We've been home a week. Our whirlwind trip to The Mayo Clinic consisted of 9 medical appointments, blood work, a lumbar puncture, a sleep deprived EEG and a 24 hour EEG in a short period of 4 days.
We are incredibly thankful for so many people who were praying for us! Unfortunately, Luke experienced a relapse of a virus that he regularly comes down with while we were in Minnesota. This caused his behaviors to run even more intense. His anxiety and OCD symptoms were also more prevalent due to the stressful situation.
Right now we are in a holding pattern with things. On Thursday, Luke was prescribed a "bandaid" medicine in the interim to hopefully provide some relief in the severity of symptoms. Unfortunately, no relief yet.
We expect all of Luke's test results to be back by the end of this week. Once they are all in, we can schedule appointments in the next week or so (with Luke's pediatrician and neurologist) to go over individual results and proceed from there. That being said, both of Luke's EEGs were essentially normal, which is a huge praise! From the labs that have already come back, Luke does have abnormalities with his immune system and metabolism that need to be addressed.
Luke's treatment plan will still include IVIG therapy. His first infusions are scheduled on 11/15 and 11/16. They will last 5-6 hours each day. I have created a social story to help prepare him and I am praying the process will go well. We covet your prayers.
We are humbled by those who have given to Luke's GoFundMe to help with the high costs of IVIG therapy and for our trip to The Mayo Clinic. Thank you for blessing our family by sharing, giving, and validating Luke's worth.
Medical bills will begin to roll in from Minnesota in the near future. If you would like to share, read more about Luke's story or to donate, please click here Luke's GoFundMe
-The Crawford Family
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