Ramona Mae

Ramona had a speech therapy appointment this morning and it looks like things are going in the direction of having a G tube placed. This would be a tube placed directly into her stomach through her abdominal wall. It is usually an outpatient procedure.

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One of the pleasures of my childhood was walking in the woods in springtime. My mom knew all the names of everything and we made a ritual out of spotting each thing and remembering it’s name. The spring beauties, the solomon’s seal, both true and false, jack-in-the-pulpit, red trillium and the great white trillium, my favorite.

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I remember that when Ramona first got sick going to public places was confusing. I felt, especially surrounded by strangers, puzzled that the whole world hadn’t just stopped turning and seemed to be progressing pretty much unchanged. So although it was nice to get out and be “normal” for a while, I was always happy to return to my little cocoon where everyone was talking and thinking about Ramona.

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Just a quick post to let you know…

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Simon and Ramona are starting to interact a little more day by day. He’s showing more interest in her as she gets more and more active, and she’s getting better at showing with her squeals and squeaks the interest she’s always had in everything Simon.

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Well, she’s five months today!

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So, Ramona does not need a G-tube, thank God. The ENT who spoke with our pediatriatricians, who are awesome and always take my calls right away, said that they recommend simple saline drops to try and soothe and heal whatever irritation is causing the bleeding. We will also switch the NG tube to her other nostril. That one gets the big “DUH”. It just never occurred to me, but I’m sure will make a big difference. We will also set a humidifier up in her room.

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Jane just called and asked me to post an update. Ramona has been spitting up some blood, and that’s not okay. (more…)

When Simon was born I was endlessly correcting people who would say, “He’s adopted”. I would say, “He was adopted. It’s how he came into our family, not who he is.” This same phenomenon is happening with Ramona. Several people have innocently inquired, “Oh, is that because she’s DiGeorge?” And I say, “Well, the fact the she’s been diagnosed with DiGeorge might be related to…”

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Well, the votes are in: Desty, Nicole and our our scale all agree. Ramona is fat. Really big and fat. Read on…

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