Wednesday, April 15, 2015

Day 2

Day 2 at LeBonheur...

Not much good news to report.  :(  No seizures, Elle's been pretty agitated and just put herself to bed for a nap.  Last night, she woke up once or twice every hour, but fortunately went right back to sleep.  Unfortunately, she was waking up because she was caught in her wires and uncomfortable, not due to seizure activity.

I spoke with her doctor a couple of hours ago and he was very vague about going home today or staying.  I'm assuming we will be here another night - and really, I want to stay at this point.  As much as I want to go home, I don't want this stay at LeBonheur to be all for naught.  So, please pray for seizures!  And pray this evening and night she will do what she typically does at home...the fits, the little seizures, etc.

Also, please pray for Milla.  She has a cold of some sort - right now it's just severe congestion.  Believe it or not, this is the first time she has gotten sick in about a year and a half.  In other words, she has never been sick along with uncontrolled seizures and/or this far into her disease progression.  This is very worrisome because she has an extremely weak cough and is highly susceptible to pneumonia.  Also, infections can make seizures worse.  

So, I'm worried.

Also, I spoke to our doctor today about how Milla is doing in general (despite her cold) and he told me that she is pretty much maxed out on her current seizure medications.  Along with the increase in seizures, there is much happening with her that is her disease and, therefore, not much we can do about it.

I'm fighting a lot of fear and anxiousness right now.  Lots of fear.  I feel like I'm caught in crashing waves - like I keep getting pushed back down under water, beaten up, gasping for air only to be pushed back down again.  Please pray that this crushing fear will be driven out.  I know it is not from the Lord.  I am only human, so I know fear and sorrow will be ever-present on this road, but I don't want to drown in it - I don't want it to own me.

Thank you, thank you, thank you for your prayers and help this week,

1 comment:

  1. Dana, I just wrote a long comment that I think got deleted. The basic story is that I found your blog through the NYC CRU article your SIL wrote. I, too, have a four year old with Batten disease. She has an older sister (adopted) and a younger brother (not yet tested- we're not ready for it). If you would like to know more about our story, you can check out our blog We haven't updated it in awhile because we just moved to Norway. Saying a prayer for abundant grace for you right now- I understand the very real and desperate need for it.