Skip to main content

Rare Disease Day - February 28th, 2010

Today is Rare Disease Day. Ivey falls into this catergory. With her known diagnosis as a deletion to her 21st chromosome, she is a rare little bird. There is no assigned name to her genetic abnormality, no small group of children to connect with, no parents to get advice from, no associations what-so-ever, none of her doctors have seen this before. So please take some time to think about how this rare genetic abnormality affects Ivey, her family and all of us who know her.

Comments

KrisKay said…
Thinking of you guys a bit extra today!
March 1, 2010 at 11:23 AM
Post a Comment

Popular posts from this blog

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU.  My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself.  That decision did not come lightly.  Another hole in her.  Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival.  Literally to give her a chance to live.  A permanent decision.  A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...
Post a Comment
Read more

BEAUTIFUL GREEN EYES........

56 comments
Read more

Sibling Secret Sauce

Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...
Post a Comment
Read more