Aaron's Hyper IgM Journey

Sunday, June 29, 2014

Things are coming together

We left a day early and drove to Pennsylvania. We stopped by Steamtown, a train museum in Scranton. They had one of the original Big Boy Steam trains. We saw a real roundhouse, a turntable, and Aaron went on his first real train ride. The kids were in heaven.

Then on to Cincinnati. After getting only four hours of sleep each night, I broke down in tears. Finally, someone listened to me. I explained that I cannot function anymore. I cannot take care of Aaron or myself when I am exhausted. The pain team was put in charge of the situation. They first want to focus on Aaron's pain and make him more comfortable. They also are adding melatonin to help with sleep. So far his sleeping hasn't gotten better, but there is a Plan B if needed. I have also gotten permission to cut off his food/drink intake in the middle of the night. This will be a hard, but very much needed change.

Aaron's GVHD continues to be amazing. His skin is softer than ever and we should be able to wean even further in a few weeks. He made it to a level where his body can start healing. His kidney function was better this time. I was sad to find out that the discoloration on his face won't ever go away and he will be reminded of his transplant every time he looks in the mirror. I pray that he does not have a hard time because of it.

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  1. Aaron is so adorable and glowing with happiness!!!

  2. I am so glad for you and this young man can start the process of healing. Also, I can't even comprehend the struggle the two of you have been thru, God gives special love to those parents. Keep your chin up and always remember Aunt Mary and Uncle Jud are here for you.