In the words of Jeremy...

Yesterday morning since it was J's day home he was bugging me for stuff and I was trying to get ready to go to work, which was a huge adjustment with the time change so I said to him, "Jeremy go check to see if your nurse is here" so I hear him thumping through the house, "Oh nurse, Oh nurse" totally cracked me up, she has a key so she can come in.

Last week was crazy, we lost our nurse, faithful, dependable one we have had since July.  I'm OCD and love structure in our lives as much as Jeremy does.  I hate staff changes and to train anyone new on Jeremy plus I don't have the most patience when it comes to showing someone Jeremy.  We did get one of the nurses we started out with last year, so she was familiar with Jeremy, and he liked her she just couldn't work the hours last year.

I flew from Tulsa to St. Louis on Friday, met Joni rented a car and drove to Columbia, Missouri this was a mini-vacation for me but we took the opportunity to meet with Dr. Fete, at the University of Missouri Children's hospital to talk family-centered care and partnering with families.   They are wanting to get more families involved and we have done some major ground work in Oklahoma with that, personally I think they have already done an awesome job.  We had a nice meeting, then lunch and trip to the mall.  We checked into the motel and got dressed for the event and headed out for the evening.  Pascale's Pal Silent silent auction fundraiser, it is dear to my heart as they are the group who brought Jeremy up a nice basket, gave him a colored nook and was a support for me so I wanted to support their efforts.  I got to visit with a nurse we hadn't seen since we were discharged, she was Jeremy's night nurse about every night we were on the floor, she had him before surgery and the few days after we were on the floor.  I never even took Jeremy up there for the night shift to see him so I told her that when we come back up in July we will make 2 trips to the hospital, one during the day and then back up at night.  I'll also make sure she is going to be there that evening or we will have to get in touch and meet up with her.  I flew back home on Saturday evening and got to snuggle with my little funny boy.....It was a nice flight both ways and I took power naps, it was awesome.....