Sleep.......

This is where Zach hangs the cannula for his oxygen....funny.

Sleep

We all need it.  Some more than others but without it, functioning in our daily routines can be challenging.  Zach has had sleep issues since birth.  When he was a baby, in an 8 hour span of "sleep" he would stop breathing between 80 and 90 times.  They diagnosed him with Central Apnea (brain stem related) and he was put on oxygen.  We now know that Zach was having the Apnea's because of the lack of PTH in his body.  Zach is still on oxygen and it  does help with the apnea's.  However, 7 years of undiagnosed PTH deficiency (hypoparathyroidism) has left him with damaged nerves and exhausted muscles. 

What does this have to do with sleep?  Well Zach has Periodic Limb Movement Disorder...its kinda like Restless Leg Syndrome on steroids.  So Zach's body flexes ALL... NIGHT... LONG.

To get an idea of what I'm talking about, tense all you body muscles (especially your legs) hold them tight for 3 seconds then release them for three seconds.  Keep doing this rhythm for as long as you can. Now imagine trying to do that and fall asleep and stay asleep.  That is what it is like for Zach every night. 

It is hard to lay beside him and see and feel his body do this.  Seeing him wake up over and over.....never being still.  Usually he looks his worst first thing in the morning.  When our other kids are Rosy cheeked and sleepy eyed, Zachy's face is pale and so dark under his eyes.  We were warned that the PTH injections may cause more severe muscle and bone pain.....tada.  This fall he will have another full sleep study done and compare it with the one from November of 2010.  This will be done to help us determine a way to help Zach sleep better.

Sleep study prep November 2010

We are grateful to God for the love and caring support we have from so many friends and family.  For the blessings that have come from the genuine concern of others.  We are thankful for God's provision and for the lessons we have learnt in the process. We are thankful for the Doctors here and In Maryland who are eager to help Zach with his rare disorder.  Most of all we are so thankful because we know that one day Zach will have a body that is strong and whole...not lacking anything.  That God in His Word promises a place where there is no more sickness, no pain and no parting. 

The Promise

I never said that I would give you silver or gold
Or that you would never feel the fire or shiver in the cold
But I did say you'd never walk thru this world alone
And I did say don't make this world your home

I never said that fear wouldn't find you in the night
Or that loneliness was something you'd never have to fight
But I did say I'd be right there by your side
And I did say I'll always help you fight

'Cause you know I made a promise that I intend to keep
My grace will be sufficient in your time of need
My love will be the anchor that you can hold on to
This is the promise, this is the promise I've made to you

I never said that friends would never turn their backs on you
Or that the world around you wouldn't see you as a fool
But I did say like me you'll surely be despised
And I did say My ways confound the wise

I didn't say you'd never taste the bitter kiss of death
Or have to walk thru chilly Jordan to enter into rest
But I did say I'd be waiting right on the other side
And I did say I'll dry every tear you've cried

'Cause you know I made a promise that I've prepared a place
And someday sooner than you think you'll see me face to face
And you'll sing with the angels and a countless multitude
This is the promise, this is the promise I've made to you

So just keep on walking don't turn to the left or right
And in the midst of darkness let this be your light
That hell can't separate us and you're gonna make it thru
This is the promise, this is the promise I've made to you
Oh, this is the promise, this is the promise I've made to you

http://www.youtube.com/watch?v=k2Irtr3sbBM