Stressed

Yesterday we visited the GI doc that gave us more insight into what Camden may have. He urged us to get in to see the Geneticist as soon as possible. Sometimes I feel that I may know too much and start researching with lack of information to be worried about. He mentioned a "storage" disease. For example, he thinks that Camden is processing something such as glucose properly but when it is stored in the form of glycogen in the organs, he cannot turn it back into glucose causing the organs to become enlarged. Camden has no idea anything is amiss. He thought that the Dr was just tickeling his tummy. We repeated some bloodwork to see it has changed since he was in the hospital. I talked to the PA today and said he was going to call to see when the geneticist will be able to work us in. He thinks it will be a couple of months unfortunately. They did suggest getting a liver biopsy at Duke's metabolic center to see exactly what the enzyme missing is. On a lighter note, we were lucky to get into see the sleep doc about his sleepwalking and night terrors on Thursday. I am worried about his poor appetite. They suggested to supplement with pediasure but know he will not drink it. The thing that bothers me the most is the effect this will have on his life. I can't bear the thought of him struggling with other kids asking why he is so short or his belly is big. He is the sweetest little boy. Yes, he does does have his moments of drama and meaness, but who doesn't. I am hoping that this is all a fluke and can be treated really easily. Some treatments include diet restrictions, tube feedings to ensure blood sugar maintenance, and worst case organ transplant. We will wait anxiously and pray fervently for his healing.