If you are new here, you may not have heard about my daughter Amelia, who survived a life-threatening brain infection at age 3. After her infection, she suffered a second assault on her tiny body...an auto-immune reaction to the infection stripped her brain of it's protective fatty myelin coating that insulates all the nerves. After completely losing the ability to walk or sit unassisted, feed herself, swallow and chew, and suffering severe speech, hearing, and vision losses, she made a dramatic recovery that can only be credited to God (with help from a hefty dose of steroids for 6 months straight). To read more about Amelia's original illness, click the tab at the top of the page above my blog name.
Amelia was hospitalized today to investigate her one remaining issue: a severe seizure disorder that continues despite high doses of life-altering anti-seizure medications. Amelia is doing great in the hospital. God granted us a delightful 2 full hours playing in their amazing play room before Amelia had to be confined to her room.
What a set-up for a kid trapped in the medical world! Every piece of medical equipment you can imagine - down at her level to see, touch, and try!
Then the hard part - getting "wired up" to the machine that reads her brain waves! This involves scratching the scalp, scrubbing with rubbing alcohol (ouch!), attaching electrodes with an alcohol based glue, and then taping them to the scalp. Quite a challenge with this kid, who falls into the "hair gifted" category!
She had about enough by the time they were finished, but remained her sweet self, much to the amazement of the technicians attaching the leads to her head. What a difference child training makes in the happiness of the child, no matter what the circumstances! I have recently discovered the timely and sweet mothering blog of experienced mom Juana Mikels. Take a look - great resource on gentle but Biblical discipline. Although I disagree with her stance on infant schedules - as I am a staunch and out-spoken advocate of feed-on-demand and attachment parenting of newborns - she lends a voice of experience that gives many great practical tips about things like time-outs, quiet time in bedrooms even for small children, and organizing your home (from my series this week, you are probably getting the sense that I need all the organizational tips I can get!!).
All done, simply sweet, even though she had a seizure while they were "wiring her up". I think she looks like a delightfully girly and beautiful version of a Teletubby. Her sisters were pretty smitten with her sweet new hat as well! We ask for your prayers. Amelia will be in the hospital for 3-5 days unless we miraculously get enough seizures captured sooner. We are confined to a 10x10 room in the hospital - and connected to wires. Quite a challenge for this active 4-year-old and her mother!
Being in the hospital somehow makes me long for the much easier days I lived as a single woman and nurse. Every beep, every smell, sound, the lay-out of the rooms...it's all still as familiar as a comfortable pair of jeans. It is hard to be on the other side of the coin...the patient, handcuffed - even though I usually know what to do - to help with the actual "work" here. It certainly is a different life God has called me to these days. I have learned so much about Him being in these shoes...like one of my favorite Sarabeth Geoghegan songs says: "I don't want to go back to where I was/I want to stay right here/with You" (Opening, from the album Tired of Singing Sad Songs).
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