Please join me..........

[gijanet]

in honoring Congenital Heart Defects Awareness Day tomorrow, Feb. 14th. Many states and cities across the US have proclaimed February 14th as Congenital Heart Defects Awareness Day. There is actually a bill in the Senate to make this official. There is a similar bill in the house (HR 305) to declare the entire third week of February Congenital Heart Defects Awareness Week. While we would love to see the House bill pass, we will settle for the Senate bill for now. Katie actually has a genuine proclamation from Governor Rick Perry for 2004 for the state of Texas. Will have to request another one for this year (last year we were in the heat of the battle, sweating her impending surgery and I forgot to request one............oh well............). I regret that this year's date snuck up on me, too. Next year I will send out tchin phamplets and stickers to anyone who wants them to distribute. But, for now, please join us and spread the word.

Sorry for being so scarce the last couple of weeks, but between Katie's dental ordeal (which, btw, I just got a bill from Cook Children's for $3800 and the facilities and anesthesiologist were supposed to be covered..............sigh! Guess I get to have another head banging conversation with my insurance company......WHAM! WHAM!) and the flu and our impending TAKS ELA test on the 21st, roadkilll could whoop my as* right now. Will answer PMs etc, soon.

P.S. Katie's fine. Decided she wants to be a cosmetoligist. Will have to post a pic soon, so y'all can all sign up for an appointment before she is all booked up............ She has an African American doll head that she's been practicing on............why? I dunno. That's just the one she picked.

Much love. J.

 

[gijanet]

Ross..........

Ross..........

Why is my message so wide, or is it just my screen? If it's everybody's, can you fix it? Much love. J.

 

[aussigal]

Janet...I have been wondering how you and Katie and her teeth have been...

what a doll she is...a true gift from God is Katie

hugz to you both

ton

(Mtnbiker. thanks for setting me straight ...)

I wasnt here then... ...

I have a mental picture of Katie standing cheekily on her pink-barbie-doll jeep... and I had never caught up on the whole Katie-story...All I know is she is the most precious lil girl we have here on VR...

May God continue to bless her and keep her well...

Valentines-day is the best day ever to be wearing our hearts on our sleeves for these precious kids...little did I know there were 4 of us in my very own family...

 

[mntbiker]

Tonya,
Here is the story to go with the picture:
http://www.valvereplacement.com/forums/showthread.php?t=11945&highlight=katie

 

[Emma]

Its CHD awareness day/week over here too Janet - very fitting as its Valentines day as well today. Lots of events going on to promote awareness.

As a side note too, did you know Bev's Lucy is on the transplant list now???

Hope Katies doing well!!
Love Emma
xxx

 

[Mary]

Janet,
I'm getting to be a big girl. I can look at this picture of Katie and not tear up!
I don't know how you, and the other moms on the site, do it!
My hat's off to you all!

Give Katie a kiss, if you can catch her, and tell her I need an appointment for a pedicure and manicure.
I assume she's practicing with nail polish???

 

[Lynlw]

Actually IF everyone would write to their congressmen and ask them to support HR 305 it would be a huge help, I posted about it before but incase you didn't see it here is the info http://tchin.org/aware/index.htm#CHD
there is alot of difference between the one that got passed (congress69 and house 629)and 305, mainly the one that was passed by the house and senate (or will be today) is only for today, this year where "our" bill would be forever.it also has some things in it that are wrong (
also 305 talks about trying to get newborn screening and making parents and doctors more aware of CHD and it's symptons, which would save lives.
So since today is CHD Day, I think it would be great if everyone wrote to their congress man Thanks you Lyn

 

[tantekay]

CHD Awareness

CHD Awareness

I don't know if anyone is Virginia is working on an official CHD awareness day or week, but I would like to love to have something around here as well. If there is any adivse or info you can pass along, please let me know. I do watch for info on Katie and I hope things are going well after the dental ordeal.

 

[Lynlw]

I don't know if anyone is Virginia is working on an official CHD awareness day or week, but I would like to love to have something around here as well. If there is any adivse or info you can pass along, please let me know. I do watch for info on Katie and I hope things are going well after the dental ordeal.

