Aaron's Hyper IgM Journey

Tuesday, September 18, 2012

Aaron's Status

The doctors decided Aaron has mild gut gvh. They have him back on steroids and he is responding well. His diarrhea has decreased. A separate issue is that his gut does not absorb nutrients. They said that his norovirus scarred his gut allowing the gvh to take over. We are basically going back to the beginning. Aaron will be on IV steroids and then switched to oral steroids once he improves. Then we will have to wean the steroids and then cyclosporine. He cannot develop his immune system until both these drugs are gone.

His started shutting down the past week. He hasn't been able to stand or walk and he barely talks. This morning he woke up with his head kinked to the right side and could not move his neck. I could not understand his speech. He mostly mumbled.

We had occupational therapy, physical therapy, music therapy, speech therapy, and massage therapy all work with him today. My sister got him a cat piano that he interacted with and I got him a hungry hungry hippos game. By the end of the day, he asked for his iPad. I made him stand up beside his bed to watch and out of nowhere he started dancing! He was stopping his feet, shaking his bum bum, and waving his hands in the air. After that, he started chattering like a little chatterbox.

YouTube Video

I am using all of the suggestions people have made and I think it is working. He is getting away from the boredom of the hospital room and opening up. Again, THANK YOU!!!!

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  1. how awesome to hear he's responding! Way to go! Keeping my fingers crossed for that nasty GVH to go far. Far, far away!

  2. So Sweet. Thinking of you and praying for you always. Love, Natalie