Ramona Mae

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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So sorry about the communication delay. It’s been a very difficult week, schedule-wise and emotionally. Here’s the status right now:

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Ramona’s appointment with her pediatrician was yesterday. Here’s what we found out:

– Ramona has not gained any weight in the last week. This could be due to a number of factors. Her caloric intake has not been increased since the surgery despite having grown, so she may just need more calories. Also, she’s had a cold for over a week now and has been throwing up a lot. We’ve increased her caloric intake and are hoping the cold will clear up soon.

– The doctor said that he could hear flow and backwash in Ramona’s branching pulmonary arteries! Previously they could hear turbulence in her main pulmonary, but now they are detecting in further on. They seemed excited about this.

– On Tuesday Jane took Ramona to the hospital for some blood work and today they called to say that they found “critical” levels of potassium in her blood. This could be a fluke or a sign of a greater problem so Jane and Ramona are on their way back to the hospital for another blood draw.