10/2/04 "A Little Outing"

Since the weather has been so beautiful and unusually warm for this time of year we took Cass on a little walk outside around the hospital grounds. He and his big brother, James (2 1/2), sat in a wagon while Cass' dad pulled and I trailed with the IV pole behind. He enjoyed it and it wiped him out for the rest of the evening. We were able to take some pictures. Cass' big sis, Alexis (5), was at school and was unable to join the fun. Today we all went to visit him and spent a good while there. Lexi was able to sing to him and decorate his room with more of her drawings. They miss him too. A least the hospital is close enough so we can all spend as much time together as possible. The staff there has made it so much easier to leave Cass when it's time for me to go home. They are his family away from home and have been so loving towards all of my family. It makes it less stressful on all of us and makes for a pleasant trip when the whole family visits.
He has gained weight, weighing in at 9lbs and 3.5oz. Last Saturday he weighed in at just 9lbs. He is slowly but surely progressing in weight, but we still have a long ways to go. Before any more surgeries, he needs to be healthy and atleast 10lbs. He is on a 21 hour feed and 3 hours off through his feeding tube so he is pretty much eating constantly, except for those 3 hours. He's also on a higher calorie diet to hopefully boost his gain alittle. Since his tracheostomy and the GJ Feeding Tube he is more awake and interacts a lot more. It's amazing what breathing and eating can do for ya!
We're still trying to figure out the whole home nursing situation and insurance thing. Nothing new has changed with it. We're hoping something or someone will budge so he can come home this week with home nursing. His health has been great, he is stable and no new fevers or infections, knock on wood. So I guess we'll just wait...