Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Friday, August 15, 2008


Okay everyone... I am just reminding you that if you haven't pre-registered for the Walk/Run the deadline for preregistering is The 20TH that is NEXT WEDNESDAY..... I also wanted to get a count of who will be in GATOR"S GANG..... So that I can get you a special thing in behalf of him.... We want everyone to know that you are with US......... I am so excited to also tell you that our group just got the letter telling us that we are officially a non-profit 501c3 status org...... YEAH... that means that if you donate to our group you can receive a tax write off.... YOU GO!!!!

So if you want to bring me you registration (printed from here- I will turn them in for you and save you a stamp..... Or you can call me and just send me the $ and I will do a registration form for you....

One last thing.... I just wanted to tell Uncle Mike and Aunt Karen that WE ARE THINKING ABOUT YOU!!!!. They were the first to help us out with the fun run... Uncle Mike Get Better Soon... WE LOVE YOU!!!!!

1 comment:

Anonymous said...

Hey Brynne- I just got to your blog through my sister Nicki Crockett's blog (funny how that works) and you used to do my hair in your pre-kid life (remember that?)

So glad to see your beautiful kids doing so well. It's been a long hard road and it's great to see you all thriving!

Good luck with your event. I'll see about making a donation, when our twins were born Logan had SVT and Bethany had a PDA- they were 11 weeks premature. Fortunately, they've grown out of the problems and both are perfectly fine now but I'll never forget the scare we had. And I know we were so fortunate to get the miracle that saved Bethany's life.

It's great to see you making in difference in the lives of families who are in that hard place. There's nothing like taking a trial and making it a blessing to others to heal the soul.

Cindy Bee
(hey- let me know if you still do hair at home- mine is a wreck!)