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Wednesday, December 28, 2011

I have not been here in a long time.....

Life happens and this particular blog fell by the wayside. I kept meaning to come back and update but time just got away from me. I briefly thought about deleting what was here and starting over since I would like to use this space to focus on working through everything going on with my daughter but decided not to. Even though there isn't much here, it is nice to remember that once upon a time, life was not an endless round of worry and fear and doctor's offices!

A quick overview:

My oldest is six, in first grade, and recently diagnosed ADHD. No, we are not taking any meds for this--he is getting some behavioral therapy at school and I am trying to get an appointment at a clinic about forty-five minutes away that also does behavioral therapy as we would like to make medication a last resort. I am open to medication in the future if necessary but with all of the not-so-great side effects that come with, we'd like to give the alternatives a chance first. However, his hyperactivity at home and at school certainly does make everything a little bit more difficult :p

Next up is the two year old. He's two. I'm not sure much more needs to be said LOL

And then there is our baby, three months old, in congestive heart failure due to two heart defects and an artery that isn't growing properly. We live month-to-month, wondering if this cardiologist appointment is the one where we have to schedule open heart surgery for our tiny little girl. She is on medications to help her breathe and at night I lie there and listen to the raspy little sounds she makes as she falls asleep until she is relaxed enough that her breathing eases and goes almost silent. I worry over every cough and hitch, wondering if now is the moment we rush her to the hospital. Sometimes I think my worry is out-of-place because overall, she is doing very well. She is alert and active and happy. She smiles and laughs and surprises doctors with how strong and ahead of her milestones she is. But she is barely growing and without her medications, her heart races and she struggles to breath. Her heart murmur from the blood flowing the wrong way through the holes in her heart is so pronounced you can hear it with your bare ear--instead of the steady thump thump thump, you hear whoosh whoosh whoosh.

People tell me often that they just KNOW she'll be fine so I shouldn't worry. In many ways, I understand why they say things like this--they desire to be reassuring, to ease some of the pressure and fear that worrying about a child with a potentially life-threatening condition brings. But they can't know, no one can, and sometimes it just makes me angry that they say such things. I'm sure I have been guilty of it in the past as well--you just don't think of it the same way before you are in the middle, you know?