Yesterday @ Akron Childrens Hospital, Abby had several blood draws, PT, & an EKG followed by her appt. W/ Dr. Cohen. She was a champ through it all! The blood draws & EKG were all with-in normal limits. Her physical therapist was very impressed with the increase in Abbys mobility. The PT was curious about the Upsee (walker harness) (pictured below) after the last appointment so we brought it for her to try. It was a hit in the rehabilitation dept. Dr. Cohen unfortunately cannot comment on Abbys progress since hes a lead investigator on the drug. The study is coming to a close at our next appointment in Nov. Since EPI-743 has not been approved by the FDA yet we were asked if we would be willing to allow an extension for the drug study. Without a second thought we agreed. For an undetermined time we will continue to travel to Ohio regularly to allow Abby to keep taking EPI-743. The drug (pictured below) is pre-loaded syringes given via g-tube 3 times a day. Thank you for all the continued prayers & support.
Posted on: Thu, 07 Aug 2014 17:23:52 +0000
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