Time to update you on some things that have been going on here that we have been processing and dealing with since Wednesday... On Christmas Eve morning, when we got back from getting his port flushed at HealthPark, I noticed Mikeys walking was awful. I was watching it closely and his knees were a mess, they were more buckled than usual and he seemed to have a harder time holding himself up. The left leg was worse than the right but thats nothing new and has been like that for some time now. Christmas Eve day, around 5pm he went to walk from the couch to the computer. He made about 2 steps and his left leg just seemed to give out from under him. From then on, he could take a step, maybe 2 but no more. His legs just couldnt hold him up. I spoke to Dr. MacArthur that evening and he said keep him off his legs as much as possible and hold off until today to see him, it made no sense to bring him to the ER on Christmas Eve and spend the night there when we could just keep him off his legs at home. So, we stayed home and moved him from the bed to the couch by either carrying him (no small feat carrying an 82lb, 4ft 3in tall child when youre only 5ft 3 1/2in yourself) or by sitting him in the wheeling computer chair. Christmas day was, for the most part, great for him, and I cant be any happier about that than I am. I am so so glad he, and Katie & Timmy, had such a great day! He was in a wonderful mood during the hours that he was awake (yes, he slept a lot) but he couldnt walk more than a step or two... no matter how many times he wanted to and tried to. Every time he stepped down he complained his legs hurt and now, knowing what we do, we figure that hes been experiencing pins and needles and neuropathy-type pain. We went to see Dr. MacArthur Friday morning. Macs cinical exam showed decent range of motion in both legs but hypersensitive reflexes in both as well. He said that we dont even need X-rays, the clinical exam was indicative of lesions in the cord, cord compression and nerve damage. Mac also said that the right side is as bad as the left but left has been so much weaker to begin with so it gave out first. This all means that Mikey is losing the ability to walk. Really, essentially, its gone, since he can hardly weight bare or walk more than a couple of steps. Being the tough nut and strong willed little boy that he is, he keeps trying but his legs just cant hold him up anymore. The tumor is doing more damage to his cord and nerves much sooner than we had thought it would. I HATE that. I HATE that we cant control it or fix it. The nerve damage has been coming for so long but just because its been in the backs of our heads that it would come to this one day, doesnt mean its any easier to deal with now that its here. Please send thoughts and prayers for Matt and the bookends and me as we navigate this latest hurdle... please send thoughts and prayers for calming for Mikey... the frustration is here and we are trying to deal with it but its so hard when he is so frustrated and we are processing all of these downhill changes that just keep coming... Please send thoughts and prayers that we are still able to help keep the pain and discomfort away. Ill update more as we know anything... for now, were enjoying every minute that we can...
Posted on: Sun, 28 Dec 2014 14:00:52 +0000
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