It continues to be a blessing to have Cutler at home with us, unfortunately he doesn’t seem to be enjoying it nearly as much as we are.  The last few days he has been constantly fussing.  At first we thought it was his teething, but then tyelnol and orajel stopped working.  Then we realized that he hadn’t had a bowel movement since Thursday.  After two days of stool softener, suppositories, and mineral oil he finally was able to push through this road block.  Because it happened right before he went to bed, we aren’t sure if this has resolved the issue yet.  My biggest fear is that he is fussy because he is so accustomed to having someone with him constantly.  If this is the issue, I fear the only solution is the tough love/cry it out approach which won’t be fun for anyone.

Aside from the fussiness, his blood work continues to look great and the doctors have cut us back to one visit per week already.  His platelets were almost at 200k and hasn’t had a transfusion for what seems like at least a month, but I am not sure on how long it has been.  Either way, the doctors are extremely pleased with the progress.  We will still do another spinal tap and bone marrow aspirate in a few weeks to be sure there aren’t any stragglers hanging around.

Unfortunately Cutler has lost all interest in drinking and eating.  Hopefully the recent emptying of his system will stem this along.  We haven’t had an occupational therapist visit since we were in the hospital, so we are anxiously awaiting that to start back up soon.

For now we just continue to pray for Cutler to be happy again and for us to find what makes him happy to have patience to continue to work with him on getting happy.  Kobi, his new nanny, has now been with us for a week and tomorrow starts her first day with him all alone, without Aunt Pat’s discerning eye.  So far she seems to have the perfect temperment to handle him and I think they will get along well.

Below are a few pictures from the past few days.

Cutler and Kobi during one of his few happy moments.

Cutler ready to head outside for a walk.  Being outside is one of the few things that seems to soothe him.

The smile comes as the door opens.  “Dad, enough with the pictures, get out of my way.”

The weather people are talking about more snow again this week.  Let’s hope it isn’t enough to do this again…