On to the Eves knees. So what we know to date, without our big appointments this week is that she is aspirating again on the formula she is being fed through her g-tube. This happened when she was 3 months old, which is why we initially placed the feeding tube. This time we don't exactly know why she's aspirating, but we do know that it has caused a full blown pneumonia. We are on oxygen at home, breathing steroids, oral steroids and a heavy antibiotic. She seems to be doing better than a few days earlier and I have eeked out some old school Evey smiles. We also moved her G-tube to a GJ tube. Nate so wisely told me it's no longer the "gangsta tube" it's the "gansta-johnson tube". Boo-yah! What that means is she's getting food directly into her intestines and not her stomach, which hopefully should prevent the vomiting spells. This week we are meeting with the ENT and the Orthopedist where we will await the scoliosis plan and see if she is swallowing properly. We also added doctor #16 on to the magic specialist list...wait for it...a pulmonologist. That doc will keep an eye on her lung function because it looks like her scoliosis is pressing on her lungs so she's losing some air capacity...awesome!
We are quickly approaching Evey's 1st birthday next week and because she can't hug me, hold onto me, or babble at me, we've developed some secret signs. My favorite thing to do with Evey is to do high fives. When she's happy and I want to know if she's okay, I hold out my hand and she reaches up and claps my hand over and over. I never thought a high five would be the key to my heart, but it ends up that's all it takes during the long days and sleepless nights to remind me of what a privilege that it is to raise this glorious, pure, little lady.
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