Here is a link http://tchin.org/aware/index.htm it has all kinds of info on CHD Day /week how to help get proclemations and participants and events so far there are 9 countires besides the US but the list will probably grow, Lyn

 

[gijanet]

So, Ross...........

So, Ross...........

Why is my message so wide, or is it just my screen? If it's everybody's, can you fix it? Much love. J.

I see you have given up on trying to "fix" me..................that's okay. Many others before you have tried and failed............ Hugs. J.

 

[gijanet]

Thanks, guys..........

Thanks, guys..........

as always for your support. Seriously, if you get a chance to zap an e-mail off to your congressional reps, that would be greatly appreciated. Far too many kids go home, only to be rushed back in CHF because their heart defects were not "caught" at the hospital, so CHD awareness is a must.

Despite my having numerous sonograms and an amnio, Katie was not diagnosed in utero...............still can't figure out how they missed the heart being located on the right side . Looks to me like it would have been obvious, but what do I know.............. I mean, I had a sonogram three days before Katie was born due to my advanced maternal age (which was 29, btw.........heehee! worth a shot!) Fortunately, despite initial Apgar scores of 8 & 9, Katie's defects were caught shortly after birth because a very perceptive NP (not doctor, mind you) discovered that Katie's heart beat was more pronounced on the right than the left..............then we were shipped over to Cook's (Teddy Bear Transport took her and Don followed her over; the hospital wouldn't release me yet, so I sat there for hours wondering what the hell was going on with my child at a different hospital in a different city, but that is a whole 'nuther story. I did sign myself out against MA first thing the next morning and beat it over to Cook's) and thus we began our CHD roller coaster ride. So, here we are, five years later, five surgeries later, still kicking and screaming.............Katie kicking, me screaming.

If you open the link that Lyn sent (by the way, Lyn, did you really have gall bladder surgery yesterday...........you go, girl. I can't believe you are online already and functioning.), you will see a group shot of the Dallas Heart-to-Heart Christmas gathering. Katie and Don are smack dab in the middle of the back row. I'm right in front of Don. Notice also that our own VR JeanneImp was the one who started this whole CHD awareness ball rolling. And a little bird told me that Lyn had a lot to do with getting this House Resolution started.

Ton, I have to confess that this picture is really from Katie's third surgery (the valve repair that sadly didn't hold up). Don has reorganized my desktop, so only God and Don know where the pics are from Katie's fourth and fifth (2 for 1 sale) surgeries. And thanks for asking about the dental aftermath. All is well. Just Katie was wondering why she got carrot sticks for Valentine's Day instead of candy............heehee!

Oh, Mary, God bless you child. You know not what you speak. (Just wait until I find time to take a pic of that "model" and download it. Frankenstein's bride comes to mind.) Besides that, you are only volunteering because you are some five hundred or so miles away.

MB: Thanks a lot for listing the link for that old thread. I spent two hours rereading the whole thing..................sigh! Talk about surrealistic. Geez! Highs and lows..............you guys were the highs (your posts of support still bring tears).................and oh, reliving those lows............I can't believe you even dug that up. You warmed my cockles............uhhhh, do females have cockles???

TK: Thank you and I hope that tchin link answers your Virginia questions. I checked and, yes, Virginia, there is a proclamation............for your state. Go get it, girlfriend. Just follow the instructions on how to request one. I was pretty impressed when I got Katie's two years ago, but it took awhile. In fact, I had even forgotten all about it when, lo and behold, it arrived in the mail............original Gov. signature and all.

Much love to you all, and thanks as always. Hugs. J.

 

[terryj]

My husbands works for Owens Corning Fiberglas and they gave out bags yesterday with heart healthy snacks and information on Heart Awareness. They also put all the women who work there and wives of the employees names in a bag and drew for prizes. He brought me home a black t-shirt with a red heart on it that I had won. I will wear it proudly on casual Friday this week.

