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So either our scale has been wacky for the past week or Danny has lost a pound again. :/ I called the GI today for a prescription refill (which they won't do unless he comes in so I have to try and get the ped to fill it...UGH!) and asked the nurse if they wanted him to even come in since they had no idea what else to do. She said she was going to talk to the PA that we had been seeing and are now switching back to and call me back this afternoon...guess what...no call. I will call them back tomorrow or stop by since we have to see Endo at the hospital anyway.
We are also still waiting on the GI we are transferring to (within practice transfer from the last time we were up there in June since we are getting a new referral). The one we are transferring to has to sign off on accepting Danny as his patient before they will schedule an appointment. The insurance won't start the referral process without an appointment and the doc has had almost, if not 3 weeks to sign off on it. So I emailed our care coordinator for hematology in Cincinnati and asked if there was anything that she could do and her response sounded promising. So hopefully we will get the ball rolling on this soon because we really need to start figuring out why he is not only not growing but occasionally losing weight so we can start to fix it. That is the rotten part...the GI here has no CLUE where to go next so there is nothing that they can do here to check him or even temporarily help him until he can get to Cinci... If a feeding tube pumping thousands of calories in won't work than they are out of options... I just wish we could get up there so that we can finally start getting him straightened out...