We are at City of Hope awaiting the first infusion of the Car-T cells.
Jen was released from acute rehab on Saturday morning. We could have kept her there until Wednesday, but with the Car-T schedule, Sunday being a down day and the fact that they don't do rehab on the day of discharge, Jen would have stayed 4 additional nights and received only 1 additional day of therapy. Due to this, her doctor felt that Jen should be discharged on Saturday.
We are still trying to coordinate outpatient therapy for Jen. I asked weeks ago (and several times throughout the past several weeks) about setting up outpatient neuro PT, OT, and Speech therapy - but was told we had to wait until she was being discharged from acute rehab. Now every place we have tried is booked for at least a month. We are trying to bridge the time with in home therapy - we will have to see how that works out.
Jen's use of her right hand has significantly worsened again, and is now probably as bad as it has been. Her balance is still good, but her speech and communication ability continue to be a struggle. Jen is often frustrated and emotional over her limitations, but she is hopeful for the trial. We just hope it works and that we can at least prevent any further declines in function. Please continue to keep Jen in your thoughts and prayers.
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