Stable....yet hurting... Xander is tolerating full strength formula but only at 5ml (1teaspoon) per hour. The intestine still doesnt tolerate much and he remains on the tpn (IV) for his nutrition. Its not ideal but its keeping him stable and home! In other news over the course of the last month or so his hands began to swell and give him a great deal of pain. He has had labs and X-rays done and seen a Rheumatologist. At this time we know it isnt RA thank goodness!! We did learn that he has pronounced osteopenia in the bones in his hands. Essentially the bones are thinning near the joints....why?? The doctors are still trying to find out. There is a chance he is dealing with the first signs of childhood arthritis and we are praying this isnt the case as this will be incredibly hard to treat due to the risk these meds have on the liver, heart and immune system. Over the next few weeks we will continue to run tests and try and help him as best as we can. He isnt sleeping well and cried through part of his therapy yesterday begging for medicine (he wants us to give him Motrin but at this time we cant because hes already on doses of naproxen, neurontin and Tylenol) he was quite agitated with me when I wouldnt give him something for the pain. When he isnt trying to do tedious tasks, that require his little hands to work, hes overall happy. He plays with his sister, has taken a trip to MainEvent and stays inside on these hot summer days. His imagination is amazing and if hes hurting he escapes to reading with me on the couch, watching a movie, or imagining the house is full of dragons. He was able to feel his little brother kick yesterday and no matter how amazing that experience is for me the look on his face made it nothing short of miraculous. Please pray we can solve this mystery and get him relief, pray the intestine will begin to function again, pray we can continue to keep illnesses away and thereby continue to keep him home. Thank you all for always being there and ready to help, encourage, pray, hug....we couldnt do it without you all!!!!!
Posted on: Sat, 26 Jul 2014 14:49:03 +0000