Katie
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Comments posted here are about the content posted at http://www.sqlservercentral.com/columnists/pressrelease/3095.asp
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I noticed after clicking "Buy a Ticket" that your eWebCart only accepts credit cards (V, MC, AE) or a purchase order. Is there any chance you guys could add PayPal to that list? I feel it would significantly increase the odds of receiving donations or similar small payments.
Just a humble suggestion.
- Chris
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The cart is set up, but if you want to make a donation here: http://www.readytogiveup.com/, add a note that it came from SQLServerCentral and we'll get you in the raffle.
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Some people have asked me a few questions, so I'll provide a couple updates here.
First, I've asked Rex for a more recent update on Katie, so as soon as he gets his day going, we'll sort that out.
Second, none of the money from the raffle will be used for expenses, meaning one of the corporate sponsors will eat the costs. All the donations, # tickets x $10 goes to the Winns.
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Wow. I had heart surgery when I was 18 months old and I can't imagine what my parents went through prior to that. Reading what her parents have gone through is simply heartbreaking. She has my sympathy and she'll have some dollars when I get home from work tonight.
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[font="Arial"]Knowledge is of two kinds. We know a subject ourselves or we know where we can find information upon it. --Samuel Johnson[/font] -
I'm the father of Katie Winn and before I do anything else let me first say thank you to all of you and especially Steve Jones and SQLServerCentral for doing this on Katie's behalf. I say Katie's behalf because it's important for me to remember that she's why I'm doing this. It's been very challenging but I have to do it for her and it that's what matters.
Steve has asked for an update and where better a place to put one than right here. (Steve, feel free to move this wherever you think it works best.) Also some of you may wonder why I've tucked a lot of the site away behind the media relations link. To be honest I just didn't feel like it was working. Prior to Steve's announcement here I wasn't getting a single donation in the last 9 days. I was taking some flack as being a scammer and a guy I respect at Code Project really go me thinking about how I wanted to do this. The news in this is that I'm going to be adjusting the site a lot and gradually I think I'm going to polish it a lot. I'm a Software Engineer a husband and a father. I'm not a desperate cry for attention and I think the site that is currently tucked away kind of has that feel to it. Oh poor me. Rescue me. I don't like that. I want to make it more informative, less emotional and I need it to get the attention of news and online agencies who have the ability to give me credibility.
UPDATE ON KATIE WINN:
So the site has a lot of information about Katie's condition, her birth and some of the things that have gone on but certainly not everything. I simply don't have time for that as it would take me and HIPAA both a year to wade through all the data.
But I'm going to shoot from my hip and tell you what we know and honestly it's not as much as we'd like to know at all.Katie is now 5 years old and doing so-so. She has a lot going on and we don't understand half of it. For example it's 9:00AM right now our time and she's still in bed. She needs about 11 hours of sleep a night and is still tired when she gets up. For a 5 year old that's crazy. My other two kids at 6 and 2 years of age practically bring down the house after 8 hours of sleep and could power a small city if we put them on a treadmill. So Katie is tired * a lot * and that's been impossible for us to figure out.
We know that she's suffered extensive damage to her small bowel and we know that it's been cut and handled a lot. This handling and surgery makes the possibility of scar tissue and partial obstruction a real possibility and we have to be wary of that. Right now the going theory is that Katie has parts of her bowel that are damaged to the point that they don't contract at all or they contract in the wrong direction. Which parts of her bowel are affected? The short answer is that we don't know. Medically there's no way to measure that here in Boise, Idaho. We need to go to Portland or Seattle but I've been told that Boston would be best. Apparently in Boston they can spend about 30 to 45 days recording data from stem pads placed around her belly that will capture the contractions or lack-there-of from her bowel. They can use this data to begin building statistics and probably attempt to improve it with various foods and such. I don't honestly know. I'm pretty sure it's theoretical medicine and I'm very sure (but I haven't formally asked) that insurance (Social Security Disability Medicaid) won't cover it.
