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As Monday Approaches

Em is doing amazing!  She does have some discomfort in her lower back where the bar is not attached.  She is off the oxycodone (thank goodness because getting her to take that is torture) and is only taking tylenol and valium.  She still needs lots of pillows to stay comfortable but in between resting she is walking, riding her trike and moving around freely.  We have told her that we are going Monday for Dr. Luhmann to look at that part on the bottom and make sure it's right.  I am afraid of how she would respond if we used the word surgery again. 

We do know that the surgery will not be as hard as the original surgery.  They will open up her lower incision and reattach the hook.  She will have to go under anesthesia again but she will not be required to stay the night.  Our arrival time is 5:30 Monday morning.  We haven't decided if we will go up the night before or leave early morning.  I am concerned about her comfort in the car and having to stop for breaks.  It will also be a very long day for us.

Many people have asked if this is normal, and no it isn't normal for it to break so quickly.  They do unattach, but it is normally when they get toward the end of their length and can't take anymore stress.  So we are very confused as to why this happened and it does make me worry that these may not work for us. 
With Magec rods there seems to be two different outcomes:  they save the kids/or adults life, or they keep breaking or causing infections and are removed.  If they are removed they could go back to casting, but most seem to get traditional growing rods, which are lengthened surgically every 6 months.  We are praying that the doctor is able to fix the rod and it will stay in place while straightening her spine and not get infected.  Since this happened, I will forever be a nervous wreck about it breaking. 

We have so many questions about why this happened and how we are going to prevent it from happening again.  We hope some of those are answered on Monday.  The rods are secured with hooks or screws, but I am assuming at the huge amount of 29 pounds, Em's bones may not be large enough for screws.  The number of hooks or screws also vary and he only used one at the bottom, but again I am wondering if that is because of her size.

We would appreciate prayers for:

  • A healthy little girl come Monday morning
  • A safe, successful surgery
  • Comfortable rides to St. Louis and back for Emerson
  • Safe travels
  • Some normalcy as we move forward
For the third time, we would love for everyone to wear their green on Monday as a reminder to pray for our little fighter as she, "gets back up again."  There are bracelets still available and some extra shirts.  Bracelets are free and shirts are $10.  Let me now if you need one.  Someone is always home with Em. 

We continue to be very thankful for all the love and support our family, friends, coworkers, daycare/schools, and church family have shown us.