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.