Day 44....fish mobile

Friday, November 2, 2012

Dillon received a very special gift in the mail yesterday.  My brother is an artist...and he and his daughter made this amazing mobile for Dillon's room.  THANK YOU MIEL AND TODD!!!!!  Really a special and thoughtful project you did for Dill Pickle. 

Miel also had her whole 1st grade class make cards and send to Dillon, which he loved because they were so cute!!  THANK YOU MIEL AND AUNT KERRI!!!

Labs today were still really good.  Still no need for blood or platelets.....I am shocked quite frankly.  At this point, each time we go in to the clinic I bring books and food and the ipad and lots of stuff because I figure we will be there for hours getting transfusions....and then they come in and say he does not need any and we are free to go.  WOW!!!!  His platelets are holding steady at 55 and hemoglobin is 9.7.  Both are still very low if you were to check what "normal" levels are supposed to be....but for a post transplant kid this is FANTASTIC.  If you are wondering why I fell off on giving you the ANC each day...it is because I don't get that information from the clinic by the time we leave each time.  The hemoglobin and platelet labs come back quickly but the portion that we need to calculate the ANC takes longer and since he has not had to stay for transfusions we leave before it is available....then by the next appointment I have forgotten that I was going to ask for it...and the cycle begins again.  I did calculate one from last week and it was about 1300 so much lower than it was when he was on the bone marrow stimulating drug but his little body is holding its own right now.

Some small victories to share today.....
After the clinic visit I asked Dillon if he wanted to go to Red Box and pick out a couple of movies for the weekend.  SURE he says with enthusiasm.  I said..."You have to walk to the box with me to help me choose"....and he says...."Obviously mom."  The two things of note here are: (1) He agreed to get out of the car and walk across an additional parking lot and (2) He was a bit sassy with the "obviously" which is his regular personality shining through when I made the otherwise "dumb" statement.

Normally Dillon has been sleeping much of each day.  Getting up for a couple of hours and then retiring back to his room exhausted and sleeping for 2 or 3 hours. ....well today he got up at 9:30 and at 3:30 I insisted he go nap because he has a basketball game to watch at 6 and he will never make it through to the end without a little snooze.

The food of the day was some lo mein noodles.  He had about half a cup and never really complained of nausea although he gave me the big sad puppy dog eyes, so maybe he felt it but just did not mention it out-loud.  The doctor basically told him today that if he loses much more weight they will have to readmit him to the hospital.....that should be a motivation for getting more things chewed and swallowed over the weekend. Truth be told, I think they would increase his home TPN before they readmit him to stabilize his weight, but I was happy the doctor used the big scary "back in the hospital" line because I think it will get Dillon focused on the importance and the significance of his consumption. 

He continues to be HHV6-negative so the 5 hour IV infusion that we have to do every day will be ending next Wednesday or Thursday if the next test is also negative....YEAH!!!!!!!

Dillon has basketball on the brain.  He is on the ipad looking up teams, memorizing stats, plotting his day so he has energy to watch certain games.  It is FABULOUS to have him interested in something and showing motivation....he has gone weeks without really wanting to do much of anything at all.....a definite improvement.