I know I've gotten behind and I was only able to update caringbridge yesterday.

Nolan woke up yesterday not feeling well and having low oxygen saturations. He had a CBC done and found out his blood counts were pretty low and he needed a transfusion.  We didn't have time to do it yesterday so he was put on the schedule for today.  Poor guy was up most of the night with terrible headaches and he was showing signs of dehydration.  When we went in today he was type and crossed and they had a bit of trouble finding the right amount of blood.  We needed to make sure he got enough because his counts were continuing to drop pretty quickly (his hemoglobin went from 8.9 yesterday to 7.7 today).  I could tell Dr. Aguilera was concerned she came in two times to check on him.  We were at the clinic from 9:30 till 5:30 and he slept the entire time.  He got a bolus of fluids and two units of blood.  He seems to have perked up a bit but still slept all the way home and climbed in bed as soon as he was able.

So instructions are no more everolimus until his counts recover and he probably won't be getting Avastin Thursday.  Dr. Aguilera is thinking his counts could drop some more. Here we go again...
I also have to push the fluids.  His urine test are continuing to show high protein (not good) This is a side effect of the avastin and dehydration doesn't help.  Nolan just is not able to drink enough during the day and we can only get so much in him overnight.  This means Nolan is going to have to go back to wearing a back pack with fluids/feeds.  He's not going to be happy about this, but I know he would rather stay out of the hospital.  Wednesday is his Birthday! He will be the big "10" :-)  He is so excited and I want him to feel good and really be able to enjoy his day :-)

Thank you for all the prayers and support!!