Wednesday, September 16, 2015

The next step

Today is a day I have been dreading for a while.  This afternoon, Amelia will start casting on both of her legs.  Not necessarily related to her Loeys Dietz Syndrome, Amelia was born with multiple contractures, at which time they diagnosed her with Arthrogryposis.  This involved her hands, knees and feet.  According to WebMd,  "A contracture is a condition in which a joint becomes permanently fixed in a bent (flexed) position, completely or partially restricting the movement of the affected joint."  (http://www.webmd.com/children/arthrogryposis-multiplex-congenita).  In other words, Amelia's knees do not stretch out all the way, they are bent at a certain degree and will not stretch out beyond that point.  While in therapy, the physical therapist was able to straighten it out more than it was at birth and we tried several different things to straighten them more, but with Arthrogryposis, if you don't keep working with those muscles, they will contract back to what they were orginally.  So because we were never able to get them stretched out all the way, she wasn't able to walk and therefore use those muscles, so in the end it would be a losing battle; in fact, they have already contracted back since we stopped therapy earlier this summer.  In addition to the contractures, an MRI in May showed that Amelia's knee caps were congenitally dislocated, which means they formed way off to the side of her knees.  {This is explained in a little more detail in the last post.} So, Amelia's orthopedic surgeon had to come up with a different plan.

Since we're dealing with two different issues, the first step is to get the knees straight and then perform surgery to move the knee caps and all the mechanics that go along with it.  Amelia's surgeon called me in June to let me know that he had been talking with other doctors around the country and even brought up her case at a "Complex Case Conference" because her separate issues are rare, but even more rare is the combination of them.  Her surgeon calls it a "unique scenario," so unfortunately there is not a lot of experience in her situation, if at all.  So, casting is a start, but he is not convinced it will work.  However, straightening her knees during surgery makes the already complicated surgery of realigning her knee caps even more difficult, so we have to try.  He anticipates the casting to take a few months, but some of that depends on Amelia's cooperation and he's not sure she's going to take it too well.  That's what I'm worried about...  That's where we need your prayers!  Right now, I can only focus on how hard this could be on Amelia; I don't want to have to watch her struggle or suffer.  But, if I'm able to put it into perspective, this is the first step we need to take to get our little girl walking.  We had a break this summer from therapy and appointments, now it's time to look forward to a positive change.  One step at a time never became more literal to me.

I love it how God knows exactly what we need and reminds us of it in ways unknown when we least expect it.  Yesterday Sam was home from school and while outside, he wanted to have a pretend picnic with treats.  He got it all set up and then proudly announced, "Let's pray!"  He started with the Lord's prayer and came to "Give us this day our daily bread as Amelia gets her casts on.  Amen."  I was stopped in my tracks...that's exactly what I needed to hear and it came from the lips of my little boy!  When I reflect on this, my prayer is "Give us just what we need for today dear God, remind me to take this one day, one moment, even, at a time."  What an awesome God!!  

Here's a short video showing how Amelia gets around...with a little music in the background by Elsie. ;)

video

Would you please pray for us today?  Some specific requests would be...
  • that the casting will go smoothly and Amelia will feel little if any pain...
  • that her doctor's hands will be swift so that the procedure doesn't take too long for Amelia to be held down...
  • that Amelia will adjust well to them and pleasantly surprise us...
  • for Nels and I as we long to have her walking, but hate seeing her go through this process to get there.  We hope and pray it doesn't dampen our little girl's spirit...
  • Pray that it works so that we don't have to do surgery on this too. 
THANK YOU!! 

Taken just this morning at my grandma's house

"Hope deferred makes the heart sick, but a longing fulfilled is a tree of life."  Proverbs 13:12