Nathan's Progress

As most of you know, our second son has Cerebral Palsy.  He's done really well, running, jumping... even playing soccer.  But, he was walking on his toes, with his knees turned in and it was causing damage to his hips. We knew he was going to need some surgeries, but we wanted him to be able to see doctors who knew him...   Thankfully, we were able to take our STAS in the same city where Nathan was diagnosed with CP and where we have some great relationships with great doctors who have followed Nathan since birth.  Since the medical in Spain isn't the greatest, we had line up all Nathan's appointments long before we even arrived in the States.

His initial appointment with the Dr. who had diagnosed him with CP went extremely well.  When we left NC for Spain, this dr. had warned us of the possibility that Nathan could end up in a wheel chair if we were not careful to keep him in therapy, etc.  This time, he said he didn't see a wheelchair in his future at all.  Nathan had gained a lot of strength, I think, from all the walking we have to do while living the European life-style.  We were very excited about this report!

The one thing he mentioned was doing Botox to help stretch Nathan's hips, hamstrings, and heel cords... or going straight to surgery, depending on how invasive we wanted to be.  We were also concerned that Nathan might have sleep apnea, so we talked with an ENT about getting his tonsils and adenoids out.  They told us they could do both surgeries together... the Botox and the tonsillectomy.  THAT was a really amazing thing!... since both Dr's were out of UNC hospital, they coordinated their times and we decided to have it all done together.  After meeting with the Pediatric Orthopedic, he felt like we should start with Botox instead of doing the very invasive surgery.  So... that was the plan. 

Since we were kinda on a short time-frame, we tried to get it all scheduled as quickly as possible.  We had to wait for clearance from our insurance, and in the mean-time, we went on our trip to FL and Disney! :)  We ended up getting clearance and having to cut our trip a little short, but we got Nathan scheduled for surgery.

We were in a little bit of a hurry, because Botox takes 4 weeks to go into effect; then we needed to cast him for 3 weeks and then watch him for several weeks after that to see if the Botox was successful.  If it wasn't, then we needed to do the surgery, which was an 8 week wheel-chair recovery with intense therapy afterward.  We needed to do the Botox as early as possible in case it didn't work and we needed to do the other surgery... our return date of Feb. 6th was looming closer and closer!

The surgery itself went fine, but the recovery ended up being more complicated than we expected... it was much worse than the average kid.  I'm not sure why things are always harder for Nathan than for others, but the poor kid fought through so much.  He ended up getting strep throat during his recovery, which definitely slowed down his progress... but eventually he made it! :)

Waiting to get those casts on!

And, of course, he chose Carolina blue. :)

Right after his 10 day recovery, we left for a week's training in Richmond and then on for our family vacation in NY.  Once we got back, the Botox had taken affect and they put casts on both legs to help stretch those heel cords. We initially thought he'd have to have casts up to his hips in order to stretch his hamstrings, too; but in the end, the dr. felt like the heel cords were enough.

He did really well dealing with those casts for 3 weeks... it took him a little while to get going, but he learned to get around on them pretty well. 

When he got them off, everything looked great!  The Dr. was pleased, as was our physical therapist; so the decision was made NOT to go on and do the surgery, thank the Lord.  Nathan got braces for his legs the same day he got the casts off, so he was set!

The one thing we didn't expect was how hard it would be for Nathan to walk in a position that he has never used before.  At first, he couldn't walk at all.  He could definitely stand on flat feet, but when it came to moving, he was very unsteady and very scared, actually.  Nothing felt normal, and it actually hurt.  He spent the first week or so crawling when he wanted to get around.  Walking on flat feet uses muscles that he's never used before, so they are very weak, and not used to being exercised!

As you can imagine, it was pretty difficult for all of us.  I never thought to ask about the details of this recovery because it seemed so much simpler than the invasive surgery with an 8 week wheel-chair recovery.  Therefore, I never prepared Nathan for it.  Poor thing.  I think it took us all by surprise.  I had to pull our therapist aside and (tearfully) ask her if he would run again.  Nathan was so sad... depressed, really... that he couldn't be outside running with his brothers.  He was USED to doing that.  Sure, he was a little bit slower; but before Botox, he could still run and pretty much keep up.  There were days that he would cry and tell me that he just wanted to go back to walking on
his toes.

So, it's been a long road.  Nathan has gone up and down.  There are times where he struggles with being depressed and feeling defeated, which I think is pretty normal, considering his circumstances.  But he keeps getting back up... he finds one thing to grab on to, and he musters the will to keep pushing through.  Over Christmas, he was back to crawling again.  We were traveling and he wasn't in therapy, so that may have had some to do with it.  But my parents have a treadmill, so we got him out there.  I told him he needed to do 5 minutes walking straight and tall, with flat feet, on that treadmill.  It was amazing to see the transformation in him.  It was like he realized all over again that he CAN walk.  He decided he didn't want to do 5 minutes.  He wanted to do 30 minutes!... and that's exactly what he did!.. and again every day we were there.  Sometimes his confidence just needs a boost.

I share all this, asking you to keep praying for Nathan.  He's done well, all in all.  He's walking with his braces on his legs, and as long as he does his stretches everyday, he gets around pretty well. We still have a long way to go, but we are getting there.  The kid has amazing tenacity... and a faith in the Lord that would rival most adults.  So thankful for this sweet boy.