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Tuesday, October 30, 2007

Ok, here it is

The long-ass post that was promised last week. I even have a LIST of what to write about. How sad is that? It's the only way I will remember. My brain is shot--I think that I've been out of the workforce and around kids for way too long. (No, that's not going to change anytime soon. Today was a very, um, "trying" day with Elizabeth.)

So I hope you read the news about Emel and Aytekin. If not, read the post before this one.

You might notice that the look of Drew's slide show has changed. If not, you're not very observant. :P I have updated the music and added some pictures. Some pictures of Drew's last day. I finally feel fairly comfortable sharing more. He did not look like himself when he died. He was carrying a ton of extra fluid. But the people who read this blog care about Drew and will not remember him the way he looked at death. That is my hope because that's not the way I remember him in my mind. I was looking at the pictures of him after he died just the other day and crying because his poor little body was just so abused (for lack of a better word). I don't want to get into all of my swirling emotion over that kind of stuff, but check out the updated slide show if you get a chance.

Here are one set of Carson's 6-month pics. I was not pleased with the photographer (things off-center, cutting off Carson's feet, etc.) so I had them redone a few days later at another place. I don't have those yet but they're much better. Anyway, here are the ones that I have for now:









And look at this one of Elizabeth at 5-months old. I'm having this one of her and this one of Carson framed side-by-side. :)





When we were driving to Texas a couple of weeks ago, we saw something cool on I-40. We always see something--sometimes very strange (drug busts) and sometimes pretty cool (NASCAR caravans) but this was the best one yet!

We came up on about 10 Harley Davidson riders following an 18 wheeler. Strange because the motorcycles generally just zip right around the trucks. Then I noticed that the truck had 2 flags on the top of it's trailer thing (whatever it's called). An American flag on one side and an Oklahoma flag on the other. So I'm wondering what's going on.

As I'm passing the Harley riders and truck, I see 11 motorcycle state troopers in front of the truck and 2 trooper cars, all with lights flashing. Then I notice that at every on ramp, one of the motorcycle troopers blocks it and has any cars attempting to merge onto I-40 wait until the caravan has gone by. Now I'm REALLY wondering what's going on.

As I pull up beside the truck, there's a sign that reads, "Oklahoma Memorial - Destination Pearl Harbor." Oh COOL! For those who are a bit rusty on history, the Oklahoma was a ship that was destroyed at Pearl Harbor--the event that prompted the United States entry into WWII. There has never been a memorial erected for the U.S.S. Oklahoma. That is, until this year, Oklahoma's Centennial Year.

That truck carried the first shipment of the memorial to honor those who died on the U.S.S. Oklahoma. I can't explain the emotions that I felt when passing the truck. And I was so proud of our state to see the escort that it had. I have a feeling that the Harley riders just fell in after the truck as a sign of respect. Here's
a small article about it from Gov. Brad Henry's website. I'm probably the only one that gets a thrill out of this but oh well. I also get a thrill out of the fact that Carson is a Centennial baby. Yes, I know...I'm a dork.

Denise, a woman that I know via Breath of Hope, is great at creating computer graphics. Look at what she has done for our CDH kids, angels and survivors alike. Thank you Denise, this is an amazing tribute to all affected by CDH.

Speaking of Breath of Hope, the leaders are working on some pretty neat things for CDH. The one that has captured me is the effort to have a CDH Recognition Day (March 31 annually) by each of the 50 states. So here comes the part where I ask you all to do something for anyone touched by CDH; get the sample proclamation and letter and send it to your state's governor. This will help increase awareness of this condition immensely. You can e-mail me (janalyn at sbcglobal dot net) to get a copy or request one directly from the BOH link above.

The most current information that I have is that these states have made the proclamation:

Virginia
Pennsylvania
Iowa
Nebraska
New Hampshire
Wisconsin
Mississippi

City: Charlotte, NC

Please let me know if/when you do this and mail it to your state/city government. Someone is keeping track of this information so I need to pass it on. Let's get this going on the state level and then maybe, hopefully, in the future, onto the federal level!

Also, CHERUBS new website is up and running. Dawn has made a great organization with a ton of information and I urge you all to visit if you would like to learn more about CDH. CHERUBS was *the* original resource for CDH information and looks great with it's new look!

And finally, I saw a "Mystery Diagnosis" program on Discovery Health the other night that brought CDH to the front of my mind again. A little 3-year old boy named Christian was having problems with vomiting and constipation. The mother KNEW that something was up but kept getting the brush-off from multiple doctors. One finally thought to take a freaking x-ray and guess what? The child had CDH. His stomach and intestines were in his chest. The hole was approximately the size of an adult fist.

Can you imagine that this was not found for 3 years? They did not say anything about lung tissue but he had to have had almost completely developed lungs for no one to have noticed any issues prior to this. Christian got his repair and his mother reported that he no longer had problems. Which is so great for them.

However, it kind of pissed me off that this is being shown as the normal course of CDH. There was no mention about the number of kids who die because of this or those that have lifelong issues (a good majority from what I've learned). The entire issue of CDH just seemed to be downplayed and I was yelling at the television. Even woke Carson up. I'm getting upset again just thinking about it. I would expect more from a program on Discovery Health than say, Grey's Anatomy (love that show but still majorly upset about their CDH storyline), but I should know better by now. The media has limited time and their own biases that comes across just about any program/article/etc. Ok, I won't go off on THAT rant today (you should be happy because I have plenty to say about that one!).

Hope that everyone has a fun, safe Halloween tomorrow. If you don't celebrate it, have a great day and don't let freaks like me, who love Halloween, annoy you too much!

2 comments:

Kathy McC said...

Beautiful photos!

I will be sending a letter to our Maryland governor for the CDH awareness day proclamation. Hope this helps!

Carole said...

Jana,
The video is awesome...thank you so much for sharing Drew with us.
~Carole