Sunday, January 22, 2012

What She Has

The short backstory is:  when Lilah was admitted to the ICU (the first time) and her cardiologist (who we had never met) met us up there (on a Saturday) to tell us that she not only had an ASD (hole), but also a VSD (another hole), and LVNC (something wrong with the muscle)....I knew right then and there that she had a syndrome.  Because of my background in speech therapy, I knew that a child doesn't present with more than one structural anomaly by "chance" (usually). I think I blacked out at that point, because I only remember tiny bits of the next few days.

Anyway, a couple of months went by and we never pursued a 'diagnosis' because we were, literally, busy trying to keep her alive.  But, the Lord had provided a pediatrician for her who also 'happened' to be a genetic specialist and he knew exactly what to look for--so, he had specialized labs run for a specific syndrome during one of Lilah's hospital stints.  He did not tell us what the syndrome was he was looking for, only that the labs had been sent.

I am nothing if not practical and direct, which I say because the next part of the story is highly unlike me.  I am not prone to imaginative fears, or intuition, or any kind of 6th sense.  I do not Google unknown quantities-- 'number to pizza place', yes --'causes of a cough', no.  But, the night before a scheduled doctor visit (at this point we went 2x/week), I was laying in bed unable to sleep, and thought I'd surf the web. :) I typed what I thought were her biggest 3 symptoms into the search bar and the first thing that resulted was the name of some syndrome I'd never heard of--and a picture of a child that looked an awfully lot like Lilah.

You'll have to come back for Part II, because I just heard the princess chuck her glowworm out of her crib--which, in Lilah-speak, means "mommy, get in here now!!".  Duty (& privilege) call.  More soon....

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