As most of you know Sunday started out awesome with Joey smiling, laughing, talking ands responding to questions we asked him. Sadly that only lasted about 15 minutes. When I returned home with his breakfast he was back to not talking and looking so distant. Im not complaining though because it was wonderful to have him back with us briefly. Reminds me of how sweet he was before the steroids, vaccine or tumor threw him for a loop and how things could be once we find the culprit that did it and fix it. Really hope to have him enjoying life like that again because I can see the pain and disappointment in his eyes all the time. The day and evening were pretty much the same with him not talking much and sitting in his chair most of the time. We all spent the day cleaning the room he was in and getting it ready for Halloween decorations. That might perk him up a little. There were a few times throughout the afternoon and evening where he showed signs of improvement. He would sometimes answer questions he was asked with one word answers. But at least he answered. He saw Tom Rigatti and said a few words like hello, goodbye and a few other things. In the evening he said a few words to our neighbors Amber Bercik, Carol Heisler Striebich and Paul when they came to see him. They brought him a remote control NYPD police car. He got up and sat on the ottoman for them to get a pic with him and he actually stayed there for a few minutes. A little while later he smelled the Chili the Striebichs brought over and asked like my father would have :Whats that smell. Not that he thought it was bad but because it was food and he was enjoying the smell. Over the past two weeks he hasnt used that sense of smell or at least verbalized it. So I made a bowl of Chili and he ate it all up. Like my father and myself the steroids is really making him love food, no matter what it is. I think I could put snails in front of him and he would eat them. To me that is a good sign that he is senses. When I took him to bed he answered me a few more times and I was ecstatic. Put him into bed, rubbed his hair a little and he fell asleep. He woke a little later when he realized we were down stairs and came down to see us. Took him back to bed and got him to sleep. During the night we had more good moments when he was able to answer us when he was going to the bathroom or if we asked him something. At one point he asked me Dad, can you turn the air(fan) on. Doesnt sound like much but for someone who wasnt talking at all a few days before, thats huge. Although he was restless most of the night he did respond to us. His best moments of sleep seem to be the early hours of the morning. Hes still up there with Mom and Im happy. Hopefully hell be more alert longer today and well have a better morning than yesterday. Im thinking that the longer hes awake his brain gets more tired and he needs to rest it. We will appreciate anything we get with him and see how things go. Last nights dose of steroids was reduced a little to keep on track with the slow wean the docs want us to do over the next few weeks. Hopefully we can get him off them and he comes back to us fully and can really enjoy life. I know his siblings would love to have him responding and playing more with them. Time will tell. Thank you all for the great love and support that you have given all of us and especially Joey during this trying time. Without your support, what we are all going through would be much much more difficult. The way our community, friends, family and a lot of strangers have come together for us has been overwhelming. Well my boy just came down and I have to feed him. So far, so good. Heres another first we havent seen in weeks. He came down and asked if he could change the t.v. channel. He didnt care to touch the remote before even when I gave him a list of his favorite channels. For him to pick it up and know what channel to push is big! He just told me he wants a bagel so I have to go. Thank you all again for being so awesome!!! A real HOLD ON moment!
Posted on: Mon, 22 Sep 2014 12:54:54 +0000
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