Aaron's Hyper IgM Journey

Friday, July 20, 2012

Better than ever

We are counting the days til we go home (5 days)!  I am trying to pack, but that is very hard with a two year old following around at my heels all day.  We will ship most things back home and pack the car with the rest.

Serena left to go back to her Mom's on Thursday.  We miss her.  I was surprised at how bossy Aaron became with her here.  He tried to tell her what to do all the time and he would get mad when she didn't listen.  They both need to learn to share.  The visit was tons of fun. 

Aaron's health is as good as we could hope for.  Liver and kidney numbers are still slightly abnormal but within a range that we do not worry too much.  The white blood cells are still pretty abnormal, but we are told that those cells will come in eventually. 

He is almost off the steroids.  As the steroid dose is decreased, his personality gets better and better.  He finally sleeps on his own again without screaming.  Sleeping is still a problem though.  He is on IV fluids to regulate his electrolytes and I have to change his diaper every two hours.  This wakes him up and then he wants me to stay with him.  I am not getting enough sleep at all. 

His hair is starting to look good.  He still has some bald spots. Aaron's face is thinning a little.  He has only lost one pound and really needs to lose a few more.  They say the weight will come off slowly.

We have gone from watching trains to chasing trains.  We go to our normal train spot.  Once we see a train we drive faster than the train to other spots to see it again.  We even found a train yard that Aaron loves.  Aaron is going to miss his trains when we get back to Orlando. 


  1. What a great update. Our prayers have been working!

    1. Fantastic...welcome home little guy (and all). We have trains here too! Hope to see you soon Chandelle.