The doctors are still trying to figure out what is going on. We now have our medical team, the gastro team, the genetics team and now the neurology team all working on his case. So that means lots more labs and tests to see if they can start to figure something out. They have known all along that he definitely has some nutrition issues so they are giving him pediasure through his feeding tube at night and during the day we get him to drink his milk with a nutrition supplement in it and also try and get him to eat foods (which he puts in his mouth, chews and spits out, part of his swallowing issues). They are also giving him a multivitamin and iron supplement as well. However, with the gastro doc's influence they have come to realize that nutrition alone is not the underlying problem. No one knows what is causing the Lethargy and extreme weight loss. They have run so many tests and ruled lots of things out. So far some of the big ones have been, brain MRI- clear!, EEG-normal EKG-normal, blood counts normal. Today they are going to do another panel of blood tests that all the doctors have ordered. Only problem is tucker is a "hard stick" meaning they have a hard time locating a vein to get blood. So his arms are all bruised up from all the try's. today the doctor is trying to get a special team who specialize mainly in iv's but use an ultrasound machine to locate veins. They had to do another IV for tucker and drew blood really easily. Anyways, they usually don't just come for blood draw but dr is trying to pull strings to get them to come and get all the blood they need with one stick, which would be great!! Please pray we can get them in today!
So basically he is a big question mark. Luckily, they have ruled out some of the "big scary things". Please continue to pray that they can figure something out. We know once we get out we will be working with OT's, PT's, dietitians, and other specialists. So we have a road ahead of us but we are hoping to have some kind of answers before we leave.
Thanks again for all your prayers and kind words, we appreciate them. And some have asked if we can have visitors, we can and we love it, but don't expect it! We know how far is it and parking is a nightmare, etc! Hopefully we can come home soon!!
Love and Blessings,
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