Wed May 16 DAY -1

Connor is doing great!   We were a little discouaraged this morning after the incident with his PICC line and he was just exhausted this morning.  We also learned that he will need to add 2 more really nasty medications to his already extensive list and we weren't sure how we could possibly get him to take them all especially since one of them will be administered 3 x a day.   Our room with our few belongings is getting disorganized and it is driving me crazy!  It is very time consuming to disinfect everything everyday and all the paperwork that we continue to receive is also very difficult to stay on top of.

In preparation for his stem cell- Connor and his dad went to get their haircuts.  We are slowly trying to get him used to having short hair and he should be used to seeing all these bald heads in the hospital but it doesn't seem to phase him so we were hoping for the best.  He came back from his haircut angrier than he has ever been, I heard him ranting all the way from the first floor.  He was saying how much he hates chicago and how much he hates the girl who cut his hair and that he wants her to move to China, very very far away from him and he never wants to see her again and furthermore he will never let a girl touch his hair ever again!  It ruined his entire afternoon.  I felt terrible that cut his hairprematurely b/c his hair had not started falling out yet but we thought that it would be less traumatic this way. 

I don't think he liked this look very much.

Not a great look. He is now bald.

I was able to beg a smile out of him. He still doesn't like it much but I think he is adorable!

He made a friend yesterday named Hunter who is from Ohio and is here for some problems with his liver and an enlarged spleen. They played DS together and we heard them giggling in the living room.  It made his night and they were able to play together for a few hours and ate dessert together.  Hunter is able to swallow his pills and did a little demonstration for us and Connor showed Hunter how he takes his meds and he did it within 2 minutes without one little complaint!  Amazing!  We are going to ask for an audience every night for meds.  We bought some herseys syrup and had him keep that in his mouth and swallow the really gross meds after it and I think it helped a little bit.

Thank you all for your prayers, his PICC line looked really good and there is no sign of infection.  He has had no fevers and he ate half a box of mac & cheese and asked for some snacks again.  A great night.  He still probably is not getting enough fluids so we may need to get homehealth to deliver some IV fluids in our room for the weekend but so far it is going great!

P.S. I have changed the settings so that anyone can leave a comment. Please let me know if you have any problems.

Good night! We are SOOO THRILLED for tomorrow.

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