Hello everyone,
This is a personal note for you today.
Many of you know I have a special little daughter (http://www.starshia.com/) who has Down Syndrome. This is not a big deal becuase really she is like any other child with her 5 year old attidude and all. :)
What is a BIG deal is the fact she has a heart condition called Tetralogy of Fallot with pulmonary atresia.
Tetralogy Of Fallot is a complicated heart condition HOWEVER she has the added Pulmonary Atresia, this makes her cases all more difficult.
When she was born she was flown to Children's Hospital to have emergency surgery on her little heart, she was born very blue and quite ill. 2 Months later she got to come home with a patch.
Again at 1 year old she went back for open heart surgery to have a valve repair. (you can read more about her on her web site link I provided at the top of the post) We had always known that because of her situation she would indeed have to go back in for another operation and now that time has come.
She has calcium on her arteries and so they can not put a stint to open her valve, they MUST replace it.
As a parent I don't have to tell you how scary this is for us, I am reaching out to all of my dear friends from all over world to request prayers for our little one as takes her journey into the O.R.
She will be going in for open heart surgery on May 17th and I will keep you all posted. In the mean time I will be here creating for you.
Happy Easter to you all and be sure you give your little ones a special squeeze everyday.
Kit
Friday, April 22, 2011
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8 comments:
I just wanted to let you know my thoughts are with your special little girl. I myself am a congential heart patient, born with tricuspid atresia, basically I am missing the tricuspid valve. I was diagnoised at 3 days old, and sent home at 6 months, and the dr's didn't believe I would survive. I had my first open heart at a year, my 2nd at 3 years, and my 3rd at 5 years old. I am now 32 years old and as healthy as anyone else.
I know your daughter is going to be just fine, and stronger and more heathly after her procedure. Best of luck to you all and please keep us informed of her progress. I looked at her website and she is too sweet!
I'll keep you both in my prayers! It's hard on us when our little ones are just sick - never mind with such major problems, so I know this must be worrisome. ((Hugs))
I do know what you are going through. My son has transposition of the great arteries. He had his first surgery at 3 weeks. It's nerve wracking. He's now a robust, husky 18 yo. Everything will be fine! I'm sure she had great doctors.
I am a Mom of a very precocious 4 year old, and as a parent, I know how scared you are - we are all behind you and thinking good thoughts for a safe and successful surgery for your little one!
I lost my only little angel to a heart disorder so I feel for you. I will send prayers for her and your family. Thanks so much for sharing.
My little one is healthy and I thank god for that. My husband has heart problems so I do have an understanding. This operation will have a wonderful impact on her. Only good thoughts here. The angels will watch over her during surgery.
All your cyber friends and followers will be sending prayers and best wishes your way for the best possible outcome for your precious angel. Remember that you do not walk alone, the Lord is with you; and with HIS help modern medical science can perform beautiful miracles for us! Much love!
Thank you all so very much for all the warm wishes and prayers.
You all touched me deeply, it truly means the world to us to know our little one has so much support.
I can't thank you enough for sharing your personal stories and helping to ease the anxiety in our home.
She will be in the best care possible and with all of you saying a prayer and sending warm wishes it will be even better.
She is a little warrior.
I thank you from the bottom of my heart.
Kit
AKA Scrappin Wright
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