Why haven't I asked? Well I'm self-employed and have no idea how I would afford a 45 day stay in Boston or the costs of the related care. It's just beyond me to fathom that. I think I could move my office there and work short-term but the cost-of-living would be a huge hit. We might be able to stay with some friends but don't know that for sure or for how long.
We have maxed out our local options. Mario M. Brus is her pediatrician and he's the primary care doctor. Ellen Reynolds is her pediatric surgeon and she feels like she has operated and done as much mechanical repair as she can. Henry Thompson is her pediatric gastro-enterologist (SP?) and he's trying things but as of yet nothing has really worked. We are giving her Flagyl for 5 days at the beginning of every month to kill off the major over-population of bad bacteria. Then for the next 25 days we give her a probiotic trying to rebuild the good bacteria that the Flagyl wiped out while killing the bad.
A nutritionist who charges $150 an hour has tried to help us get Katie on a diet that will alleviate some of her symptoms but at $150 an hour we cannot afford to work with her very much as insurance doesn't cover it at all. So Katie has a ton of gas in her small bowel. Skips one meal a day on average because her stomach hurts and has a very watery stool about every 3 to 5 days that wipes her out. We don't have answers to the why and that's kind of what inspired this whole effort on my part.
Now feel free to email me and ask questions r#e#x#@#r#e#a#d#y#t#o#g#i#v#e#u#p#.#c#o#m (remove the #'s) or to call me at 208-353-3183. We can also do some Q & A here in this thread if it's okay with Steve.
But in a nutshell that's kind of where we are at but there's a whole lot more to it that's almost like black magic. We just don't understand a lot of things. Why can we accidentally pull her hair out in clumps when we brush it and other things like that which blow us away.
Best Regards,
Rex Winn
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Rex thanks and if anyone has questions, feel free to post them here.
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I haven't decided if I'm going to buy a ticket yet or not, but I thought I would offer an opinion: If other people are like me (there have to be at least a couple), they're going to be put off by the domain name (readytogiveup.com) -- it just sounds very defeatist. I'm not judging you personally -- I ready your story and I certainly understand that things looked extremely bleak and discouraging. But the name is not good marketing; cleaning products don't mention dirt in their names. Just FYI, I checked and the domain NotAboutToGiveUp is available, which at least sounds a little bit more positive (and sort of describes the Maximus story from Gladiator as well). I also think that in the future, when your daughter is older and doing better and maybe becomes aware of your efforts on her behalf in this arena, it might be better if she sees a different domain name. Just a thought. Good luck, regardless.
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I totally agree. Yesterday I changed http://www.readytogiveup.com/default.aspx. I put up a short letter saying what you are saying.
Some background on the domain. 4 weeks ago I hurt my back really bad (turns out it was a severe muscle spasm) I was in the emergency room all day and they did MRI's and loaded me up with steroids and pain medicine. They sent me home but I couldn't stand or sit for about 7 days. I laid on my back on the floor and got way behind on work. My usual pace is a 80+ hour work week spread out over 7 days. I usually start sometime around 6:30AM.
I laid on the floor for 7 days, slept horribly (not really at all) and one night I was up at 2:30AM kneeling in front of my PC. I posted a "ready to give up" message at codeproject and really wish I hadn't. But at the time I was exhausted, on percocet, in lots of pain and just not feeling super great. I should never have made that post as I had not even talked with my wife before doing it (first reason to not do something). But I did it. The response at CP was overwhelming and you can see evidence of support at codeproject.com all over in people's personal signatures.
