The Power of Porter

A weeks worth.  You better get a snack... All of the days bleed together and sometimes I can't remember one day from another. It's a touch groundhogish almost (Movie with Bill Murray). I should maybe do what he does and try different tactics to see what works best and makes Porter the happiest and produces the best results. Watching for lessons to be learned each day and using them to my benefit. Now that I'm thinking about it....maybe I'll do that. However, I have written down a few notes about each day.   Monday started out fairly typical - got Porter up and going. His blood pressure tends to always be a little low in the morning, so we were taking it slow. Dan and Jade got him downstairs in the stand up machine. He was super mellow. He was feeling very low energy and dizzy and light-headed. They pushed and encouraged him until they could tell he wasn't really up for it. I brought him back to the room and let him sleep for a bit.  My cute sister, Jenny, brought so

The skies were gray and cloudy when I awoke on Sunday. I know Utah has been needing some rain, so this was a welcome sight. I had decided to fast - there were a lot of things on my mind, but I also wanted to do a little extra to help Utah get some rain. I have been thinking a lot about faith and the will of God. This whole situation with Porter is such a weird place to be in - wanting to have the faith for him to walk and even be healed completely, but then to simultaneously be willing to accept God's will for us. I can't seem to figure out which way to lean more. Can you do both? And if you accept God's will which may be that he doesn't walk, have I not exercised enough faith?? or is my faith not sufficient? But I know there are hundreds, maybe even thousands of people praying for Porter and isn't all that faith combined enough? And if it is God's will that he doesn't walk, do I stop praying for and having faith that he can and will? All of these thoughts r

Porter's teenager sleep style is kicking in. He is sleepy sleepy in the mornings, so 9:00 therapy comes early. It doesn't help that we are up pretty late taking care of business and showering him and stuff. He moves kinda slow waking up, but is always willing. Wednesday morning he wasn't feeling too hot though. He had a bad headache and his ears were ringing and his blood pressure was very low. Thomas was patient with him as we got him up and going. He did some wrist exercises with him and then right after OT we went with Dan and Jade over to a cool machine that is a bike. They hooked pads up to the different muscle groups in Porter's legs which were connected to electrodes. Then they use electric stimulation to his muscles and he can pedal. It's as though his muscles are receiving messages to flex and work. This type of therapy keeps the muscles moving and toned and it even made his heart pound a bit. It's really good for them. I asked Porter how it felt and he

Tuesday was another great day!  Started with awesome PT/OT. In physical therapy, they had Porter try out a new power assisted wheelchair. It's kind of like an E-bike where you do what you can and then it helps you keep going. They put these cool grippy gloves on him that helped. He picked it up really quickly and made a lap around the whole room. I love how they change things up everyday to give him new experiences and are able to see what he can do.  They also have him learning to move himself to relieve the pressure off his bum. They like them to do this every 20 min or so when they are in their wheelchairs. So they are teaching him different ways to do this. In occupational therapy, Thomas, his therapist, wheeled him up to a table with 2 spoons on it. I could see Porter look at that table and back up at me like, "Um, I can't use my hands." He didn't say that, but that's the feeling I got. For the next 45 minutes, Thomas worked with Porter until he could pic

I am so grateful I have been able to be here with Porter. I am thankful that so many people are filling in for me where I can't be and what I can't do right now. I feel spoiled with the food and kindnesses of so many that are helping me here at the hospital. It's been so nice to not think about food and laundry. I feel so so grateful. I am learning so much every day about things I knew nothing about. They are so good here to explain everything and to give Porter knowledge about what's going on. They also give him choices. They always ask him what he wants to do and what his goals are for the day. They make him feel like he is in charge of his therapy. They expect him to do everything he can do and really encourage him to do things he hasn't done before. They are amazing. For example, the occupational therapist, taught Porter how to put on his own shirt. But not like - ok Porter put your shirt on. He walked him through it. He showed him different ways to move his han