Little guy healed well from the fracture and life slowly got back to a regular routine. I took him to summer school by car. In August we toilet trained. It took three week but as school started he seemed to get it. He started a 5 day a week small group special education preschool program. In Sept we saw Dr. Healy again. He took another standing x-ray. Some of the lesions seemed to improve. I asked if the limp could be cause d by the chiari. Dr didn't know so we were sent to a neurosurgeon.
We met the nuerosurgeon at the end of September. It turns out the chiari is really crowding his foramen magmen and blocking flow of spinal fluid. It will need surgery at some point. At this time the headaches had gotten a little bit better, mabey it was the indocin he was taking daily. Indocin is related to ibuprofen.
In October we had the followup with the geneticist. That morning Little Guy awoke with neck pain and would not turn his head. Blood work came back OK there was no fragile x and no major genetic things going on. We did not need to see this Dr again, but since he was being treated for an inflammatory disease (CRMO) we got a referral to a rhumatologist. We also saw Dr Healy as Sam was not moving his neck and wanted to make sure it was not a lesion in his cervical spine or something. X-rays looked OK and we left assuming it was pulled muscle. That was Monday.
Wednesday afternoon, Oct 20. Sam and daddy were playing and Sam ran down the stairs and missed the last two steps. He broke his left femur. This break was further down the bone and not as deforming so I called Gillette and we took him in by car. He was made comfortable for the night and Thursday morning he was taken into surgery by Dr Healy for an open reduction internal fixation and flexible titanium pins were put inside his broken femur. Two pins are put in just above the knee and they cross at the point of the fracture. A cut was made at the fracture site to help them cross so another biopsy was taken. He did much better after this surgery and we were able to go home Friday with just a knee immobilizer.
Things seemed to be going well. We got busing set up so he could ride the wheel chair to school. Day before Halloween we went to the Rosemount Haunted Trail for the kids and he had a good time. Sunday coming in the house after church, I was trying to let him down the stairs in his wheel chair and it slipped. Tipping over and re breaking Sam's leg. Back to the hospital, it was indeed broken and we needed to replace the hardware. Surgery was set up for late Monday afternoon. This time they were able to pull out the now bent hardware and put in new ones with out having to make the extra cut above the fracture. Sam tolerated this well and we got to go home on Tuesday. Though because he rebroke it a half spica cast was put on. This started at his hips and went down the broken leg to the toe. We had to have a special car seat vest for Sam because he could not sit with the cast.
The month of November was spent in the cast. I had to drive him to school because he could not sit. School was fantastic! I was so grateful for a teacher that was so excited to see him and give him things to do and me a break every day.
In Nov we saw the rhumatologist. This was another appointment that was pivotal and upsetting. She did not think he has CRMO. There were several reasons and the biopsy had been sent to Mayo and came back *PROBABLE* fibrous dysplasia. I was so upset by the time we got back home. I thought we were on a good course and now it was tossed out.
Dec 1st the cast came off. Xrays showed the leg healed enough he could begin to walk on it. Dr Healy and I talked at length and neither of us were happy about the recent biopsy and what should we do now. that biopsy was taken as a reassurance. Dr. Healy submitted it to Regions lab. they sent it on to Mayo lab. the first was sent right over to U of MN lab. We did stop the indocin and would see what happened to his blood work off of that. Little Guy was given PT and a walker and we went on our way. He was so excited to have the walker that night he would just walk back and forth from the kitchen to the living room!
December brought us a big snow storm with some 18 inches falling in one day. the hardware started slipping out of Sam's leg. There was a big bruise where it went in and I could see the skin budging. I took Sam in on Monday and x-rays did show one pin had slipped. We had been told to go NPO that morning but Sam found a nilla wafer while I went to get the car so out patient surgery was set up for the next morning. The nail was trimmed and advanced back into his femur and a biopsy was taken on the right leg, on a lesion not undergoing active fracture repair. that went well and we left the same day. The biopsy was sent to both labs the U of MN of the first biopsy taken in June and Mayo Clinic labs of the one taken in Oct.
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