This morning was not a one-time only event. The severity and
details vary but this is a taste of what we are dealing with and how unwell
Luke is. We love Luke. This neuro-immune disorder is wrecking havoc on our son
and on our family. Luke is a 9 year old boy who has taken naps 3 days in a row.
His OCD is off the charts.
It took 45 minutes of concerted effort to get Luke out of
his bed and downstairs this morning. Kicking, hitting, holding onto the
mattress, and more. He then refused to go to the bathroom, but, after
much coaxing, I managed to get clothes on him. He refused to eat any
breakfast, but with Scott’s help, Luke took his medicine/supplements and had a
few sips of water. Luke also emphatically refused to wear his cochlear
implants -so I put them and his breakfast in his backpack. He scratched and hit
and threw things this morning.
Jansen took the bus to school so he didn’t have to deal with
the drama or embarrassment. Scott and I got Luke into the van. He took off his
shoes and threw them at me. He then covered his eyes during the ride to school
and cried real tears. When we got close to the school he held my hand. As he
got out of the van, he hit me. 30 seconds later as he was walking towards the
school doors, he looked back and signed “I love you” to me.
This. Is. Hard.
We want our Luke back.
Would you join us in prayer that the IV Infusion treatments
will be successful?
-Jo Anna
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