Aaron's full casts are off!

Two days ago Aaron, Ethan, Evan and I made the trek up to Philadelphia again.  Yesterday morning Aaron had his appointment at Shriners and got his full casts off.  Before I get into yesterday, I will back up a bit and explain the post-surgery process up to this point.  But first, here are few pictures I took of Aaron before we left the house on Monday.  Check out the flexibility!

Aaron's first post-op visit was around two weeks after the surgery.  We knew we would be going back up to have him start what they call the "wedging" process.  Immediately after his surgery, the doctor came and explained to me that although they were able to sufficiently lengthen the muscles in his legs, they were not able to completely straighten his leg.  Since for so long his legs have had these contractures and from crawling so much his whole life, his knee joints would not straighten out all the way.  The plan was to come back in two weeks, take the bar off that was holding his legs apart (keeping his abductors from tightening back up) and saw around the underside of his knee to break the cast open and put a plastic wedge in place to straighten the joint out a little bit at a time.  Yes, this meant weekly visits until his legs were completely straight.  The doctor was very impressed with how far he was able to open them up on the first visit.  It did cause Aaron some joint pain over the next couple of days.   Thankfully, it only took one more trip of this before the doctor said his legs were good to go.  That was three weeks ago.  The next time back was to get the casts off. 

This brings us to yesterday.  I was extremely nervous about this appointment, because Aaron does not do well with loud noises.  Especially a loud noise that causes him any kind of discomfort.  When they had sawed around his knee to get the first wedge put in place, he was screaming and holding his hands over his ears just turning the machine on.  They showed him how the "saw" won't cut his skin, but will cut the fiber glass.  They put the saw up on their own hands to show him. But like I said, he does not like loud noise.  (Even at our Easter service at church he had his hands covering his ears while the orchestra played.  And he flinched every time the cymbals crashed.)  Poor guy.  Anyways, he was inconsolable as long as that saw was going.  It does feel like a very intense vibration.  I basically had to pin him down and let them do their work.  While I was holding him down, my elbow bumped the top of his cast and I could feel the vibration of the saw through my arm and it is a very funny and intense sensation.  So you can see why I was very anxious about them taking his entire casts off where they were going to have to saw all the way down his legs.  About an hour before his appointment I gave him a dose of his Valium that was leftover from the surgery in hopes that this would help him.  It did.  He was much calmer.  He was still anxious.....whimpering, squirmy, a few yelps, but definitely not out of control.  I did not have to pin him down again. 

After they finished getting the casts off, we went over to the orthopedic department where he was fitted for AFOs.  He picked the American flag print.  That's my boy!! The braces will not be ready for about 4 weeks.  Then we went back to the clinic to get short casts back on.  The doctor does not want him overextending his heel cords in the next four weeks.  But he does want him on his feet, putting weight on his knee joints, and to start trying to walk.  Thus, the reason for recasting the bottom half of his legs.  Aaron chose camouflage print for his short casts.  They gave us casts shoes to help him be steadier on his feet.  Before they recast his legs, I took a picture of his heel cord incision. I think this shows why he was in so much pain after the surgery as he suffered through countless muscle spasms.

Over the rest of yesterday and today, he is back to being in quite a bit of intermittent pain.  His legs are reacclimating to being able to bend again.  He even prayed at lunch today for God to help him with the pain and to be able to learn to walk.  If they are bent or straight for a period of time, it is always painful to get them in the opposite way.  We are learning that it helps if he can relax himself and not anticipate pain and tighten up.  We try to get him to relax and just let his knees bend and straighten on their own depending on the position he is in.  He had slept with his legs bent for the first time in a long time, so when he woke up, it was very painful for him to get them straight when he wanted to get up and play on the floor.  Then when he needs to get put on the potty or in his booster seat at meals, it hurts for them to bend down again.  Each time it seems to get a little bit better, but the key for him is to learn to relax and not get so tense.  We have also had him walk across the kitchen twice today.  He is not bending at the knee much, but that will come.  The important thing at this point is that he continues to put weight on the knee joints.  He is a strong little trooper.  He amazes me all the time.   Here are some pictures of him in his new casts today.