Over the next 4 weeks after making it that post I started to get caught up the pain was going down and I was feeling better. I have debated just taking the site down but on talking with some close friends at CP I was told not to and if I did they were going to be furious. I'm not making that up either. About 3.5 weeks into it a guy blasted me about being a scammer and said I was doing illegal things with the site. I took the site down that Sunday night (got totally reamed by people from CP for doing it) but wanted to make sure I was being legal. I called Barry Peters here in Eagle, Idaho and he confirmed it but said I should also call Steve Nipper which I did. I spoke with one other attorney, a friend and he didn't know of anything. So I put the site back up but I hamstrung it. Then yesterday I spent the day with my family and really thought about it. I didn't like the whole idea but I'd kind of come too far to turn back and was sort of stuck. I've emailed Orpah, KTVB here in Boise and some other places and have kind of taken the approach that if I don't get a response in 30 days I'm taking the site down or at least just leaving a note up like I have it.
I'm not ready to give up. When I slept 4 hours a night for 3 years sitting next to Katie making sure she didn't choke on vomit I didn't give up and I'm sure not giving up now. I actually hate that site but I don't know what to do. If I do take it down right now in the face of that recent credibility attack then I do look like a scammer. I'd love to get bona fide help from a place like Oprah Winfrey's show or my local T.V. stations but have yet to hear back from them. Since I have emailed them I need to leave up the site or I look like a scammer. I even look like a scammer to me and that bothers me.
You have a point though. If I do leave the site up changing the domain is a good idea and might sit better with people in general. It won't sit better with me. I don't think I was in the right state of mind to do this to begin with and now that I'm 4 weeks into recovering I feel better and stronger about life. I'm as confused as I could get about what to do and I feel like a TV station or a TV show might be able to give me some really good advice for how to do this better. It's not like I've ever done this before.
I'd really like to move everything over to pediatricparents.com and not just make it about Katie and us but allow parents from all over the place to share about their own children. I want to create a site where each family can have a blog they can make public or private, their own web site for sharing photos and stories and maybe have a public message board where families can share ideas, support and other information to have a community support environment. The only drawback to all of that is that it takes time. I have real paying customers that want me to work on their stuff right now and it's hard to find the time to get pediatricparents.com up and running. Then I need to figure out how to market it. But that's way over the next horizon.
In a nutshell I completely agree with you. I don't like it either but that's because I'm off pain killers, I'm sleeping a bit better and depression is moving off into the horizon. I feel more myself and I feel more like fighting for what matters.
- Rex
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My two year-old daughter has medical issues, some of which we're still seeing specialists for to see if we can try to diagnose why certain problems still exist. It has torn up my wife and me as each new doctor's visit or lab sample brings with it a new round of fear and trepidation. We just had one visit this week with a specialist and we've got another one at the end of the month.
With that said, our daughter has never been close to being in much danger as your daughter has. And some of the issues you describe with her at 5, such as requiring so much sleep and having to miss a meal a day, etc., I can't even imagine facing. You and your wife have been incredibly, unbelievably strong in the face of everything. I'm going to show my wife what you've posted about your daughter and we'll be making a donation. While we may not comprehend the full extent of what your family has gone through, our own slice with our daughter gives us a bit of perspective.
I understand why some may react cynically, One of the questions was, "Why didn't you ask for help earlier?" I can tell those of you asking that question that if you haven't gone through medical visit after visit over your child, that really the only thing you think about is your kid. It's hard to concentrate on other things like finances, obligations, etc. The immediacy of the medical issues are all consuming until they become overwhelming.
K. Brian Kelley
@kbriankelley -
Wow, thank you Brian!
To answer the question, "Why didn't we ask for help sooner?" That's actually been a pretty daunting experience. They detected Katie's problem in the 20 week ultra-sound before she was born. The O.B. saw some gray loops in her bowel that I couldn't tell from the paper but he saw it plain as day and knew what he saw. Immediately we did an amnioscentesis to rule out chromosomal defects and we did the only thing still out there is Cystic Fibrosis. But once we narrowed it down to a small bowel obstruction the O.B. said, "It should be a minor surgery to remove the obstruction and she'll be home in a week." So we thought, "Hey no worries we can do that." The hospital coordinator came around and said, "Do you guys need help with the financial planning of this?" We said, "No, she'll be here a week and we have insurance." (Wish I would have known at that time that Micron would lay me off a year later.) So the care coordinator disappeared never to be seen again.
