Caed has been suffering with leg pains (primarily) the past 2-3 weeks. Todd and I came to the conclusion that it was probably just "growing pains." We have heard stories before from other boys in particular that had similar struggles around this age.
However....because of Caed's condition, we just can't always assume the "norm." NE informed us after this last month's lab draws that "he is on the dry side." (dehydration) Not enough that the drs. feel he needs extra IV fluids right now, but we just need to watch him. Now....after several nights waking up crying in pain, we thought maybe it could just be leg cramps (from dehydration).
NE feels it could be simple "growing pains" too, but would rather error on the side of caution. They are worried about his hydration and also his potassium level. They want Caed to have a DEXA scan (bone scan) because Short Gut patients tend to "steal" calcium from their bones to supplement their blood levels.
So.....it could be something.....or it could be nothing (growing pains). The last several nights have just been hard watching him cry in pain. (seems to be getting worse each night) It will never be the same for us. Our minds always "go there" and the memories of many months of him in severe pain are still haunting. Watching your child suffer is one of the hardest things a parent could ever go through (as SO many of you know). We're just praying nothing more serious is wrong. I guess this is simply another reminder for us that Caed's condition is a chronic one.........it will last a lifetime. Sure, we pray that just as he is doing now, he can live as "normally" as possible, and yet recognize we will always be dealing with the SBS.
Sweet memories