I will start from the Marfan Conference.  It was very nice, informative and good for us to go. I got to meet so many families that are in the same boat as we are. It’s a comfort to have people who truly understand.   Kierra participated in the free clinic, where several marfan specialists in different […]

Dear Kierra 

You’re finally asleep now, you’ve had a rough day. You have a fever and just don’t feel like yourself. So we sang to you and rocked you and finally when I said “How about we lay you down, you dream about Beauty and the Beast?” You agreed and fell right asleep. You loved that movie […]

Mommy Sad

Kierra is incredible.  I say it all the time but she really is. She sat completely still during the entire echocardiogram  (20 minutes +) she didn’t complain or try to get up. She happily watched her favorite movie, Trolls, and allowed a stranger to probe her chest, andomen and neck. Keep in mind Kierra has […]

Brace life

Mostly I wanted to update everyone on how K is doing with her brace. I think, in a word, amazing. There have been and continue to be obstacles but she is AMAZING.  I would estimate that she wears the brace anywhere from 16-20 hours per day. She has been sleeping all night in it (12 […]

Pour It Out

When you casually ask someone how they are doing, do you really want to know? I find myself wondering how someone would respond to me if I answered that question truthfully. I wonder how I would respond to someone else who answered me that questions truthfully. There are not many people in the world who […]

Decisions, Decisions

Being a parent means making many decisions based on what you decide is the best for your child. The amount of decisions to make increases and becomes more difficult when your child has special medical needs. I haven’t talked much about it but we are facing a few things with Kierra and it’s tough on […]