May 20, 2010
CHD Again
I had gotten to the point of enjoying entire days without thinking of CHD until a few days ago. It reared it's UGLY head back in my life. My heart breaks for these families that have recently lost their children. Please keep them in your prayers.
One is Allie, we met her parents in the hospital when we were there with Alexa back in Februray. Yes, in February! They have been there all this time. Allie fighiting one thing after another ~ such a brave and strong baby girl! Last week she was sitting on her mommy's lap smiling, looking like she might finally get to go home. She then turned very septic and today I read she passed away.
My heart also aches for Bryce and his family. A 13 year old boy waiting for his 2nd heart transplant. All he wanted to do was be in school and hang out with his friends. Instead he enured many long hospital days, strokes and organ failure and has now sadly passed away.
I has also recently began to follow Chrissie's journey. A precious little girl that has endured way too much for her short age. As I read her mother's blog I was brought to tears by her relating the story of her needing to get off ECMO and telling her daughter to fight while Chrissie although suppose to be sedated from drugs had tears rolling down her face. She has also sadly just passed away.
Please pray for these families as they must endure this unimaginable pain and loss.
I HATE that CHD can do this to children and families! I HATE that it cannot be cured now! I HATE that you never know what complication can arise!
It is just a reminder to enjoy each day to the fullest and love and enjoy your family today like it were your last.
April 28, 2010
Weekend in Pictures
This past weekend we were able to meet with other parents of children with mended hearts at a local park throught the Mended Little Hearts Organization. It was great meeting other heart moms and watching our kids who have beat the odds just run and play. I look forward to working with Mended Little Hearts on future projects and helping and meeting other parents along the way.
Perfect game weather!
Elisa, Me and Daniele
A partial group picture
On the hill.
After the picnic we went to enjoy a the Diamond Backs play a game. My son got to go out to walk the field with the little league baseball team my husband had him join. They are the Angels! Go Angels and D-Backs!
The Boyz!
Say cheese!
Perfect game weather!
The fabulous five!
Alexa was surprisingly good through out the whole game which was pretty long. It's nice to be able to go out and just take her places now. She is discovering a whole new world she never new existed. Everywhere new we go she says "Wow!"
Life, for now, has resumed to normal. After finding out about Alexa's CHD I always wondered if I would ever feel this way again. If you are knew to the CHD journey please know it is possible. Not only to survive this journey but to be happy again.
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