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Katie Expand / Collapse
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Posted Sunday, July 8, 2007 11:56 AM
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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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Post #379808
Posted Wednesday, July 11, 2007 11:25 PM
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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

Post #380972
Posted Thursday, July 12, 2007 4:25 AM


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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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Post #381030
Posted Thursday, July 12, 2007 8:31 AM


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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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Post #381126
Posted Thursday, July 12, 2007 8:36 AM
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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.
Post #381127
Posted Thursday, July 12, 2007 9:08 AM
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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
Post #381149
Posted Thursday, July 12, 2007 10:41 AM


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Rex thanks and if anyone has questions, feel free to post them here.






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Post #381186
Posted Thursday, July 12, 2007 1:14 PM
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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.
Post #381236
Posted Thursday, July 12, 2007 3:00 PM
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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

Post #381271
Posted Thursday, July 12, 2007 8:53 PM


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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.

 



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