Aaron's Hyper IgM Journey

Thursday, April 11, 2013

Photo is working!!!!

Aaron is doing amazing! I couldn't be happier. We have weaned really low on Aaron's steroid with no gvhd complications. Last time when he got this low on steroids, Aaron was so bad off he ended up being air flighted from hospital to hospital. He should be off the steroid in a month. This is the biggest milestone we will hit post transplant. Starting in May, we will be going to Cincy only once a month. Thank you Marsha for being the reason we are getting photo and doing great.

He still has norovirus which causes him (and me) to still be up all night with trips to the potty. Since he still has zero immune system, he can't fight this off. He has had it for three months now. He also still has the huge tummy that is not getting better. Hoping this resolves itself soon. His energy level is great, but his tummy gets in the way of his progress. He could benefit from PT and OT, but we haven't been able to work that in our schedule yet.

We have been enjoying life. My sister came for a visit over Easter and we all went to the coast. Michael is interested in sailing. We found a super cool sailing instructor for him that guarantees he will be on his own in the water after an hour.

Serena has visited numerous times. She is always a delight. We can't get enough of her and look forward to her staying with us for the summer.

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