Amelia in September, prior to encephalitis.
Amelia 2 days before hospitalization for encephalitis - already sick.
Amelia on day 8 of hospital stay #1.
Amelia after discharge from hospital stay #2.
Amelia during hospital stay #3.
I did a lot of research two days ago, and found much that was useful. A lot of it is scary, too. I found some helpful information about the effects of encephalitis on behavior at a UK site. The "tips" way down at the bottom are especially helpful. Aaron and I had a parenting "powwow" and came up with a list of strategies to deal with Amy's changing needs from a training/discipline perspective. I believe she is currently functioning around a 12-18 month level, which requires a massive adjustment in how I teach her, correct her, and direct her through the day. In the past few days, since integrating more rest and quiet time into her routine, and changing my parenting strategy a bit, there have been significantly fewer tears of frustration for her. I feel a sense of victory that, at least in this small way, I am able to help her deal with her frustration and pain.
Some specific prayer requests for Amelia as her healing and illness progresses:
- Regaining behavioral skills, such as an understanding of permanence, long-term memory skills, cause-and-effect relationship, impulse control and lessening of separation anxiety.
- Improved vision and eye tracking.
- Improved small and large motor skills, especially walking and running, hand-eye coordination, coloring/writing/copying skills, self-feeding, self-toileting, and dressing.
- Protection against further head injury during times of poor balance.
- Proper immune function as she recovers, particularly protection from conversion to multiple sclerosis. Amelia is currently teetering on the "edge" of this immune function disorder, which would be very debilitating for her if it develops at such a young age.
- Joy in relationships, especially with her siblings and parents.
- No further signs of infection or demyelination of her brain.
- The need for other therapies or treatments would be abundantly clear. Right now, doctors are proposing eye treatment (such as an eye patch), plasmapheresis, immunoglobulin G therapy, occupational/physical therapy for the relearning of lost skills, and repeated therapeutic spinal taps to remove excess pressure caused by her inflamed brain. It is hard to sort through all that as a parent, and decide what needs to be done at this moment in time.
1 comment:
Stricken afresh, but washed in love and hope and faith. I WANNA GO HOME. I WANNA GO HOME. OH, LORD, I WANNA GO HOME.
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