us as one of the longer ones we have had . We drove Ethan to LA on Tuesday
evening as we were lucky to get a room at the Ronald McDonald House. We
got up Wednesday with enough time to eat breakfast and get to CHLA on
time for our 8:30 appointment. We had two "breathing" treatments which Ethan
has had before, but this time it involved new meds. Then Ethan had his regular
blood work and then the wait for his "team meeting". When we met with his
lead doctor, she was VERY happy that his blood work had made major
improvements and his overall check up was good. Due to his recent blood tests
etc. the "team" has made some changes to his meds and the time schedule. Ethan
will continue with his weekly lab schedule and his new meds schedule. Lead
doctor will see him in one month if all goes well - and it will !
Because he is part of a clinical trial, his meds are specially made for him at
CHLA on the scheduled Wednesday. Due to the weeks skip and the med changes,
they were not sure what meds to make, which required us to wait for just over
3.5 hours to get them. But time was not wasted, Ronald McDonald House was
hosting a carnival for all the children there that day. Ethan played games, won a
few prizes, got to ride a real horse, and had some food. What more could you
ask for ?
Due to traffic and a long day at CHLA, we got back to Riverside about 8:30 pm.
Ethan was happy to be home, in his own bed, and with his own family. We as
always want to thank everyone for their prayers and support. We have extended
the time line further than expected and the outlook is good - THANK YOU ALL !
Ethan riding his first horse. At the
Ronald McDonald House 8-7-2013
Ethan and Grandma sitting on the many carved
creature seats located throughout CHLA.
8-7-2013
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