 

[Lynlw]

Thanks Janet, and yep I had gallbladder surgery on monday and a liver biopsy since they were already in there . it was laproscopic so only 4 small holes, but I think perhaps I overdid it alittle because I'm sore today, actually just one of he holes is sore and bruised so it could be worse
I did have enough sense at the last min not to go to Justin's appt yesterday, he ended up doing great. for the first time since he was 9 he is ok for a YEAR!!!. He also dropped off some hug pillows he made to st Chris. which worked out well since it was CHD Day.He started making them when he was 13 for his Eagle scout project, but they helped so much, he still makes them every so often to take. yesterday was the firsttime he took any to St Chris and they were so excited since they know it will really help the kids w/ their pain. we keep hoping when families get them they will see what a good idea it is and donate some themselves, but so far noone has.
THANK YOU to anyone who has contacted their congressman for HR305, if you hear back could you please let us know? thanks Lyn

 

[tantekay]

Thanks

Thanks

Thanks for the site on CHD awareness -- Although my son is now 2 1/2 I'm still learning so much about everything out there on CHD. My only problem is that I stopped teaching to stay home with him and now I keep children in my home and work a nights and weekends at another job to make ends meet so given all this I dont' have that much time to find all the info out there. When I do have any downtime, I'm usually trying to catch my breath and learning all I can about my son's conditiion. I do want to become more involved -- I think there are a lot of people in my area that think they are alone in their jouney in dealing with CHD. I know that when we go our son's diagnosis at 1 week old -- I was in shock. I'm just very thankful that the pediatrician at the hospital where he was born said he heard a definate murmur and was concerned that his heart rate was up and wanted us to follow up with a Pediatric Cardiologist -- we ended up at the office 2 days before our scheduled visit - thanks to our regular pediatrician. And now we are preparing for our Fontan and our cardiologist is wanting to see if the surgeon wants to do anything with the leaky aortic valve -- the funny thing is that she says that with his defects - the aortic valve is now like a spare part and he doesn't really even need it - I guess I'll find out by the time we go to surgery. Anyway -- now that I've rambled on for way to long -- I still wanted to say thanks to you guys for your help and I will be working on CHD awareness for Feb. of 2007 here in VA. Thanks again!!! Also, Lynlw -- I hope you are feeling better -- take care.

 

[aussigal]

I continue to be amazed and proud to know you Janet...

You are one amazing and courageous woman with a courageous and most gorgeous gorgeous lil girl who has been through the wringer and is still kicking to tell the story!


God Bless you all

love and hugz
Ton

 

[Yaps]

That poor baby, add me to the list...

 

[Karlynn]

Janet,
I'm getting to be a big girl. I can look at this picture of Katie and not tear up!
I don't know how you, and the other moms on the site, do it!
My hat's off to you all!

It took me 2 days to work up the courage to scroll down to the picture that I knew (from what I saw by the top 1/2 inch) must be a picture of our precious KatieLion all hooked and tubed up.

I'm so very proud of all our Heart Mom's here. I would go through the surgeries myself a million times before wanting to see my children go through it. You all have courage and strength that is unrivaled. God bless you all, and may He guide and protect your precious children.

 

[tantekay]

Question for Janet

Question for Janet

Hi! I may have missed something along the way - so I apologize if this is a silly question, but the pic you posted of Katie -- after what surgery or procedure was that taken -- we took pics of Eric right out of his first surgery - modified norwood, modified bt shunt, and sk damus procedure, and then again after his glenn -- major differences in how he looked and how much he was hooked up to. (here's a recent pic of Eric if I correctly added it.) Thanks Karen

 

[Guest]

Janet,

Thoughts/prayers coming your way for sure.... If you didn't get a chance to see my "planning vacations" thread, I _plan_ to be in Texas in October .


As for that pic of Katie ... oh my goodness. I sure hope my parents/sister didn't get any pics of me while I was in the hospital ... hmmm....maybe I better ask ... heh.



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"I know I told you that I could survive" ... Deborah Allen ... 'Baby I Lied'

 

[gijanet]

Awww.....shucks!

Awww.....shucks!

I continue to be amazed and proud to know you Janet...

God Bless you all
love and hugz
Ton

Dunno what I did to deserve that, but thank you. Hugs. J.