- I'll take a nap and then I'll execute the rest of my escape plan.
I love my new hallway greeter job. My first nurse and girlfriend Megan made me this hat on my first day here! Hi Megan! No wagon rides post op....it reminds me of my ride to surgery! stroller rides are cool. I may try the wagon again soon.
- There's this really cool game...my opponent tries to use as much tape as possible to keep this light on my toe and I try to pull it and chew it off...I ALWAYS win!!
- Who knew eating could be so much fun?
Jerry moved to the 5th floor which a good move toward home. It is not so good space wise...we are really crammed in there with another family. Jerry has been getting back to his old self pretty much...especially today. Yesterday he had an echo (heart ultrasound) that showed his heart function was declining. So they had to return one of the IV meds they had taken off. They test his blood gasses too and those were bad but now improved a little so they took him off the IV meds and moved him to the 5th floor. They will redo the echo on Thursday. He is eating like crazy (compared to the 2 months prior) and it is so nice to see him eat without pain or upset. We have had a lot of freedom with being unplugged from the monitors and that is a great feeling too. The monitors are kind of pointless for JJ since he pulls everything off. The monitor always has question marks!Friends Jen and Trish came to visit last night and brought a few things we needed. It was great to see them. They maybe got a smile or 2 from JJ but he was pretty crabby from not napping. HE has rearranged his schedule so that he naps from 4 to 6, goes to bed at midnight, and plays in bed from 4 to 6am.
Isaac Has been in Cleveland since Thursday. He had a fever the first few days there so That was hard (only for me!). But he is having a blast with his cousins now.
I am starting to think more about what we have been through and how amazing everything is. It is so scary to realize what danger we have been in over the last year. We are so thankful we got here in time . I may continue to worry more than before when he exhibits changes and will probably be more assertive about requesting echos more frequently if I am concerned. For a while, he will have them weekly and then monthly anyways. Thanks for all of your thoughts, prayers, and keeping up with the blog!