Reply To: Granny seeks help for Mentally disabled and deaf adult/child with CIDP

February 25, 2019 at 1:24 pm

Hi Electra, Your timing is spot on. Jason begins his therapy tomorrow. The first dose will take place in a hospital out-patient infusion center followed by three consecutive days of home infusions. He was originally scheduled in a different center but they cancelled at the last minute because the nurses were concerned that he might experience side effects. I have been literally on the verge of a melt-down over this whole ordeal. The “not knowing” is the hardest part: Not knowing if the diagnosis is accurate; not knowing how to explain to Jason what is about to take place; not knowing how he will respond to treatments (physically and emotionally); not knowing what we can expect from the infusions; the list goes on and on.
When life was gloomy or she was stressed about something my Mom would say “This too shall pass.” This promise has been my salvation many times, but in this instance I’m not feeling the same comfort and peace from this knowledge.
Thank you for thinking of us. Hearing from you made my day. I promise to keep in touch and hope you will do the same.