Ramona Mae

Andy was away for 4 days touring with Mucca Pazza, a circus punk marching band he plays with (this is a photo of one of their New York gigs!). I was expecting to be exhausted by his absence but arranged for so much help while he was away that I ended up getting more sleep than I’ve had in months and re-organizing the pantry. Go figure. Andy did not fare quite so well. He slept in a sleeping bag and stayed up till the wee hours each night. But he had a great time and I’m so pleased that he was able to get away for a few days to do something he loves.

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Ramona saw the cardiologist today for her first post-op appointment. They discontinued her lasix, did an EKG and an echo.

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I’m not in a posting mood lately. Everything’s fine. Ramona had her first speech therapy appointment last week and it went very, very well. The therapist just gave her this space age looking spoon and voila, the rice cereal just slid right down her gullet. Who knew.

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Our little fatty weighed in at 18lbs 12oz today. She’s one day past eight months old and doing well. It’s now six weeks post-op and we are cleared to lift her up under her arms again which will give her lots of opportunities for new tricks, like bearing weight on her legs.

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Ramona saw the neurosurgeon today. He doesn’t usually see patients before they have their MRI’s so his first question was “What are we doing here today?”. I told him about the geneticist’s concern about her dimple and how the MRI had escalated from sedation to general anesthesia. I told him I wanted someone expert to take a look before we put her through that. He said “Well, let’s take a look”.

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I am happy to report that Simon has been peeing in the potty.

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I am having the hardest time shaking my anxiety about Ramona’s spine. The MRI had to be rescheduled for August because they decided she needed to be under general anesthesia for the test. We will see the neurosurgeon this coming Monday for a consult. But in the meantime I just can’t stop thinking about it.

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We had a great vacation. The babies traveled well and slept pretty well too. The only hitch was their complete and total terror of the water. And Simon is afraid of sand. It didn’t occur to me that our city babies might need time to adjust to the lake experience. But we still had a ton of fun.

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Making choices for your child’s future is a challenge for every parent. In Jane and Andy’s case with Ramona it feels like they are constantly getting new information about her health and having to make choices at an alarming rate. Today is one of those days. (more…)

Our vacation is in cyber-blackout country, so I wanted to post some pics to tide you over 😉

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