News On the Baby…

No, this post in and of itself isn’t any *new* news…but I’m “pinning” it to the front of the blog to make it easier for folks to track the whole story. I’ll tag new posts to this one as we get results and info. Thus far: The Ultrasound… The Followup Appointment… So What Caused Our […]

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The Hardest Part…

A few weeks ago in this journey, I probably would have said that the hardest part was the waiting. But I’m a fool. It’s not. And while the diagnosis was hard, it wasn’t the hardest either, and was buffered with the other possible outcomes which would have been far more difficult. Knowing the some of […]

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The Official Medical Report…

Mail came today. And with it, the official medical report and diagnosis. This, friends, is it…I’ll do through it below. Sacral: refers to the position of the lesion. In the picture below, it’s the lowest area. Myelomeningocele: the most serious form of spina bifida. In babies with a myelomeningocele, the bones of the spine (vertebrae) […]

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Insurance and Latex and Bumbos…Oh My!

Since the people want updates, the people will get updates! Insurance: we got notice that they disapproved the pre-authorization for the fetal MRI. True to the efficiency of bureaucracy (thanks Obamacare!), they rejected it after the fetal MRI. But it’s no cause of concern, really, for three reasons: The MRI has already taken place. It’s […]

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Maybe This is Harder Than I Thought…

By the title, I am referring to the situation with Evanna’s diagnosis and prognosis. What I’m not saying though, is anything different than what I’ve written earlier…that out of all the possibilities we’d been facing, the diagnosis really was a relief to us. Spina bifida is a known entity, other possible outcomes weren’t. With spina […]

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Evanna’s Prognosis…

To start this post, a quick lesson: diagnosis refers to the medical what; the prognosis is the medical opinion of prediction of what that what will look like in the future. In Evanna’s case, that what–that is, the diagnosis, is spina bifida. Her prognosis, then, is what they expect this to look like for her […]

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What is Spina Bifida?

With Evanna’s diagnosis, there have been enough questions that I thought I’d do a series of posts about it, to help with understanding the condition and expectations. The term is Latin for ‘split spine’…and it is a birth defect in which there is an incomplete closing of the backbone and membranes around the spinal cord. […]

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The Diagnosis Is…

Today was a very long day, and not just because of the drive up to Seattle, or the three coordinated appointments for the fetal MRI, the pediatric neurologist, and the fetal echocardiogram…but there were several weeks of build up to this day. And to be frank, we were bracing for the worst after our last […]

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One Day More…

Why, yes…that is a line from Les Misérables. We love the soundtrack and the movie (and the sountrack FROM the movie as well). But more to the point, the lyrics fit. By this time tomorrow we’ll have gone through our three appointments up at Seattle Children’s…and after the meeting with the pediatric neurologist, we’ll know […]

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Four More Days…

After all the waiting the past weeks, the appointment at Seattle Children’s is finally happening. Appointments, actually…the ultrafast fetal MRI, then the ultrasound, then the neurologist…all for the purpose of getting more (and more detailed) information on Evanna’s development. So that the doctors can then discuss with us the word that was initially really difficult to […]

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To Be An American…

With the 4th of July coming up tomorrow, have been thinking a lot about being an American. But rather than it being some sort of political post, or a post full of the kind of cliches that come out in droves this time of year, I want to give a personal perspective from the time […]

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