spikes and waves

we are winding down from a very full day in the hospital.  we are here for a 2-4day VEEG (Video EEG Monitoring Test) that could keep us here until friday (or if things are looking good after tonight we may go home tomorrow).  it’s almost 11pm and Mikisa finally gave up fighting sleep.  it’s been a long and exhausting day.  really, it went a lot better than i thought it would…the past few EEGs have been torture so i was fearing the worst.  but Mikisa seems to be (somewhat) getting used to this routine and is figuring out how to charm the nurses and doctors.  it helps that our room is a little bigger so she can move around more.  she even got 2 hours in the playroom!

i remember the last time we were in the hospital for one of these tests…i felt like my world was caving in on me.  i remember pinning her arms and legs down as she kicked and screamed while they were putting the electrodes all over her head.  i remember her hitting, kicking, scratching and biting me every time i got near her because she was so mad that i had allowed this to happen to her.  i remember staring at the computer screen as she had continual spikes and waves while she slept and just sobbing in fear of the unknown.  this time around, it’s different.  i don’t really expect her EEG will have changed a whole lot, but i know my attitude has changed a lot. and it’s making so much difference! i also know that Mikisa is continuing to defy the odds and has made a lot of progress, so i am choosing not to focus on her diagnosis but rather to believe that she will continue to improve.  and…i think that we have finally found a good neurologist who seems to really know what he is talking about (4th time lucky).  so that’s a huge relief!

tomorrow we will find out how her overnight EEG is looking, and we will discuss where to go from here with her medications.  please pray with us that we will get some answers.  we are looking forward with hope.  God’s mercies are new every morning.

Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. (John 14:27)

Mikisa’s favorite part of the day is the hospital food.

she also really enjoyed painting in the hospital playroom

they “unhooked her” for a few minutes so she could walk around! she was so excited!

we had a wonderful visit from some wonderful friends! thank you Emily for brightening our day:)

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3 responses to “spikes and waves

  1. Wishing these tests had been available to us 15 years ago. Keep the faith — she is a beautiful girl.

  2. I can’t wait to show Bethany these pictures! She will love to see another girl with ‘Repunzel hair’, lol.

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