Next, Last?, Surgery Scheduled

I have set up Sam's next surgery for August 18. He will have the plate on R femur removed and the flexible titanium nails inside his L femur removed. We have planned an overnight stay for pain control. the surgery starts at noon, we report at 10:30. We will have x-rays taken just before that so a little earlier than 10:30. I want to check on his back. he complains occasionally of back pain. If he was a typlical kid I wouldn't worry about it. However I know that there is FD in several vertabrate and the spondylothesis between L5 and S1. I just want a baseline of where he is. His limp is also variable, sometimes almost unoticable, this past sunday i saw him dragging his R foot. The morning of his surgery will be a challenge to keep him away from food and drink. I think I'll try to find a pool for an early swim. I also want to plan a family trip to a water park before the surgery since he will not be able to swim for a few weeks after surgery until the surgical scar completly heals.

I found an x-ray on line that shows why we need to get the hardware out now: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2656851/
I am having trouble getting the link to work to just the pictures. If you go to the article then scroll to the end, you will see two x-rays showing hardware with bone grown over it.

Note to my self....

Just a quick post so I remember....Sam complained of a head ache as I put him to bed on Thrdsday, July 14. He woke up ealy the next morning crying because is leg hurt. I helped him move and recover himself and he went back to sleep. He didn't remember anything about it when hegot up for the day later on. Over all his endurance seems to be geting better and he doesn't have the general drained, weakness he had before surgery. We are off to swim this afternoon on this hot huid day!

6 week follow up

Basicaly Sam is doing great. We went to see the nuerosurgeon today for a follow up. Sam can finally get his feet off the ground. A couple of weeks ago I saw some buldging by his scar, it only lasted a caouple of days and he did not seem bothered by it. Dr said it was likely a small leak that was reasorbed. He said that the "dust hasn't settled yet," and this, along with headaches, could happen for 6 months. One thing new doctor said is that he was thinking that the chiari wasn't that bad and he wouldn't need to open the dura before surgery, but during the surgery it was worse than he thought so that is why he opened the dura and put in a patch. Sam has no restrictions and general anesthia will be even safer than it was before. Sam will not need an MRI as a follow up unless there are symptoms. it's not worth the sedation and all. We go back to see the doctor in 6 to 12 months. 6 months if there are problems and more 12 months if there are none.I also asked about checking other kids since many other parents I meet on the internet seem to be told to have thier other kids checked. Our doctor said that there is only a 5 percent increased chance of a first order relative also having it. In all if there are no symptoms, don't look.

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.