The light beckons...

The end of the tunnel glimmers ahead of us, sparkling with the light of a little girl riding a trike around 2 hospital units. I didn't realize that riding and walking utilize two distinct areas of the brain. The freedom she feels when she's pedaling is intoxicating. She gets tired quickly, but she is tallying up some serious miles despite the fatigue, giddy with the delight of autonomy and exploration after 9 days cooped up in the same 10x13 hospital room.

Amy's hand-eye coordination is improving as the eye-jerking (nystagmus) disappears. Yesterday and today, there were just a few brief periods when very mild nystagmus was noticeable - the rest of the time, it is gone altogether. The part of her brain that is inflamed, the cerebellum, controls the movements we don't think about, like depth perception. It also controls those subconscious movements like reaching, grasping, lifting, and moving an object through space. The good news is, "occupational therapy" for 3 year olds is play, play and more play! We are painting, sorting, stacking, turning pages, drawing, cutting, and manipulating. It's great fun for both of us, and it is beyond fun to see her daily improvement. I really have restored hope that her deficits won't be permanent as I watch how quickly she is regaining function in some areas. However, a sobering note is found in the hundreds of stories I've read from parents of children who have suffered her condition: future infections, partial relapses in terms of personality changes and clumsiness and loss of small motor skill. Speech, memory, and balance are affected whenever the child is sick or overly stressed. That will be something to teach Amelia to deal with as time goes on.

Amy's last I.V. was pulled this evening. They were only lasting about 24 hours with the caustic antiviral medication being infused every 6 hours. The medication has been switched to oral form overnight, and we will discuss the plan with the peds team tomorrow morning. I am hopeful they will feel she is ready to go home in a day or two. As long as I have a really clear plan of attack if she gets worse again, I think I am ready to say she really is getting better! Seems too good to be true. God is merciful.

It is also possible that they will recommend further testing, as some of the conditions they are still considering possibilities can recur now or even months or years in the future. Isolating an organism may be life-saving or function-sparing in the future. In addition, Amelia will have to return for appointments to evaluate her general recovery, her motor skill recovery, her opthamologic health, and for a full immunology work-up to determine whether there is an underlying reason for her coming down with meningitis twice in 9 months.

1 comment:

Angela said...

This is such good news! Praise the Lord! :)

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