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Things are Well, For the Most Part

Sorry I have not updated here. I have been trying to fix our computer. Things are going relatively well. We are still down a pound and cannot get Simon to drink to save our lives so I'm going to have to start putting liquid through the g-tube and hope it doesn't affect how he is eating because he continues to eat quite a bit without trouble which is such a blessing. I hope the liquid resolves itself and Simon starts to love drinking as much as eating. His IGG is up to 505 which is awesome and tells us he is making his own even without having the ivig infusions. We are to start tapering cyclosporine again so please pray it does not affect Simons donor counts. We did vntrs yesterday so will have them back this afternoon. Pray they are up and stay that way even with starting to take him off the immune suppressant. So that is about it here. We are scheduled to go to clinic next Tuesday for pentamadine infusion and to meet with the immunologist and then we leave for St. Louis for the IDF conf. We are excited to be meeting two other NEMO families there and Dr. Orange who is constantly researching NEMO. Please pray all goes well and that we have a successful, safe trip full of information and fun. Thank you and God Bless. Tracy and David

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