Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Friday, November 18, 2011

Sleep Moving?

This is the best way to describe Meagan's sleep, or lack thereof.  Try to sleep while you are moving... and that's what her evenings and nights are like.  Sigh.  Last night, Meagan was up almost the entire night. I think both she and I passed out at around 5am.  The girl just can't get comfortable.  Her arms and legs will have spastic movements, and her torso will tense and become rigid... sometimes bending at the waist, and sometimes going straight out like a board.  She often has clenched fists and will not relax her hands or fingers, even if I pry them apart. When she eats, or when she lays down, she often holds her arms bent inward and her fists still clenched tight and elbows seemingly 'locked'....  I am really anxious to get to her Pediatrician appointment on Wednesday so we can talk about her movements.  With the EEG out of the way, and the relief of no seizure activity, yet continuation of her spasms, I'm wondering if this does have to do more with her Hypertonia than anything else. I can imagine if my muscles had long periods of being tight or tense, it wouldn't be very comfortable.
  I feel awful for her because there is not much I can do to help her be comfortable.  She will calm a little if I hold her, but even so, I can feel her tense up in my arms-- her body almost becomes like a board.. and her arms and legs will shoot out and shake.  I hope her Pediatrician can offer some answers, or a new path of investigation so we can get to the bottom of it and get this sweetie pie some restful sleep!

Here is a small example of what happens with Meagan's body.  In this video, she had been doing this for about 7 minutes downstairs.. I found my camera and came upstairs to try to catch some of it.  It starts around 23seconds.... everytime, it always starts with her legs stiffening outward, and then she proceeds to have arms involved, waist bending, head bending and several spastic movements with her arms and torso.  After shes' done, you can visually see her body just  relax, and her head goes back and generally, she will pass out for a little bit.

In this video, which was taken last weekend, it starts around 35 seconds and goes until the 2 minute mark.  Same kind of movements - lots of tension, spastic movements, and involving her arms, legs and head. 

Not a happy baby!


  1. Bless her little heart and YOURS! I know that you all are tired! I pray that Meagan and all of you get some rest and that they will figure it all out! HUGS AND PRAYERS!

  2. Oh goodness. Hoping you find out what is going on soon! Prayers!