Aaron's Hyper IgM Journey

Tuesday, May 1, 2012

A beautiful weekend

Thunderstorms appeared off and on all day Saturday.  We went to the mall for our morning walk.  Aaron did great and walked quite a bit himself.  Michael bought a 1000+ piece train from the Lego store.  Aaron and Michael spent the whole day working on the train and I was able to catch up on other things. 

Sunday we ran errands in the morning and then dropped Michael off at the airport.  After a long nap, Aaron wanted to play for the first time in months.  We got on his play mat and played trains for a long time.  He did not have any rages all weekend.

However, he did cry himself to sleep which was heart wrenching for me.  We have been working with a behavioral therapist to help Aaron become more independent again.  Our goals are sleeping and eating on his own.  She assured me that after one week, he should be sleeping without crying as long as we followed the plan.  I hope so.  As far as eating, he is doing better.  He will eat some things on his own and he taught himself how to cut his cheese with a fork and knife. 

Monday we went to clinic for labs.  His liver numbers are almost normal and his skin GVH is getting better everyday.  His kidney numbers are slightly improved.  His WBCs and ANC (two numbers that are very important post transplant) have fallen drastically.  He is currently getting therapy to help improve his platelet numbers since they do not increase.  He has developed an antibody that attacks his own platelets.  His body still has a lot of fine tuning to be done.

1 comment:

  1. Chandelle - take heart - my platelets were the LAST to come back - I think it was a year and a half before mine were in the lower part of the normal range. My doc told me they would be the last to recover, so have faith. Sounds like even with all of the hurdles, he is right on track. Praying for a quick recovery for him every day! Miss you tons!

    Marsha

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