You need to get some rest and take a day for Kathy. you need 2 listen 2 this wise old Lady.
I went back to bed aunt judy! Lol. So its almost noon. Gonna get us dressed n our things together n head to the rehab. Nicks been askin if we can "go to dinner" so we'll stop in a diner on the way. Ha, i told nick we will be on the move 2day w/danny, walkin n what not.
3pm. We are at the Queen City Diner. Shouldnt be splurging but ordered steak and ham 4 nick. I let him sleep on the way to allentown and now he is whiney and crabby. Danny would say ignore the behavior. Well its pretty hard but im trying hunny.
Facebook on January 15 at 3:00pm
Something that bothered me a lot during the time Danny was in the hospital, was that Nick was really put onto the back burner in a way. I had little time to spend with him with all my running back and forth to and from the hospital. I did make sure his homework was done and checked it. Shannon usually saw to it that he did the work right after school since I often didn't return home until 8pm, and I appreciated that. Ever since Danny started to work with him on things the previous year, Nick's school work, as well as social behavior improved drastically, and I didn't want to jeopardize that. I knew also though that Danny wouldn't like it if he thought Nick was being in a sense neglected. My friends on the support site, the rehab staff, as well as things I read, assured me that children are resilient and would weather this fine, but I also felt I needed to focus more on him. I tried best I could. He had been asking for us to "go out to eat", like in a real restaurant, so Saturday on the way to the rehab we did. He was overtired however, and quite crabby. He would be more tired by the end of our visit.
Danny was even more active than before, and we took turns pushing him back and forth through the unit. They had removed the seatbelt, and he would keep jumping up out of the chair and walking without warning every few minutes. He would go to the doors, which were locked, and push on them, and ask us to open them and let him out. He held my cell phone like a remote and aimed it at the key-in code pad, trying to open the doors. Sometimes he'd bang on the doors in anger. He begged me to take him to the car so we could leave. He became very emotional, crying at times, but also began to smile alot too. The staff was absolutely charmed by his smile, always commenting on it. We did laps for hours. He was always moving...riding, walking, standing. He was allowed to walk somewhat alone now as long as he was in view of a staff member. He opened closet doors and went into them and opened hampers to look inside. He touched the computers and things the nurses had on their station. He rooted through things in his room and was into everything. It was tiring...I could only imagine how tired he was making himSELF! He would not stay still, even for his feedings, which they were now dumping into the tube all at once. The nurses and I would run alongside him in the hall, one of us steadying the tube, the other trying to pour the formula in! He was constantly saying "I'm sorry mam" and "I don't mean to be this way". He would apologize profusely, sometimes crying. He wasn't allowed food of course, nor drink, and he asked a million times a day for a drink. It was heart breaking to keep telling him he couldn't have anything. Especially when he would say, "I'm so thirsty...just a little sip of water....PLEASE." He had a sense of humor too and could be so funny. We were walking in the cafeteria, and someone had left chocolate cake on a table. Before I could stop him he grabbed it, but instead of popping it into his mouth as I'd expected, he tossed it across the room at Nick!! When Deanne and I were walking in the hall behind him, he pulled down the back of his pants exposing his butt and said he was going to walk past the nurses desk that way. He took off walking fast and we had to run up behind him and fix his drawers!
That night Harold had to distract him so we could get out the doors to leave. When we crossed the street below we looked up and Danny was waving from the cafeteria window. I could see he was crying and Harold patting his back...
R visit was great! No more seatbelt n allowed 2 walk w/someone watching from nearby. He was real emotional 2day, crying a tad but also spontaneously smiling. Nick n he had a nice time. He's still up,down,walking,sitting,standing non-stop. We gave his bolus feed striding the hall side by side lol! He said he loved us be4 we left n waved from the window when we were outside. 2mrrw gettin there early 2 spend the day :-)
Facebook on January 15 at 8:41pm