and although he misses us and we miss him like crazy, he's smart enough to know life is pretty good with the spoilage right now.
This whole thing sucks hairy donkey balls but it has made us closer and stronger and have a sense of appreciation that we probably wouldn't have if things were different. And Tater is the most amazing kid. I'm honored to be able to take care of him. Not that I'm a martyr and asked for any of this-it's really hard and discouraging sometimes and most of the time I'm exhausted-but having Tater in my life makes me look at things in a clearer light and understand things that I wouldn't be able to fathom in my "old" life.
You guys have gone too long without some of my sap-so there's your sap for today. One really cool thing about all this is that we'll get put on a priority list for power and utility outages. Y'all totally want to live on our street so you'll get your power back before anyone else does. Of course, living where we do kind of makes such outages a bit more common than the average place but still. We're still excited about the "priority list." And yes, Mountain Mamas, we're having a playdate at my house if the power goes out. :)
It's sad they expect parents to not know much about their child's care. The reality is, we're in the minority in staying with Tater 24/7 and being so involved. The nurses here (and at the PICU at home) have said it's not unusual for parents to just "visit" and not know much about how to take care of their "technology dependent" child. Most of the time parents can't be here because of financial reasons and they have to work-a lot of times it's because they don't have transportation or because they have other kids at home and no one to care for them.
No matter the reason, knowing there are kids here without their parents makes me realize how good we have it. Of course Mr. Awesome can't work that much being in Bham but he will have a job when this is all over and many people wouldn't be able to say that. Mr. Awesome's employers are the most caring people in the world and everyone there is like family to us. We hate being away from Toser but we know he's having fun and is getting an opportunity he wouldn't otherwise have to be with his extended family. He's having a ball and although he misses us and we miss him like crazy, he's smart enough to know life is pretty good with the spoilage right now.
This whole thing sucks hairy donkey balls but it has made us closer and stronger and have a sense of appreciation that we probably wouldn't have if things were different. And Tater is the most amazing kid. I'm honored to be able to take care of him. Not that I'm a martyr and asked for any of this-it's really hard and discouraging sometimes and most of the time I'm exhausted-but having Tater in my life makes me look at things in a clearer light and understand things that I wouldn't be able to fathom in my "old" life.
You guys have gone too long without some of my sap-so there's your sap for today. One really cool thing about all this is that we'll get put on a priority list for power and utility outages. Y'all totally want to live on our street so you'll get your power back before anyone else does. Of course, living where we do kind of makes such outages a bit more common than the average place but still. We're still excited about the "priority list." And yes, Mountain Mamas, we're having a playdate at my house if the power goes out. :)
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