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t h e . d r e a m e r
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 Posted: Thu Feb 23, 2006 11:25 pm Post subject: PROJECT EMMA GRACE |
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This is a message I copied from a Mother's blog about her little girl called Emma Grace:
| Quote: | Today has been a pretty good day for Emma Grace. She was granted “leave” from the ICU for a wagon ride this afternoon and her face lit up! She amazes us daily with her spunk and smiles
I wanted to give everyone a detailed update, I know they have been pretty short.
Emma was diagnosed with “Transplant Associated Coronary Artery Disease” :
The definitive diagnosis of chronic rejection is again generally made by biopsy of the organ in question. The heart is an exception to this generalization: chronic rejection in heart grafts is felt to be manifest by accelerated graft atherosclerosis. In other words, the transplanted heart rapidly develops “hardening of the arteries. In many situations, the current standard treatment for chronic rejection is retransplantation.
We spent the last month and a half in Shands ICU, attempting to put together a plan of action that is best for Emma Grace. Our choices were “palative care” (taking her home, letting her live out the rest of her life there), Treating her aggressively with immunosuppresion medication and heart function medications and trying to get as much out of this heart as possible while preparing her to be relisted for another transplant. We chose the second option. Retransplantation is not an easy choice, it is much more difficult on her body and she has a very high chance of not surviving the surgery when that time comes. The doctors want to try to get another year out of this heart and try, in the mean time to get her as strong as possible. Those of you who have met Emma know that she is a very frail skinny child, which doesnt fair well for her health during such an intense operation. There is also the problems with scar tissue from the previous transplant, and it is increasing harder from the second transplant to come off life support/heart lung bypass. To say this was an easy decision would be a lie, but in the end, we felt we owed it to her to give her the opportunity to live. She has come so very far, four years is just too little.
So, at this point we are in a waiting game. Life for us has changed tremendously. We are prepared for all scenerio’s - well as prepared as we can be right now. This came out of no where, there were no signs of illness, no red flags- Which we have been told is common with this type of situation. Emma’s heart has no nerves (they were cut during transplant) so she cant tell when her heart hurts… The biggest concerns the doctors have with this type of situation is that she will have a heart attack or stroke and not know it until it is too late..
My Mother-in-law has moved into our home for the time being and is taking care of our other two children. Mark and I are taking Emma back and forth between Jax and Gainesville regularly. Like I said, life has changed.
This last episode scared us to death. Emma Grace turned blue and we called 911. Once she was life flighted to Shands, it was determined that due to her blood infection (from her pic line - an IV that goes directly to her heart) her heart could not keep up. She als had developed pneumonia from the blood infection. This all happend within 1 week of being home. She is on IV medications and the PIC line has been removed, her pneumonia is getting better and she is spunky again.
So there is the story, begining to end. Emma needs prayer, as do we. I dont know what the future holds for my daughter, or for our family, but I do know that her father and I will do everything in our power to make sure that she gets every opportunity to live a wonderful life… however long that may be.
Make a wish has planned a trip to disney for Emma Grace in the near future - Please pray that her health lends her the opportunity to go. Her doctors have approved it, pending certain pre requisites healthwise. She is so very excited about it and would be so disappointed if she couldnt go.
Im going back to the room now. I dont know when/if I will update again… I appreciate all of your thoughts and prayers, she needs all she can get right now.
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I am not telling anyone where the blog is so we can give her some privacy but I want to do something for Emma. I think she is only 4 years old. She wish to go to DisneyLand and I ask that we all pray for her that her wish will come true, that she will recover to visit that place.
Meanwhile, those of you who works on graphics, lets post greetings with Disney Character here in this thread. For those who doesn't know how to make graphics, just send a post here with your message and we can help design it. Post it here okay so I can copy the graphics and make a special page for Emma in the club website. I want to have a few graphics here first before I surprise the mother.
Help me make PROJECT EMMA GRACE possible and make this girl happy with our graphics!
Hui Xian |
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t h e . d r e a m e r
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| Posted: Thu Feb 23, 2006 11:42 pm Post subject: |
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t h e . d r e a m e r
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| Posted: Fri Feb 24, 2006 12:03 am Post subject: |
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Karen
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| Posted: Fri Feb 24, 2006 10:03 am Post subject: |
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Hi, it is really sad to hear about the poor girl and it was really nice of you hx...
I pm you some graphixs for her, hx..
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jijilin
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| Posted: Fri Feb 24, 2006 11:33 am Post subject: |
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can we do it in paint
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Karen
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| Posted: Fri Feb 24, 2006 12:03 pm Post subject: |
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I guess you could, after all its the thought that counts... I guess 
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SmileyC
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| Posted: Fri Feb 24, 2006 4:16 pm Post subject: |
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do you know her address ?
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t h e . d r e a m e r
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| Posted: Fri Feb 24, 2006 4:37 pm Post subject: |
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No, I don't have her address but I wrote to her mom's blog and if she gives me permission, then I will link the blog here. There are many messages from her relatives writing and sending her support.
It must be so terrible for the mom to see her baby like this. She has no choice but to accept that her daughter may die at any time. :::bummer::: I think she mentioned the Hospital Right- if I don't hear from her, maybe I will try to get the hospital to show her our gifts for her.
If you like, paste this in your blog and send a friend one too. Below is the code:
kimi25, my mom has added your graphics in her page. It's not so neat right now because we hope to get more graphics soon and so can arrange it better. Thank you. |
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SmileyC
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| Posted: Fri Feb 24, 2006 4:40 pm Post subject: |
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well iwas gonna draw her something to cheer her up. Since that's the only skill i have....
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mystical_xmex
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| Posted: Fri Feb 24, 2006 8:02 pm Post subject: |
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HX its really nice for u to do this.....
its soo disturbing such a small girl &all this happening to her.how sad itll for her mum...
just hope she is fine...
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jijilin
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| Posted: Sat Feb 25, 2006 5:05 am Post subject: |
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| kimi25 wrote: | | I guess you could, after all its the thought that counts... I guess |
ok cause i made her this with my two hands
  
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NiCA-ChAN
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| Posted: Sat Feb 25, 2006 7:59 am Post subject: |
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awww , that's vewy sad!! sobb , I will give her graphx when Carmela my friend @ school borrows me her Adobe CD (if her cuzzin allows her to borrow)
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Love is a mysterious thing like inside a box...
Love is where we express our feelings for somebody...
Love is where we send gifts like flowers, chocolates for them to feel our feelings for them...
Love is when a relationship build and build until it became pure...
That's my meaning of love. What's yours and who's your valentines?
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NiCA-ChAN
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| Posted: Sat Feb 25, 2006 8:01 am Post subject: |
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| The ALLSTARSCLUB wrote: | |
awww , the giraffe is soo cute!!
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Love is a mysterious thing like inside a box...
Love is where we express our feelings for somebody...
Love is where we send gifts like flowers, chocolates for them to feel our feelings for them...
Love is when a relationship build and build until it became pure...
That's my meaning of love. What's yours and who's your valentines?
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SmileyC
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| Posted: Sat Feb 25, 2006 9:14 am Post subject: |
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yeah it is !
i'm sure she'll love it
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xpherical
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| Posted: Sat Feb 25, 2006 9:54 am Post subject: for emma grace |
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for emma grace
<img src="http://i44.photobucket.com/albums/f26/xphec/haha.png" border="0">
<img src="http://i44.photobucket.com/albums/f26/xphec/hehe2.png" border="0"> |
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