Wednesday, July 15, 2015

Frustration: Our New Normal

Something slapped me in the face the other day.  Hard.  The realization that we have lives too.  I have a job, Damon has football during the summer, Emily has camps, and Jack wants to get out and do stuff too.  It isn't just Lizzy. It feels like we are all consumed by her every minute of the day.

We are having some trouble getting her settled at times.  For example, she loves to shred magazines.  She has always loved to do that.  It is such a mess.  She drools and paper sticks to her face and arms, it ends up in her diaper (?) and she shreds it into pretty tiny pieces.  So here is a picture of her shredding a magazine.....it's probably the swimsuit issue from Sports Illustrated.  That one she can shred for an hour and your won't even know what magazine it was! 


Before she has any issue with her hip she would be sitting upright.  She heard me at the door and put her head up.  This is how she looked when I first walked up.


So you can see her entire body lays almost flat.  If I try to lift her to an upright position, she winces like she is in pain. I called the neurologist today to see about a stronger pain medicine.  The Valium at night stays in her system throughout the day apparently because she isn't having seizures.  Found the blessing!!

I am very frustrated.  To put a diaper on her is painful.  To left her into the tub is painful....for us.  She is 80 pounds of dead weight.  We have a lift but it's hard getting her into it.  We need to make a call to get a sling for it. To carry her to the van is so difficult.  We have to carry her with her body sprawled across our arms with her legs banging to the door frames......it just stinks trying to maneuver her through the house like that.  This is our new normal and we are still getting used to it.  

She cries out in pain when she tries to move herself.  She used to love car rides.  She can't sit upright for too long now.  We can't wrestle with her and that hurts.  She loved to wrestle around on the floor.  Not WWE style, but Lizzy style.  I miss that.  She doesn't smile very much and that breaks my heart.




We have an appointment to see orthopedics and neurology on August 27th.  Seems like it's so far off. I have called for a Physical Therapy consultation and am just waiting for a call back.  Her pain isn't 100% managed but we need to get that hip back to where it belongs.  Pray for our zee zee.  Pray for our family.  The support has been amazing.  

We are open to any suggestions you may have.  As hard as this is right now, we get that it's not as bad as some may have it and we are thankful for that.  We look for blessings that keep us going daily.  

God Bless.



1 comment:

Nancy Jean said...

She is blessed to have you as parents.

Heaven's Very Special Child
by Edna Massimilla
A meeting was held, quite far from earth
"It's time again for another birth"
Said the Angels to the Lord above,
"This special child will need much love"

Her progress may seem very slow,
Accomplishments she may not show
And she'll require extra care
From all the folks she meets down there.

She may not run or laugh or play
Her thoughts may seem quite far away
In many ways she won't adapt,
And she'll be known as handicapped.

So let's be careful where she's sent
We want her life to be content
Please, Lord, find the right parents who
Will do this special job for You.

They will not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for this gift from Heaven.
Their precious charge, so meek and mild
Is heaven's very special child.

LinkWithin

Related Posts Plugin for WordPress, Blogger...