Wednesday, February 26, 2014

Lucia and Cephas Surgery Updates

  I promised an update to so many of you so long ago......

It seems my moments keep slipping by me.  So before I close my eyes for the night I wanted to check in here and thank all of you who pray for our family and who love us so purely!  Truly, I feel so grateful for the encouragement many have poured out over Lucia since the beginning of the year.

Lucia......sweet, sweet Lucia.

She is hanging in as best as she can.  She had lost weight since surgery and our ride home from the hospital - 6 hours - from St. Louis was tremendously challenging.  She vomited most of the way and we ended up taking her back into ER in the middle of the night to get her pain level under control to stop her. 
Lucia with Dr. Luhmann...the doctor who did her back fusion surgery
After two very intensive weeks, she finally began to smile again.  Oh how I had missed her smile.  She has several weeks to go yet still in her body brace.  The official date we can toss it out is May 10th.  She just had her check up on February 21st and the doctor says everything is going well. 
With Dr. Tam Williams - her pulmonologist (I LOVE HER!)
She will return to the hospital for her next check in July at which time she will meet with orthopedics about her hips.  Her greatest pain isn't in her back right now, it's actually her hips.  She has bone on bone rubbing and finding her right position is sometimes difficult.  She has some very big goals.  She told her dad at bedtime the other night that she plans on doing gymnastics!  Until then, we are anxious to see her sitting upright.  She can't come higher than 30 degrees angle and she can't tolerate much stretching.  Because her bones are so soft the doctor has ordered she be still to allow her bones to attach to the hardware well.

Cephas also had a big appointment on the 21st with orthopedics and he will be having both of his legs amputated at the knee on April 21st!  We are all excited about this....him too.  His legs have just been in the way of all he really wants to do.  Both legs, but the right leg in particular is so severely deformed with his foot completely rotated, his heel facing up and his shins curved from breaks and malnutrition. 

He is making HUGE strides!  He now does his own toileting and catheter.  He goes up the stairs and uses that bathroom to give HIMSELF baths....climbing in and out of the bathtub.  In order to come down the stairs he has to sit like a V with his feet up by his face and he slides bottom first coming down.  It's slightly terrifying as mom to watch but he really does handle himself well.  I'm not sure its the best thing for his hips but then again I dont know if he can do too much more damage there either.

So the big question everyone wants to know is if Cephas is going to walk with prosthetics.  We don't know.  His spina bifida is at the L2 level.  He has some quad muscles that work in his thighs but both of his hips are dislocated.  There isn't really a way to fix that at this point.  He has no feeling from his bottom on down and no glut muscles.  With all of that said, the doctor made it clear that about the time he tells someone they can't do something, they prove him wrong. 

He will start off with learning to get around and see what he does on his own on his stumps.  After that we will shoot for getting him up. He is so highly motivated!!  So yes we are believing with him for walking and we ask that you would join us in believing for his miracle too.  He knows he won't feel anything and he remembers his spine surgery this last September and feels good about that too.  We are told he will be in the hospital no more than three days and recovery is about 1 to 2 weeks so in the scheme of things it seems really quite short.  It will be all of the physical therapy and work afterwards that will be needed for him to reach his full potential.

Thank you again for praying and I apologize for not updating sooner.