Damon lost 12% of his body weight in less than 4 months. He was already in the lowest percentile of the growth chart, so that loss jerked him way below the chart percentages into no mans land. While Jace was adhering to a reduced calorie plan, Damon had full free range. In fact he was encouraged to eat high calorie foods. For a month, he only lost 1 pound, while eating tons of bread with jam, pancakes, cheeseburgers, tacos, pizza, soda, whole fat milk with extra boosters... all sorts of stuff that would have made me balloon out! I was stunned he still lost a pound. Then he after getting sick, he went into another month of hardly eating anything. I'd put food in front of him multiple times a day, and he'd take it, but ignore it. His lethargy was in full swing and we even had his lungs checked several times to make sure he hadn't aspirated without us knowing. Nothing showed. So we asked to see a surgeon, if nothing else, to prepare for when a Gtube had to be placed. But when he was weighed, he was already diagnosed with "severe failure to thrive" and the surgery was scheduled. He was sick again, so it had to be pushed out another month. I swear, he barely made it in time. He was so weak, so lethargic, and I was confident he was probably not only in starvation mode, but also dehydration. We were so worried.
In the meantime, he was in so much pain, in specific places, but also what he stated as, "all over." Severe pain. By surgery day, he had to be carried in to the hospital. I mentioned all of his specific pains, but had already asked for help with his migraine pains, as well as his overall pain. After his surgery, though, I reminded them I wanted help with his severe pain in a knee that had mysteriously shown up. It was such severe pain to use, but not to touch. He still had what appeared to be full range of motion. It was swollen. At times, red and hot to the touch. No scraps, bruises, etc. Though at first response from Damon to my questioning, he claimed Jace had hit him... I asked with his hand, an object, etc. Then he said nothing. And Jace calmly replied that he hadn't hit Damon. I believed them both at that point, because frankly, Jace wasn't even anywhere near him at any point close to his expressing the pain. I think Damon is just so used to pain like that being caused by Jace, that it's what he blurted out without thinking. Anyway, after so many examinations and consults I didn't count, and a worthless MRI, the verdict by the orthopedic surgeon who felt the MRI was going to be worthless, said I was probably right in my thought it might be the beginning stages of JRA. I was diagnosed when I was 8. Damon is 7. Later, when home and things settled, I did research, and sure enough, all his symptoms match the early stages of JRA. So, we'll keep an eye on it, and record any changes.
His recovery was not happening as fast as we hoped, and we really were concerned it had been let go too long by the drs, like Aidan's, producing permanent damage. We invested in some items to help him with the physical activities that were difficult and prayed for improvement. Slowly, he regained some strength. And gained some weight. He's still really struggling with seizures, pain, lethargy, and lack of independence, but it's still improved from 2 weeks ago. We'll take any, however small.
His recovery was not happening as fast as we hoped, and we really were concerned it had been let go too long by the drs, like Aidan's, producing permanent damage. We invested in some items to help him with the physical activities that were difficult and prayed for improvement. Slowly, he regained some strength. And gained some weight. He's still really struggling with seizures, pain, lethargy, and lack of independence, but it's still improved from 2 weeks ago. We'll take any, however small.
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