Aaron's Hyper IgM Journey

Tuesday, December 18, 2012

So Much Good

I feel like I am walking on water right now.  Out of nowhere Aaron starts adding numbers together.  1+1=2, 1+2=3, 1+3=4, 2+2=4.  Before transplant, Aaron was ahead of his age in many skills.  About a month ago, I was told Aaron is delayed.  He cannot draw a straight line or a real circle.  I was devastated.  Not because he is delayed, but because I never showed him how.  I was too concentrated on keeping him alive, I forgot about all the other things like circles and lines.  I don't know if he should be adding numbers yet or not, but I never taught him how.  I am super excited to see that he is still learning.

Another huge and exciting point of my day was while Aaron was tricycling .  He was having trouble with the pedals.  I couldn't figure out what was going on.  After about 15 minutes, I decided to adjust the seat back for him.  Sure enough, that was the problem.  Aaron GREW!!!!  He has been on high steroids that prevent growth, but he is finally growing again. 

Aaron is also a lot more playful lately.  He watches the iPad a lot less and asks to play.  He doesn't play with his trains that much lately.  He has two new toys that have taken over.  He makes toy sandwiches and cuts them up and plays with a rocket ship. 

Health update: (1) Aaron's kidney numbers are in a normal range for the first time since transplant.  This is huge news.  (2) Aaron's EBV came back about a week ago.  The numbers got high enough to cause some concern.  The doctor wanted to wait and see what Aaron's body would do.  Sure enough, the numbers started going down on their own.  They did give him a drug to help get rid of EBV, but this was huge news as well.  This is a sign that his immune system is working a little.  (3) Finally, I am starting to believe the photophoresis is working (still a little too soon).  We have gone down quite a bit on the steroid without having any bumps along the way.  In the past when we weaned the steroid, we would sometimes have to increase the dose temporarily or stop the wean.  We have gone down week after week on the steroids since October without any problems. 

I feel like the luckiest Mom in the world!!!!!

1 comment:

  1. One day at a time my sweet friend. I can't wait to meet and get to know your sweet boy! I am so excited to hear the news about his health. I know it has been a long road, and I know it isn't over yet, and there will be more bumps, but I feel like he is on the same path I was on which is one of trials with success in the end. I love how excited you are. I love that this will be a good Christmas for you. Treasure your blessings.

    Love you tons!