Google ......and ........

Tonight I sit here awake while Daddy and all 3 kiddos and 2 dogs rest comfortably as I usually do and this could go on for hours. It seems I have an addiction where I would love to admit to playing on facebook and mindless facebook games my addiction is far worse. I sit and google words with an included "and" in between waiting for that magical diagnosis that will fix him. I know its crazy and some of you reading are probably judging me and asking yourself when will I just accept him. All I can say to those in my similar shoes is it's not the delays or behaviors but the health I would like to fix. Those of you with healthy children will never understand the anguish as I sit here hours on end typing in the 1,000 of possibilities of those 16 diagnosis's. Its crazy really I don't even know what to do with the information and similar children I find. I feel like I want to study the special children like they are a science project and group them and see what medical issue is from what. Why can't he swallow, why are his liver enzymes so high, why does he have 100s of seizures. Luke has started waking screaming at night again and just when sleep was going so well for the last weeks. It seems an endless cycle. But what brings me to the computer day after day is no longer the seizures for those I have accepted as something that I will not figure out alone and in time doctors will have a better understanding of why. Maybe not today maybe not tomorrow but in time and hopefully in his time. But for now I accept I can not fix them. But this stomach thing has made me sick with worry. Its not like the unsteady gait he waddles around with , a gait that he has come to overcompensate for. It is instead a scientific test a biopsy actually showing that his small intestine is not healing despite what we have been told to do. He was diagnosed with Celiacs and after multiple biopsies and an expensive genetic test it has been confirmed. However after almost a year of eating gluten free foods there is no healing. So in an attempt to try sometime we have been instructed to remove all milk and milk protein. It seems now that his foods are even fewer and Mustard Seed must be the richest empire in the world. The fact that they can get 2.39$ for a disgusting single size serving of completely gross yogurt that contains no milk or gluten, or 7$ for a small bag of pretzels is completely absurd to me. But we started giving him Vegan cheese (imitation mozzarella) and he does not particularly like it. When I spoke with the nutritionist about having to change all of his like cheese, yogurt, milk etc she even mentioned the possibly of removing all of his foods by mouth and doing a very sensitive predigested formula through the tube. To me taking away the joy of eating seems so cruel and exactly what we didn't want to happen. It took him nearly 2 1/2 years to learn to actually chew his food. While most moms marvel at a child learning to walk I marvels at his "good lateral chewing." But then I hear him say if they can't heal the stomach it can lead to far greater problems for him. If it isn't already a great problem. Their are conditions that present like celiacs that aren't like the T cell lymphoma that keeps popping up in the Google search or perhaps its the other 5 nasty conditions that come to the screen. I already think the doctors think I am insane so how do I ask the questions I fear. The biggest one that for everyone seems crazy but for me seems like such a reality is the D word. I keep thinking what if this is just his stomach failing in a way that can't be fixed. What if they can't help him and this is it. It's maddening to think about it but I can't keep my mind from going there. Until someone can tell me why he can't be healed and have a healthy tummy and perfect blood values than I will continue to Google and worry. Lately I keep thinking about starting over completely taking him to a whole new doctor and giving them no history and having them look him over from head to toe , inside and out to see what they come up with. I don't know why I continue to doubt the doctors I respect and like but I am so sick of them saying things like, "This is Luke anythings possible" or "I've never seen anyone quite like Luke" or "We never come up with any answers but clearly we have a problem" Its maddening, frustrating, painful, depressing and makes me doubt my faith in everything! So with all of that I will go back to my Google search because I have just thought of 2 more combinations I have not done yet! I'll keep you posted on what I find!