The last few days for the most part have been pretty good for Eli bli ayin hora. He made it to camp for short periods of time and enjoyed some trips with camp and some alone with us.

His blood and platelet counts continue to be very low and after seeing how low they were Monday the DR had us come in today to have both blood and platelet transfusions. Once he was at CHLA they also did an x-ray on his foot which he has been limping on a lot but BH that came back negative for any fractures.

Fortunately for her knowledge but unfortunately for her lack of communication the DR Eli had when he was diagnosed took off a year + to do research and is now back. The communication with the DR that took over in the interim was really good and he was always there to answer our questions and concerns. The old DR came back 7/1 and already today it clearly showed. Instead of the transfusion starting right away it took 2 extra hours for her to just sign off on the orders which gets very easily frustrating for both Eli and us. So instead of it being 3-4 hours in CHLA it was closer to 7 hours by the time all was done.

The same goes for the DR in MSKCC we have been emailing calling and begging to get all the info correct so that we can schedule everything properly and get back at the earliest possible time but of course we just simply can’t get a response. Eli needs a new line as he currently has a temporary line and since they are going to need to give Eli anesthesia when putting in the catheter we have been asking since the day they put it in that when we come back now for IYH round 2 of MIBG therapy. That to no confirmation and almost just the opposite the nurse has said well why don’t you just do it in LA which is crazy because how many times are we going to have to put Eli under anesthesia. Also it would require being in CHLA 24-48 hours which would be additional time.

Anyway to put it in short we are looking and davening for answers and direction and IYH next week once we get to NY we will have all of them by then. In the meantime please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.