I know this. I think most people know this. I've made a few posts about this, and knowing this and still not liking it.
Anyway.
Norah has an appointment with the nephrologist on the 9th. We're going to poke around her kidneys to see if that's what's causing her hypertension. I don't want Norah to have another specialist.
Waaaaaaaaay back when, I said a heart condition didn't seem as big as the cystic hygroma. It didn't, then. I don't think I realized the gravity of all the other problems that could be lingering from the CH and I regret that now. I stopped researching other lymphatic malformations and focused solely on her heart. I'm glad I know as much as I do, but I wish I knew more. I wish I knew to expect more. There was no reason (ok, other than heterotaxy) to think she'd have other problems.
I don't like that my baby isn't perfect in the typical sense. She IS perfect, even if only to me, she is perfect.
She looks happy and healthy. Her heart is making improvements, as slight as they might be, on it's own. I hate that people look at her and see happy, healthy baby and then assume that what's "wrong" with her is no longer wrong. She isn't sick, but she isn't completely healthy either. I no that makes little sense and it's just so difficult to explain. I don't want people to treat her like she's sick or fragile, but she is. We do need to keep a closer eye on her health and limit some of her activity. We do need to go to the doctor more frequently.
I know she doesn't know that there's something different about her, and I don't want her to grow up thinking she's different, and I'm learning as best as I can to make sure that doesn't happen. I don't want her to think that she needs to be ashamed of her conditions either. Or for other people to be afraid that she's contagious.
ugh. this turned more into a pity party post than I intended.
so... pictures :)
they keep me on my toes!
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