I didn't update yesterday because I didn't have a lot of good things to say.  Today, I am updating to ask for lots of prayers for Cooper.  He is getting worse and worse each day and we know that something is not right.  Today, it has been a little like he never actually woke up.  He did wake up, but his eyes never fully opened and he physically couldn't do anything but lay on the bed.  Even propping him up on pillows to sit him up was useless because he couldn't hold himself upright and would just fall over to the side.  Everything seems to be hurting him and he has been miserable all day.  He had a blood transfusion this afternoon and I hoped that would perk him up, but it hasn't done any good so far.  We generally see a pretty fast perk up from him before the end of a transfusion.  His lactic acid jumped up even higher today as well, so his body is telling us that it is not handling things well.  We just need to find the probl

Cooper and I are so loving our time with the Kids and Mei!  He gets a bit grumpy with too much stimulation, so we are keeping things calm with movies, crafts, puzzles, and games.  Cooper is very good at telling everyone when he has had enough and he is getting plenty of rest and naps.  The funniest part has been watching how very possessive he has gotten of me.  I have to sit right by him and he gets mad when I hold one of the other kids or tell them that I love hugging them and seeing them.  He has spent so much time in the hospital and never done this until now.  The kids are adjusting to Cooper's needs pretty well.  We talked a lot about how tired he is and how he is much sicker than they are used to seeing him.  The hardest part for them is that he just doesn't have the energy to walk around and play like he used

Cooper had a much better day today.  Thank goodness!  I was worried this morning because when he woke up, he was in a lot of pain, however, we quickly realized that his belly was clamped instead of draining.  Once we got that taken care of, he drained out 300cc in 20 minutes and stopped retching and crying.  As long as we keep his stomach draining well, he does okay.  But even an hour of clamping him following his prograf twice a day is hard on him.  We held his feeds at 10cc an hour for the day again.  Dr.

I was so looking forward to an all wonderful news update.  Cooper has had a pretty good day today.  He woke up retching at 6:30 and stayed up from there.  After a dose of zofran, he settled into his morning nicely and promptly requested a walk and play time.  We walked around for a lap, sat and looked outside for a bit, and then came back to the room to sit on the mat and play with toys.  Exactly at 10am, he headed to the toy room for an hour of fun computer time and toys galore. We stayed for an hour and then left so another isolation kiddo could use the room.  Once back in the room, Cooper sat on the mat and asked me to go and get some other toys from the RMH.  I ran over there and loaded up with toys to bring back.  After just a short time playing, he decided it was nap time.

I think that about sums up Cooper's day!  This morning he had a new gj button placed in IR.  It was a quick 10 minute procedure and we were all done.  Around noon, he was started on feeds at 5cc an hour into the j tube (meaning he is being fed directly into his intestines instead of his stomach).  He was already very grumpy leading up to that.  He has had much less energy and tolerance for things today.  We only managed about a lap and a half of walking all day, and he collapsed in a heap at the end of that.  His legs just gave out.  He played on his mat for maybe a half an hour and then sat on the couch with me and watched a movie for a little while.  For the most part, he just wanted to be in his bed.  He requested a nap at 11:30 this morning, napped until around 4, and then asked to go to bed at 7.  He didn't actually fall asleep until around 9, but he just wanted to lay still and drift in and out of sleep until then.  A

Today, Cooper walked almost 4 laps around the unit.  He didn't quite make it on the last lap and I had to carry him back to the room, but he spent most of the day NOT in bed.  The last lap was after he had been sitting on the floor mat playing for a few hours and then sitting on a bench by the window out in the hallway for a while, too.  His first 2 laps were back to back with Matt.  He held Matt's hand for the first part and then I took over with the hand holding.  Then he played ball with Matt for a while.  The laps later in the day, he refused to hold hands and wanted to walk by himself.  Those laps were slower and wobblier, but he kept saying, "I can do this by myself." and so he did!  Early this morning, Coop went down for an upper gi with small bowel follow through.  The team wanted to see how Cooper's stomach is emptying and how his bowel looks overall.  It took more than 3 hours for the barium to travel from Cooper'

 As each day passes, Cooper is blessing me with more and more glimpses of his big personality coming back to us!  Today he has been very busy and he hasn't needed nearly as much pain medication as the past few days.  He played sitting in a chair for about an hour this morning (some with his OT and some with me) and then walked more than a lap with Matt.  All of that after a very early start to his day for scopes and biopsies.  We just got word that there is no sign of rejection at all!  PRAISES!!!  Kyle called to tell me after checking out the specimens under the microscope himself.  This morning, we talked about doing an upper GI in the morning to see how well he is emptying.  Then we'll decide if we need to put in a regular g button or go to a gj button before we start feeds.  Cooper's last remaining jp

There isn't much to report from the front lines up here.  Same story, different day...Cooper is still having a lot of pain, but he is doing okay otherwise.  He is getting up to walk a little each day.  It is a lot harder for him at this point...partially because of the pain and partially because he has been in bed for the better part of a month.  He is smiling more each day, though, and that is a big step in the right direction.  Now if I could just get him to sleep a little more at night, things would be great.  He wakes up just before it is time for more pain meds and it takes time to get him back to sleep each time.  That means that this Mommy person is so tired that I am actually falling asleep standing up these days.  That's a pretty cool feeling when you wake up and realize it!  Cooper's small bowel hasn't turned on quite yet, so he isn't able to start even slow feeds into his belly, although he is eating little bites of food here a