Cadence's Story

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Life with PA begins

Much of Cady's first six years have been spent watching her very closely for decompensation.  We had to be very vigilant keeping an eye on any change in her behavior.  She would spiral so fast that it was important that we recognize impending illness ASAP.  After she was about six, she stabilized out, and life is more 'normal' now.  We don't live daily thinking about her illness.  It only pops its head up every once in a while and only in thought.  I think about it if her fever is too high, I think about it if she has an extended bout of vomiting.  Otherwise, it's more day-to-day life routine around here.  Cady gets up every school day at 5:30 and takes a bath (the Carnitine she needs causes her to sweat a foul smell).  She gets her clothes on and hair fixed, and off to school she goes with two tube feedings.  She comes home around 3:30 in the afternoon and does her homework and ResHab (she has Title XIX Waiver services).  After all that, she hooks herself up to her evening feeding and chills out and watches some TV until it's time to start the bedtime routine.  She takes her biotin by mouth, changes into her pajamas, brushes her teeth and climbs in bed.  The weekends follow pretty much the same feeding schedule, but she gets to go to bed later, sleep in and play more. 
She sees her Geneticist and her Opthamologist (as a precaution, she has no vision problems) once a year for well check ups.  She had been seeing a Cardiologist, but last year he proclaimed her free of any cardiomyopathy (which 50% of these kids get) and now we will only see him if she develops complications.  She sees her local Pediatrician for well check ups as well.
We've had a little excitement in the last year as well.  She was horseplaying on the trampoline (I'll pause for the obligatory parental gasp) with her brother, and she fell backward and cracked her elbow on the support brace that holds the safety net up.  She got two fractures right across the ol' growth plate for that stunt.  And all along I was tickled as punch.  You see, her original prognosis was that she'd never be able to walk, let alone horseplay on a trampoline with her brother.  She was out doing a normal kid thing and got a normal kid injury.  And on top of that, a lot of these kids get osteoporosis.  You see, a lot of foods that are high in calcium are usually high in protein as well, and therefore restricted.  And it is the nature of acidosis to leach calcium from the bones into the bloodstream.  A child with an acidosis is in a constant battle to keep calcium going into the bones, the natural tendency is to rob the  bones.  As far as I was concerned, the simple hairline fractures she suffered were absolutely nothing compared to the shattered elbow she should have had.  She was only in a cast 3 weeks.  Score one for the home team.
At the end of Janary, she also broke a tooth while brushing her teeth.  I had her in surgery the next day, and she utimately had to have 2 teeth pulled and some stitches.  Her teeth were hollow, and just broke apart.  I also found out that the last 5 baby teeth she still has are also hollow and this may happen again.  It'll just be a race to see if she loses them on her own or they go the same way too.
A month after that, she fell in the hallway after getting out of the tub.  She slipped and went right down on her chin, requiring four stitches.  Once again, it had nothing to do with her disease.  It just also happened to occur while I was at a weight lifting meet (I'm a competitive powerlifter now) and my sister-in-law had to run her into the ER.  All's well that ends well, the doctor did a great job stitching her and I figure the first good tan she gets will cause the scar to disappear completely.
So that's where we are today, just going about our 'normal' lives and loving every single minute of it.  Things are busy, I tend to keep my iron in a lot of different fires, but we manage ok.  
I take a very "National Geographic" approach to child rearing.  I believe in turning a kid loose in the back yard and letting them get scraped and bumped and figuring things out for themselves.  I don't put my kids in a bubble, I don't believe that helps them at all.  I love my children to the core of my being, but I have absolutely no plan to care for them after they are 18-22.  I fully expect my kids to grow up to be fully functioning adults, capable of taking care of themselves and raising the next generation.  I want them to be prepared for that.  You can't learn that in a fail-safe, injury-proof vacuum.  That's what I meant when I made the statement on the opening page about raising kids like it's the first day in a string of a very long life.  I conciously prepare them for that.  On the same paradoxical hand, I also am keenly aware that Cady's disease could take her from me tomorrow, without warning.  I cherish every moment she is in my sight or earshot, I want to remember every detail of her being.  This realization is probably the best blessing God ever gave me.  He didn't just give this wonderful sweet child to me, He also made sure I knew what a blessing she is.  I am conciously grateful every single day for her.  And I never have any "What is my purpose" angst.  I know why I was born.  It was because Cady needed me.

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