I have written and erased and rewritten this so many times. Who knows what number draft you are now reading. Kierra’s open heart surgery was and is, hands down, an event that impacted our lives, the most significantly of any experience we’ve encountered thus far. I don’t think anything can top it. I don’t think […]
My mind is a bit jumbled so forgive me as this post may jump around a bit. Most of you are aware that we came to Johns Hopkins for Kierra to have a spinal surgery. Well, thank God that we saw cardiology first and they repeated an echocardiogram of her heart. The entire cardiology team, […]
I have been wanting and not wanting to blog about this for quite some time. I don’t want to be dramatic or whine/complain. I just want to get my feelings out and writing is the best way to do that for me. I will start out by saying that nothing about this year has […]
Maybe this is crazy or pathetic or funny or a combination of all of the above, but I am looking for a friend. Specifically – a mom with a kid (s) maybe similar in age to my kid. We could go to Barnes and Noble and sip starbucks while our kids pull a hundred books […]
I never thought I’d be a helicopter parent, in fact I didn’t even know what that was until recently. I read an article about it and it described me to a ‘T’. I hover over Kierra constantly. Let me first say that there are so many other neonatal marfan children effected far worse than our […]
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 […]
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 […]
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 […]
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 […]
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 […]
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