Wow it's been a bit since I updated this.  We have been squeezing every last bit of his energy into making memories.  On Friday, we reached the point that it is no longer "As normal as possible for as long as possible."  This past week it was a talk we had several times; do we pull him out yet?  Well Friday we did, pulled him from school sadly it was time.  His pain has grown, and he is sleeping a lot more. This next section of our battle is still up in the air.  And I hate it, I hate the not knowing and the no plan.  Well, there is a plan just not one that is set in stone yet. Wow my thought process is everywhere, so let me start over:

The last post was during his last 6 day stay, got to leave on Saturday and by Wednesday we were back with fevers.  A common cold put him back into hospital for 4 days.  That Friday was the Gala that we were excited to go to, since Ezra was in the hospital, we were unsure if we could attend.  Alot of people worked a miracle and we had a date night and got to go. Although walking into a hospital dressed up is an odd experience, the nurses on the ped's floor defiantly know how to boost your confidence! The night was amazing and needed: 2 big take aways from the night. There is a new drug out that when Ezra is ready for maintenance care and drum roll please...... Childhood Cancer now will get 8% of the cancer funding.  I know it doesn't seem like much but that's double than what it was and hopefully some good will come from it.

Because of the fever our protocol (battle plan) was pushed back a week to give him time to recover, which he did very slowly. We had Zephy's softball games to attend that week and family nights of movies and snuggles.  Another short hospital stay and a welcome break with Bre.  She always brings a smile to all the kid's faces and Zeke actually hugs her.  Then on Wednesday Ezra had PT, which he really enjoyed but it wiped him out for the rest of the day. Thursday, I got him early at 1ish from school because he had slept the whole day.  So, we knew it was time, especially with RSV and Flu season starting and his radiation coming up.   Friday worked out perfect to be his last day because Zeke was in the Special Olympics!  I am so incredible proud of how far he was come in getting out of his comfort zone. He won 1st in all three of his events and wore those medals all day.  We also had Gretchen brought up to stay with us, in the hopes that she will encourage Ezra to get up and move around with her.   

So today is day 2 of our 6 days stay here with the next few weeks somewhat planned.  Sadly, though today is Daniel's birthday and we are apart.  This is the first birthday that I've missed since I've known him, and it really hurts.  Zephy also has a band concert tonight, another event we are apart.  Well, I hear my name being called so I need to sign off, "Pity Party of One, Pity Party of One your table is ready!"