Well, we’ve heard from the surgeons. They’ve agreed, as we expected, that Ramona is not yet ready for her full repair. They feel she is stable for now, and since her arteries do seem to be growing, they have recommended that we wait for six months and then take another look.

There will be an ongoing discussion about whether we’ll do a CT, MRI or angiogram. They would all require general anesthesia, but the angiogram would also be a surgical procedure. She will see the cardiologist again in two months.

I’m very pleased that it looks like our summer is going to be a lot more laid back than last summer. I’m cutting back on some of her therapies until the fall (she is testing at or above her age level in all areas except PT) and that should give us some more time and flexibility to enjoy the nice weather and all that it brings. Since both the babies are now napping at the same time, we are no longer pinned down at home all day. It’s been great!

Please continue to remember us in your prayers. It feels like we have reached a much needed oasis in our journey, but in the back of our minds is the awareness that at some point we will have to pack up and make our way back into the desert of the unknown. Here are a few shots of the boo-boo’s. Ramona is so wiggly now that it’s next to impossible to take her picture, but here she is with her leg-warming-knee-guards. Simon will smile on cue now, especially if I tell him to say “hi” to Daddy, which is what he’s doing here.

Love, Jane.

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