Looking Ahead

Well, we are enjoying our time at home very much. We were discharged yesterday and got some good news from AA's eye doctor at Sloan. His eyes are in perfect working order. Everything was great and the issues he has been having with his vision is due to the cancer growing. At this point in the game we will take all the victories we can get. This helps us out also because one of the few things that keeps AA entertained is his  love of his favorite cartoons. At least he can continue to see them and have fun.
As always we were very happy to have a nice send off from our friends at Sloan. Dr. Gilheeney, Dr. Lightner, Dr. DeBraganca, Cynthia (la Nutritionista), Alyson (Child Life), Daniel, and Juliana all came by to say bye to us. We thought it was cool and it always helps us out in coping with this situation.
We started the next phase of AA's care last night which is hospice care. We had a great admission RN come visit us, Kristi. She was amazing in her ability to understand our situation and the varied emotions and feelings that we have felt and feel. We wish all RNs were like her.
We are also feeling sleep deprived today because of AA's medication which is administered every six hours via IV. This is the antibiotic for his port infection. We both woke up to help each other but that doesn't make sense. As a result, the infusion nurse came by today and both she and Michelle showed me how to work the new pump and be able to administer the IV meds. Please that was easy, I am a pro already after almost 9 months of this battle. The good thing is that Michelle and I will do the day shift together, then I will do the midnight shift and go to bed and she will do the 6am shift and I can stay sleeping. Lord knows we need as much rest as we can get.
Yesterday and today have been pretty good days. AA is still eating very well. He ate croissants, mozzarella sticks and even had some of his grandma Alicia's rice and meat sauce which he loves. He only ate a bit of that because he was already stuffed from the bread he ate. He also had a bowel movement which was awesome. He also was smiling a lot and chuckling to some of his cartoons and I even caught him singing to some songs as well, especially the Shakira song, "Loba" which he loves.  He also loved seeing Beemer again...
Another thing that surprised us was that he was not scared of all the visitors he had yesterday in the hospital  or from the nursing services. So far today seems pretty good and will keep you all updated later on again today...
Roi & Michelle