Trip to the Neurosurgeon

This is the latest post in the series of William, grace and Juliet's journey with hypophosphatasia. 

At our last appointment with the neurosurgeon, in January or February, I essentially told him that the kids were golden and would see him at our next usual check up.

Then, a few weeks later, just before visiting their endocrinologist, I noticed a deep ridge in Grace's skull, under her hair.  Unsurprisingly, it was also prevalent on Juliet.  Not so much on William. So, at their endocrinology appointment, I asked her to request a meeting with the neurosurgeon.  We were scheduled for the end of April.

While this doesn't sound like a long time, I was losing sleep and my thoughts constantly fixated on the worst.

At our appointment (this is the only picture I took*):

The neurosurgeon came in, felt their skull, asked about their activity levels and habits, reviewed their ophthalmology notes** and essentially told me that they are just fine.  The ridge I'm feeling is just "proof that they've had a craniotomy^."

In fact, he said that all indicators were so good that the next appointment was the one that they typically released care to the plastic surgeon, and only followed up as needed.  So, now we will only see the plastic surgeon yearly, cutting down on our appointment schedule!

I felt so much better leaving than going in.  I'm so glad it is just a healing wound, and that the medication is still performing in its silent miraculous way.

later days

*I always feel like Grace has dressed for a party that I was not invited to. = )
**They are always monitoring for intercranial pressure on their optical nerve, as well as keeping their vision in check.
^William does have one too, but his is located low on the back of his skull, since that's where his surgery was performed.

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