Casey has been doing a bit better over the past few weeks. She is still on oxygen most of the time, but there have been a few days where she was able to take it off for a few hours here and there. Our nursing situation has improved a lot as well. We have a new night nurse that is working Fri-Sun nights and we really like her a lot. She’s great with Casey and caught on to everything pretty quick. We also have a new day nurse that is covering our Fridays. As long as everyone stays with us for a while I think life will be a lot better.
Tim is still really busy at work, but he is off the week after Christmas so that will be a nice break for him. Even though when he is “off” he is usually still kind of working. He’s been trying to get a new entertainment center built over the weekends. Maybe if he can’t get it done before Christmas that week will give him a chance to finish it.
The Angel Ornament Party was last night. This was our second year hosting this event with Palliative Care and sMiles for Sammy. I really LOVE this event and the families that attend. We had a great turn out last night and the families made lots of great ornaments. I have some volunteers meeting Sunday to decorate a special tree near the hospital.
Casey had a GI appointment this week (just routine stuff). She is almost 53 pounds now!! The appointment was supposed to be 6 months ago but between me needing to sleep during the day and Casey’s health, we kept having to reschedule. It was a full year since our last appointment. Everyone in the clinic was SHOCKED at how much Casey has grown. After her appointment we went to get a new baseline chest xray (ordered in September, but again we just couldn’t get there). The machine was broken and it was about 12:15. They said it would be back up by 1. Since Casey was having a good day, and we really needed to get this xray done, we decided to have some lunch and get the xray after.
This time of year the hospital does not allow children under 13 to visit (cold and flu season). We didn’t want to take Casey to any of the nearby places that would be packed since we knew she would not do well there. We told the nurse at the desk in the ER we just wanted to grab food and that Casey is only 9, but that she is well. The nurse agreed to break the rules for Casey. After lunch we went back for the xray then came home for Casey to do school. She did great all day.
Last weekend my grandpa came over to help Casey decorate the tree. Casey LOVES to hang out with her great grandpa- so does he. We got the rest of the inside decorations done over the next few days. Now we just need to get he outside lights up.
Next weekend is the special needs holiday party. We have had a great response and expect the party to be the best one yet. Casey’s girl scout troop volunteered to come sing some carols and to help the kids with the holiday crafts. We’ve got Santa and a few surprises lined up too. We’re really looking forward a fun party.
