VBS

Our church is having VBS this week and Sam is excited to go each day. Part of the day is Stretch and Grow, a kids exercise program. Yesterday we sat out that portion, but Sam was disappointed to miss out time with his group. today we stayed in the gym and I let him participate but no jumping and slower pace. If that was possible with him! Part way through though his head hurt so we left and sat in the couch room for a few min. The teacher, coach or whatever her title is, even noticed that Sam didn't look good as I took him out. The head ache stopped right away and he has not complained since of anything. I guess that was the "no streneous" part of his restrictions. Tomorrow I'll be in the nursery so I'll have his group leader drop him off on the way to the gym.

Went to Playworks yesterday....

Playworks is a huge indoor playground the kids love to go to. After playing for a while I could see Sam was slowing down, sitting a lot and looking very tired and run down. But he didn't want to give up and sit with me. he always wants to be where the action is! I offered him some Tylenol and he took it no fuss at all. He must have been in pain because he usually refuses medication. Not long after he was looking a little better and continued on playing. He even managed to walk all the way back to the car! I was a nervous wreck jumping up each time I heard a peep from him, saw him sitting, or didn't see him for a bit. At one point he bumped his arm and was holding it. It turned out ok, but at that point in my mind I made plans on where to seek treatment and such if something should happen. Will I ever be able to just play again?

Four headaches since surgery....

I am a little bummed. I took the kids to the park tonight and Sam did his usual hang over the swing thing. After a few minutes he came to me and said that he was tired. I asked if his head hurt and he said yes. Then he staggered off to the play structure. After sitting on the slide for 5 minutes or so he felt better. I am just disappointed that it was such an obvious cause. The others were the first day after we came home from the hospital (5/23), the really hot day we had the follow up at Gillette (6/9) and Wednesday (6/15) when we got to bed so late.

Ortho check up.....

Sam continues to do wonderfully far as the chiari surgery goes. It continues to be a struggle to keep his feet on the ground and no strenous activities. But he found a way to do so this weekend at the Family Social event picnic as you can see in the picture. I am also posting a picture of his scar. All the stiches have fallen off. there are a few scabby looking things but overall looking good.

Today we saw Dr. Healy to check up on his legs. The x-ray showed his left leg healing well. Bone is being remodeled and the hardware can come out anytime. This will be planned for later in the summer. Dr wants to give him the summer to play and swim and continue to stregthen his legs on his own. Ssurgery would prohibit swimming for about 3 weeks. We will wait on therapy until after surgery since the surgery will involve moving muscles. There will be nail holes in his R femur so while he can weight bear, there will be no running and jumping for about 8 weeks afterwards. Dr Healy also wants to make sure the nuerosurgon has no restrictions on surgery. I asked about the back and x-rays will be taken day of surgery to make check on things there.

Dr. Healy also brought up balance in living with a disease. While Sam will likely never be a good canidate for football or hockey, we can't put him in a bubble to protect him from all risk. Each family is different in what they are comfortable with allowing thier children to do. Sam is pretty hard to keep down. I guess I need to accept the fact that there will be other fractures. I pray it is not his back. School is another area to deal with. i think they are *very* scared about fracture risk. They didn't even blink when I asked for special ed bussing to protect against shoving and slipping. I think our struggle will be how much to allow him to do. Espically come first grade and PE class. I am curious to see what he will be like without the hardware and on the pamidronate. He is having a lot of pain now, though he does not say so. I thought of another question to do with surgery on the way home but now I forgot it.

Love this Little Guy......

Is it possible to love him any more? Today after he got home from school, he excitedly looked through the little bag of gifts his teachers gave him. One of the gifts was bubbles we enjoyed. Another one was a Clifford book that each of the teachers, aids, speech and OT had signed. I read all the comments to him and he started crying. We just sat and snuggled for a few minutes. He never told me anything, but I did tell him that saying goodbye can be hard. He has had such a fantastic year a the Early Childhood Learning Center and really fell in love with his teacher Miss Kim. I have so appreciated some place to send him where I was not concerned about his safety and well being and he was greeted with such enthusiasm each day. On to new chapters of life!

Rambelings.....

Ok this week has been busy and not as remembering as I thought it would be. First of all Sam had a wound check with the nuerosurgery nurse practioner on Monday and that went well. They say Sam is looking fantastic. His scar is healing well. We can use silicon bandages or maderna to helpprevent keloids from forming, also lots of sun screen. The puffy face, weight gain and frequent unrination should resolve itself as his body gets used to not having the decadron. Unfortunately he stil needs to keep his feet on the ground and no strenous activity until we see the doctor on July 5.

A year ago....Monday June 7, the doctors talked and decided to operate and put in a plate to fix the fracture and take a biopsy. The afternoon of June 9th was when they could do it. I remember the day before, we took a walk outside around the hospital. At one point I stopped and asked him if he wanted to keep walking or turn around and go back to the hospital. Sam's answer was walk home! I took him to a dog show that night, but he fell asleep during the show. Then he woke up and was awake so late. he was miserable the next day waiting for surgery because he could not eat. Finally fell asleep just before surgery.

Back to this year. Tomorrow marks an end of a stage in our family's life. Sam will finish preschool. We will be done with the Early Childhood Learning Center. Next will be Kindergarten.

It's been a year....

A year ago I was making dinner and Sam had found a cookie left over from after school snacks and was eating it while pacing in circles in the living room. There were pillows and cushions on the floor from a movie we were watching earlier and Sam tripped on one. I'll never for get his scream. Once in a while he screams kind of like that in play, just the start of it and it is just enough to give me that moment of panic before I realize it is only play. His right femur broke when he tripped. I could see a lump just below his hip and didn't think I could put him in the car, espically a car seat, and transport him to the hospital with any measure of comfort or safety so i called for an ambulance. It turns out that lump was the little bit of bone being pulled out to the side by the butt muscles. The ambulance driver recomended going to Regions since Sam was already a Gillette patient. Saved us a transfer. Sam was kept comfotable through the night and his leg was put in place (closed reduction) a spica cast was put on under general anesthia the next morning. It was his first surgery. the doctor could not get the bone to meet end to end. it was overlapping a little bit. That was a Saturday morning and he was kept comfortable over the weekend and I was showed how to care for him in a spica cast. Monday, the on call doctor meet with Dr. Healy who had seen Sam in March and they also called Dr Clohisy, bone tumor specialist at the U of MN and it was decided to operate and put a plate on his femur. they however were not sure exactly how to do it. Plates are not made for 4 year old bones. He also has another lesion further down on the femur that was slightly misshapen his bone. Medicene is as much art as it is science.

Well yesterday instead of going to the hospital in the evening, we grilled out and played in the hose. Earlier in the day we took a picnic lunch and went park hopping. At Charlies park, there were many army worms and he was fascinated with them as the picture shows.

We spent a week in the hospital. I'm sure there will be more posts about the week as I relive it over the week.

2 weeks Post Op

I have uploaded two pictures this week. the first one is with his hair moved out of the way to see the scar better and the other is with his hair down. There is not a whole lot to report this week. I broght him back to school last Friday and he was tired by the end of the day. Though I think some of it was that he realized how much he missed school while he was in the hospital and was telling me about it while he was in the car on the way home. Tuesday I drove him to school and Wednesday he finally got up on time so I sent him on the bus again. He has been enjoying school alot this week. He finished his decadron on Wednesday. Please pray the chemical menegitis does not come back as the drug leaves his system. We go for a post op follow up with the nuerosurgeon's nurse practicioner.