Aaron's Hyper IgM Journey

Wednesday, July 3, 2013

Little chatterbox

This is a longgggg overdue post. Sorry to those that have supported us along the way and I have left you hanging.

We tried another steroid wean without success and had to go right back up on the meds. That was disappointing, but we are still plugging along. He still has zero immune system and is still just as fragile as ever. We are expecting at least another year and a half before we have any hopes of him entering society in a normal way.

However, there is some good news. Aaron has become quite the talker. I have a feeling his sister has rubbed off on him. Serena has been staying with us this summer and I have never met anyone who can talk and talk the way she does. They have also done a lot of laughing lately which makes me happy.  

Aaron has had the norovirus now for about six months. Without an immune system he has no way to fight it and there is no medicine to help. The doctors have tried an experimental treatment with breast milk supplementation. With only one glass a day (loaded up with strawberry syrup), he has gone from pooping every two hours to only three times a day. This means we are all getting more sleep at night. Yay!!!!

Aaron has lost about six pounds and looks great. His skin looks better than it has in a long while.

We are also enjoying Serena's company. She is a beautiful, fun, and talented little girl.   She enjoyed a week of VBS, had her acting monologue performance, and played her violin in a concert. She is looking forward to soccer starting again soon. She is one of the star performers.

We even got to have another visit with cousin Aidan. We love when he gets to visit.

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