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May 23rd 2003 |
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Spencer just came home from the Shriner's Hospital where he had an arthrogram on both his knees. X-rays were not showing doctors anything that was going on in his knees. The knees have a sack of fluid around them. Doctors injected a dye into the fluid and then looked at them with a special scope. That allowed them to see how the ends of the femur and tibia were forming. Spencer was put under general anestectic for this procedure.
The best case scenario would have been that the bones were forming normally and just needed to be aligned. That was not the case however. Dr. Mosley and Dr. Hugh Watts performed the arthrogram. Afterwords they informed us that Spencer has "very interesting knees" Here is a breakdown of what they found.
The bottom of the Femur normally has two knobs on it. The top of the Tibia is normally flat and then slots into the Femur. The bottom of Spencer's Femur is just flat without the knobs. The top of his Tibia is rounded. This allows his knees to bend all around almost like universal joints or ball joints. They were also unable to locate a patella (kneecap) in either leg. They didn't seem too concerned about the absence of the kneecap.
They also found that when Spencer's heel was folded back to touch his butt (like a kneeling position) that the foot was positioned correctly. However, when the legs was extended, the lower legs slowly rotated in about 80 degrees. (having his toes point in and be quite bowlegged) His legs have never extended to be completely straight.
They believe that although Spencer's knees will never work the way other people's do, they could align them to a position where they would allow him to walk. They are not sure exactly how much motion he would have. They do say that his knee joints will stiffen with time, even if we do nothing. They just believe that if they can put them in a better position before they begin to stiffen, he will be able to walk.
We scheduled his first major surgery for September 4th, 2003. They want to start with his left leg which is more severe. Here is their current Plan:
- Release the soft tissue (Ligaments, Tendons, etc) which are preventing the leg from being aligned or fully extended.
- Perhaps shortening the Femur by about a centimeter (taken off the bottom.) Dr. Mosley says that although this sounds extreme, it is something they do a lot. Basically, Spencer's bones are too long for his Ligaments & Tendons -- Or the Tendons & Ligamnets are too short for the bones. Either way, the end effect is a knee that won't extend.
- After releasing some of the soft tissue and shortening the bone, they will immobilize the leg so it can heal. Originally they taked about a cast for 2-3 monthes then bracing. Now they are looking at one of those exterior "Halo" type rigs that surrounds the legs and has attachments that go in and connect directly to the bone. Either way, a bracing system would be used after the initial healing until the ligaments and tendons could gain strength in their new positions.
- After they evaluate how the surgery goes (about a year of observation) they will then look at proceding on to the right leg.
That is all we know for now. We will be in contact with the Shriner's as we prepare for this. Both Jenn and I work so we are going to try to come up with some way to have Spence taken care of for a 2-4 weeks after the surgery. We also just applied for a handicapped placard for the car. Starting the reseach into wheelchairs and assistive devices since Spencer's new leg position will end his days of "Scooting" at least teporarily.
We are still trying to get assistance from CCS (California Children Services) but are lost in a glut of paperwork. Shriner's said they would take over harrassing CCS to get us accepted. That service would pay for many of the assistive devices.
Also still dancing with SSI (Social Security) But they move even slower that CCS. Even though Shriner's covers all the surgical procedures (god bless them) there are many new costs to consider as we move into wheelchair-land and Spencer gets heavier (already 30 lbs)
Looking into vans with wheelchair lifts and even some programs that assist with powered wheelchairs.
And how is Spencer's spirit? Glowing as always. He got to the point that when the nurses came to take his blood, he would say "over" when they were done and then say "thank you" as they left. Less than 4 hours after the arthrogram, we had to ask him to calm down because he was bouncing up and down so hard, the whole hospital bed was moving around the room. He didn't seem to care and was more interested in singing along with Elmo.
His platelet count going into the procedure was 53,000 - During the procedure it dropped to 35,000 - 4 hours after the procedure, it was back up to 51,000 |
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