Week 2 : Recovery still going relatively well despite setbacks

Luke's recovery seems to be like his disorders, no symptoms but problems still exist. He really responds well to the steroids, when he is on them. Unfortunately, every time we reduce his steroids he has episodes with his head hurting like "somebody is sticking a knife in it". This is what happened last week when we had to take him back to Hershey. It appears he gets swelling in his brain when not taking the steroid. Yesterday was to be his last dosage however we had to put him back on it last night and we continue to have him take steroids today. He's not vomiting anymore however, due to the steroids, he has gained his weight back and then some. He's probably 6 or 8 lbs over his pre-surgery weight...maybe more. He eats like a horse. I'm told this will go away once he's off steroids but it could take several weeks or months. So, Luke Skywalker is not out of the preverbial galaxy yet.

I tend to think this is how it's going to be for quite some time...maybe months. I really hope he does not have to take these steroids for a long time. There are obviously ugly side effects, one of which is a reduced immune system, and we are getting very close to cold season. I pray he does not end up having continuous headaches either. This is another worry of mine, albeit unfounded at this point.

His spirits are definitely up. Today our neighbor, Julie, and I helped Luke build a 400+ piece lego X-Fighter toy. It took 2.5 hours and he shows us there is no limit on his critical analysis and thinking skills. He spent at least 45 min of focused time reading directions and putting each piece of his model together, even questioning the work done by Julie and I. He is showing us he loves to build things. We also notice his motor skills are intact as he puts the tiniest pieces in his model fighter plane. He really loves to build things and that's a joy to see.

We continue to receive great support and well wishes from everyone and it greatly helps us to deal with these continuing problems.