Luke gets a big OK from the surgeon

Luke's appointment today was totally positive. The neurosurgeon told him he could go back to doing whatever he wanted. He has been riding his bicycle but now he can do other things like run, play soccer and baseball, and jump on his brothers! You may find mom and dad still overly cautious but any parent would do the same.

What wonderful news from Hershey! Following his appointment, Luke was treated with a day at Hershey Park riding, laughing, and probably doing the other thing he loves...eating! I hope he understands it was all worth it!

Luke won his first battle! There will be future battles for him but I feel he's equipped to beat anything that's thrown at him. What will his MRI show in Jan? Will his scoliosis get worse?! These are unanswered questions but for now there is plenty to celebrate! Good Luck Luke!

Luke continues healing during weeks 3 and 4

Luke has really been doing well the last 2 weeks. His incision is healing well and he is done taking the steroid medication that was controlling his brain swelling. He is slowing working his way back to normal. There are some days where he has headaches and yesterday was a day where he vomited at least 10 times throughout the day. This was obviously worrisome because he couldn't eat anything the entire day without throwing it all up and we thought this was another set back. However, he bounced back the next day with none of those symptoms.

Luke is a truly remarkable kid how he takes these things and shrugs it off. A 5 year old that can manage his way to the toilet, vomit for 5 minutes, wipe himself off and walk back to finish watching his cartoons like nothing ever happenened.

As he heals, we've noticed a change in his behavior and patience. He will spend hours now using his mind rather than his body by building lego models reading directions and building objects completely by himself. I witnessed him spend 2.5 hours non-stop building a 450-piece Lego Star Wars X-wing fighter. The first 60 min was entirely Luke reading the visual instructions, finding the correct piece out of 400+ pieces and placing it in exactly the right spot. His favorite helper is our neighbor Julie Mills.

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.