A bit later that day the Neonatologist comes by the room and says, "Bad news. Katie probably doesn't have enough bowel to live on." We flip out naturally and he says, the laprascopic procedure tonight will confirm the diagnosis and if we're right she'll go home with you and slowly die of starvation you should get a few weeks with her before she dies. Wow! Great!
So we bite nails waiting for the surgery and the surgeon calls and says, "The good news is she has plenty of bowel the bad news is that it's not real healthy." Nobody told us she'd be there for 2 more months. When your child is in the hospital and on life support you really aren't thinking "How am I going to pay for this." When she finally comes home for more than a few days four months later you might start thinking about those things. We didn't get a chance. For the next 8 months she threw up a lot and we were in a fight to keep her alive. We had paramedics over for some late nights. We were almost always up all night taking turns sleeping and finances... Well crap. We were between the house and pediatrics a lot. We were buying formula and skipping meals ourselves. Neither the pediatric surgeon or the pediatrician ever bothered to mention the programs that were out there. We knew we were maxxing out financially but if you know the "Laws of heirarchical needs" very well you'll know that survival tops the list. We were fighting for survival. I remember 1 day after I had foot surgery and was supposed to keep my foot elevated I had to rush Katie to the E.R. walking on my foot to get her there. My foot has never been the same and it's hurt ever since. We were in full on "fight or flight".
Then in October of 2002 we had the G-tube/fundo surgery because Katie was dying and we couldn't deny that anymore. We had to save her life. Even if it means sewing her esophagus so she cannot throw up might mean she cannot have kids because of morning sickness we did what we had to do. We thought after that surgery we would be better off. We weren't. For the next 2 years Katie kept trying to throw up on the same interval if not every day every other day. We were more stressed out than ever before because we now had to pump stuff out of her stomach. Were we thinking about money? Not until I got laid off in 02/2003 then suddenly we were moving in with family and I was desperately trying to find work. At that poing the Pediatric Surgeon says, "Hey have you heard of Katie Beckett?". We were like, "What?" and she explained it to us. We frantically did everything we could to get into that as fast as we could but they don't back date past 90 days. So no real help there (she actually told us about Beckett in 2002...anyway).
Then I thought I had a job for $90,000 a year. But 9 days after they hired me as a 1099 and 7 days after we bought a house they let me go because they lost the contract they hired me to work on. Now we had real money problems. But again life was so fight or flight you don't have time to approach the internet (something you know next to nothing about) and try to drum up help. I tried in 2003 and 2004 you can search codeproject.com for pediatricparents.com but nothing really turned up.
Only now when it's obvious that we are way, way, way over-cooked do we see that we need some help. Only now after working 80 hour weeks for 3 years on ASP .Net sites with SQL Server backends do I know how to use the internet and have a good position at codeproject.com to work from. I have some credibility there. Not a ton because there's no face value and I'm asking for money. Still the visible support has been amazing.
Aside from us being locked in a "fight or flight battle" and hardly having time to think at all from 2001 to 2004 and then me working frantically from 2004 to 2007 to cover the bills we did have... It's been pretty hard to come up with any type of reaction plan. My wife and I have never ever been through anything like this. There is no manual out there that tells you how to prepare and plan for things once you are in a fight for survival. It was very hard to remember to bathe and there were 3 straight years where I bathed about every 3 days on average.
We should have asked for help sooner but where and from who? It was hard enough just to find the time to cook dinner. We've eaten so much mac & cheese and baked potatoes that it's all we know that and lots and lots of eggs. Cheap staples are what we lived on. Shaving every 3 days was a way to save money on razor blades and shave gel. We did what we could and we did what we had time for.
I just don't know what else to say to answer that. It's been really hard just to manage life.
