Miracle League and Update

A new season of baseball with the South Metro Miracle League has started. This is his second year playing. He was so into the game last night it was fun to watch! A big accomplishment was that he stayed on his legs the whole game, no retreating to the wheelchair. Last year, he was healing from the bone graft at the start of the season and then the femur fracture near the end. The fracture also impacted the fall ball he played. We are grateful for some equipment he was given through Freecycle. I should have gotten a picture of him batting last night. Sam was wearing the batting gloves, sun glasses and batting helmet, decked out for moment! But he hit the ball right away and I didn't get a chance to.

Life has been up and down for us since a last regular update. In December, he had a serious bout with headaches. For a week it was like before his Chiari decompression surgery, headaches coming on with activity that improved with laying down. The second week it became constant. After the second trip to the ER, he was admitted. Full MRI of spine and skull found possible problems with CSF flow over the site of surgery but more tests need to confirm that. He is doing better now so we are watching and waiting.

His femur fracture of last July is been slow in healing. Last xray was in January and he still had a bit of healing to do before IM nails could come out. We will xray that next in June. I wanted to wait until school was out before doing the surgery anyhow. Sam had PT with his legs until about December than he kind of plateaued. So we decided to take a break and just work on things a home.

His newest development is a right clavicle fracture. Two years ago he hurt his shoulder doing an obstacle course in preschool. Dr Healy thought it a fracture but not much was to be done with it. The last few months I had notice the right collar bone was looking different than the left with a bump towards the middle. End of April, Sam was bouncing a beach ball hard as he could to make it go high as possible. All boy, right! and his shoulder started hurting. Some Tylenol and it was ok, just tender through the week. A week later he stumbled walking into a bedroom and hurt it much further. A trip to ER didn't reveal a fracture at the time, but a bone lesion where there wasn't one before.  They ER docs didn't know what to do about it. Gave Sam a sling and told us to follow up with his Gillette doctors. An xray 11 days later revealed that there was indeed a fracture of the lesion and his body is beginning the healing process. We are going to wait and see how his body heals it.

This development is so discouraging because until this point we had not seen new lesions forming. What he had was fairly stable and healed after fracturing. When we Dr Healy next month, we will do more xrays to check for other lesion growth. We have been in contact with Dr Michael Collins of the NIH to try and define what is going on. Maybe it is time for a nuclear scan?