So Sorry!

photo (35)I kind of just left you all hanging!  My apologies.  It has been a crazy busy week trying to catch up from being in the hospital and everything else that always seems to happen all at once.  We do have some very good news to share!  Let me start at the beginning just in case.  On Friday we conferenced with our primary doctors about some concerning activity we had been seeing during Hope’s meals.  She was having myoclonic jerks in her arm and then began having episodes of zoning out that highly resembled absence seizures.  They had written us a referral to a neurologist earlier, but her episodes were progressively getting worse, quite quickly, and everyone agreed that we should go to the emergency room to get her looked at immediately.

Early the next morning we left.  Because her episodes only happened at meals (and there were no other meals that day at this point), we felt comfortable waiting.  We also knew we would be able to trigger her episodes for the doctors in the hospital for observation.  A girl’s gotta eat, right?!  So we spent two days there.  We came away with more questions than answers.  Her CT scan revealed a brain bleed which may or may not be causing her episodes.  An EEG showed no epileptic activity, praise God!  So she is not having seizures, exactly, though she is high risk for them at this time between her myoclonus and the brain bleed.

We are still not sure what is causing the bleed or how long it has been going on.  They said it could be several months old or even older.  They also found evidence that it is still bleeding, at least a little, but don’t think her shunt is causing it.  Without any other information we can’t really do anything about it at this point, and she’s not in immediate danger.  So we are going back in a couple of weeks to reevaluate the situation.

After getting home from the hospital we began to see some slow improvement in her episodes.  She is still having them, but they seem to be slowly tapering off.  Another praise God moment!  We have some theories as to what is going on, but we really don’t know, and maybe we won’t ever know.  But the important thing is that right now she is healthy and just as sweet and joyful as ever.  We had a scare over the weekend that we might need to do immediate surgery for her bleeding, what a terrifying thought.  I am more grateful than ever for the health of my children.  Lord thank you for preserving our family through this little bump!  Lots of other things to update, but for now it’s bedtime.

Christ keep you all.

Comments

  1. So glad she is improving!

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