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Matthew I just reread your whole post again now that I'm not working on a PC and all my kids are asleep. What a great suggestion and what a firm piece of encouragement. That's like total "coach talk" and that really is cool. You are right. Katie is bouyant. She has a laugh that spreads like a virus. If you hear it you'll crack up just because there's so much belly in it (which is odd really). Katie is fiercely defiant and if it hurts she won't say a word. She wants more than anything to be treated like a "normal" kid and she doesn't for a second want to be coddled. She will lead the charge into the fray for that very reason.
So you are right. Changing domain names or moving things over to pediatricparents.com (which I've had registered since 2003) is the right thing to do. As a father you make a good point. What values do I want to instill in my kids? "GivingUp" or "FightingHard"? That's a no-brainer and you make such a good point. I feel like a total "Duh!" for not seeing that sooner...
Thank you for the comments. The constructive help is totally
so thanks!Well erm... I owe, I owe so back to work I go...
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I hope you ask for help in all domains of your life. I also hope you slow down, consider full time work, and evaluate other lifestyle changes.
Most bankruptcies in this country are due to medical conditions. That won't go away with socialised care, because some care is done out of love and not out of cost efficiency.
Don't change your domain, just mirror the content/pointers.
Best wishes to you.
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Rex,
You have my prayers and best wishes. I bought a ticket and wish I could do more. I'll try to remember and get another one next month. Try not to be to hard on the folks that got down on you thinking you were a scammer. I'm an ex-cop and my first thoughts (even when seeing your post here at sqlservercentral.com) was "Is this a scam?". Unfortunately there are a lot of people out there that will take advantage of others generosity by concocting such a story. The really terrible thing about those type of people is not how despicable they are, but that they take money that might otherwise go to someone who truly needs it.
There are a lot of folks in similar situations and it is unfortunate we can't help them all. However we tend to notice the ones that make the most noise, so as a father your doing exactly the right thing by making as much noise as you can. Keep shouting, there is nothing wrong with asking for help.
Just two days ago I was complaining about the cost of sending my daughter to college (she starts this fall, Computer Engineering). After reading your story I was reminded that there are a lot worse things to have to worry about. While my contribution is small, I hope there will be many such small contributions and that they can help make a difference for you and your family.
I also wanted to add my thanks to Steve Jones and Red-Gate for taking the time and this forum to allow us an opportunity to help a colleague. I know you can't do it very often but it is nice to be able to every now an then. When I was in the Military and as Police Officer we always had "Funds" that we contributed to, to help our own when in need. I'm glad to see a little of that here among Technology Professionals. We can't help everyone but we can make a difference for some and that's a start.
Best wishes to all,
James.
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I actually cannot make enough money with full time work. We'd be devastated if I tried that. As far as bankruptcy goes (and I cannot tell if you are suggesting that or not) my kids have been through so much stress already my wife and I both agree they need stability and we are going to do the best we can to guarantee that. My son (interestingly enough) seems to have been the one most severely impacted by this. He was first born and has an unbelievable memory. He got to watch us rushing around trying to save Katie's life a lot. He's seen paramedics at our home frequently. He's lost his room which is his domain so many times. We've had to move about 9 separate times since he was born and he's 6 now. My daughter Paige is also showing some signs of stress too. Katie is the sleeper in all of this and I know she's the worst affected one there is but she hides it.
No matter how much work I have I always stop from 5:30-6:00ish till 9:00ish and then work 9:00 to 11:30 so that I have time with family. I try to only work 6:30 to 10:00AM then 2:00 to 5:00PM then 9:00 to 11:00PM on the weekends so my kids get the most of my time. And if I do take full days off and I do I try to do it during a work week and they love that.
My only hobby is exercise and my kids. I'm fine with that because before Katie was born I had an unhealthy amount of hobbies that took me away from home for too long. I used to race mountain bikes and that's just a huge time suck. I'm actually really enjoying working at home where I can always see my kids. My office door is always open and they come in at their own will and I always stop to talk or help them on something.
Yes, I would just roll across domains with pointers or redirects.
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