Tuesday, March 27, 2012

A Day in the Life of Baby S, aka Cake Walk

Enjoying some kitty love
I realized lately, that I haven't updated on, or even mentioned our newest addition for quite some time.  This is probably because in many ways, she is my easiest, least complicated child.  And that's saying a lot, when you consider how complex her care can be.  I thought I'd give you a little "day in the life" of Baby S, and you can decide for yourself.

When Little S came to us in June last year, she was taking three heavy duty anticonvulsants for seizures twice daily, a muscle relaxant for spasms three times daily, and anti-drool med to help her not drown in her own spit three times daily, a reflux med, a laxative, and sometimes a sedative for inability to sleep or soothe.  She was also exclusively fed a highly specialized synthetic formula for children who are allergic to EVERYTHING via a feeding pump through her G-tube.  

Baby S is in diapers, and for the most part is easy enough to care for in that respect, when she's relaxed and in a good mood.  When she's stressed or grumpy, it's another story, with legs that stiffen into rock hard positions, pulled up against her torso, or straightened out stiffly with her ankles and knees locked tightly against each other.  Dressing and undressing her is like a combination of trying to dress a Barbie doll and a rubber chicken. 

She is non-mobile, so she must be carried and moved about all day, changing her locations and positions often to avoid damage to her skin and boredom.  She cannot sit up or hold her head up well (think wobbly newborn), so holding her is a challenge.  She's both stiff and floppy at the same time.  And she bites.

She is nonverbal, yet she is packed full of emotions, and frustrations, and opinions.  She is easily bored, and has very little means to soothe or entertain herself.  This means she is frequently irritable and fussy.  She's easy to redirect and cheer up, but nothing holds her for very long.

She is cortically blind, which does not mean she can't see, but that her sight is limited by abnormal brain function.  We know she does not see well at distances or in low light.  She also seems to prefer certain things to be in certain spots in her field of vision.  So again, she gets easily bored when things don't line up just so for her.

For the first several months, Baby S screamed and raged every.single.day.  This was because she is a human being, and no matter how delayed she may be, she knew she had been removed from her home, and placed into a strange place.  She missed her Mama, and of course she would.  She is not a goldfish or a piece of furniture.  All day long we struggled to keep up on the endless round of meds, feedings, exercises, diaper changes, doctor visits.  All night long we listened to S fret, and fuss, and scream.  Her brain is by no means normal, and it did not seem to process the need for sleep.  The only time she slept was when she would be knocked out cold by her potent cocktail of drugs.  This gave us a few hours of respite in the mornings and evenings, but that was generally it.  The rest of the day she fussed and raged.  The rest of the night she fussed and raged.

And then things began to change.  The very first big change was that Little S began to sleep more.  Some nights she actually slept right through.  For every good night, we could be sure of a bad day.  With a full night's sleep in her tank, she had plenty of energy to fight us all day.  For every bad night, we could expect a quiet day, as she lay back in her chair, dazed and dopey.  But over time it began to smooth out.  Most nights she slept, and when she was well rested, her mood improved during waking hours.

More things began to change.  We began taking her wherever we went.  We included her in the family activities.  We let her taste bits of food.  We made her sit up and be engaged with the world around her.  We reprimanded her sternly when she had hissy fits.  Or when she bit someone.  In short, we began to see and treat her as a little girl.  

Lately the changes have been huge.  She is no longer pump fed her funky formula.  Instead, she is fed plain old normal food that I puree and squirt into her G-tube with a large syringe.  She gets tastes by mouth if she wants them.  She has grown about five inches and gained about ten pounds.  She is being weaned off her cocktail of meds.  Currently she gets two anticonvulsants, but another one is soon on its way out.  She is taking about 60% less muscle relaxant with no noticeable problems.  Her anti-drool and reflux meds are gone.  Her laxative is reduced by about half.  She never takes sedatives.

And it has been crazy lately.  This poor little tyke needs kiddie rehab.  It's shades of the first few months, with no sleeping, and constant misery and anger.  Learning to live outside the strange little boxes these drugs make of her days, is very hard on her.  But if we can do it and keep her healthy, we want to.  The drugs have massive effects on the quality of her life, her ability to learn, and her physical health.

Next on the horizon is major orthopedic surgery to reconstruct her malformed hip joints.  It's pretty typical stuff for kids with CP, but scary new territory for us.  So if you think of us and Little S, throw up a prayer.  We so want her to be able to reach her full potential, and to be a happy contented little girl.  Pray that we will have the diligence and wisdom needed to care for her.

As for whether she is the easiest of my kiddos?  Well I will say this much.  She can't get up out of her chair or bed and hurt anyone or break anything while she rages.  She can't form words, so she can't cuss me out or lie to me.  She keeps her refuse neatly in her diaper.  Yes.  Absolutely she has many of the same trauma issues that many adopted children have.  But she is confined to glowering at me, crying and screeching, and a bit of intentional drooling.  After what I see in this game, I say, "You, Baby S, are a cake walk."  An absolutely adorable, sassy, little cake walk.

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