More than a village

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 said, "It's weird because I can see my legs moving but I can't feel anything." He rode that bike for about 2 miles. It's something they will do about 3 times a week with him. Later in the day, they put some gloves on him that had hooks on the palms and had him do some weights. The cable machine handles hook in the gloves and he can do all sorts of things. He did curls and rows today. As he works and strengthens his muscles, it will allow him to be more self sufficient.

On Thursday he spent quite a bit more time in the power wheelchair. He was able to go a lot straighter and faster. He's getting more agile too and can sit up and hold his head up better. His neck still seems to give him quite a bit of pain, (I mean hello - he had major surgery a few weeks ago) so he has started wearing a soft collar during therapy. I feel like that helps. 

In between therapy sessions, I made Porter stay in his chair because some of his cousins were coming to visit. He wanted to get in bed, but I wanted him to be able to go outside to see them. I think I was making him come out to be with us for selfish reasons. I love everyone to see him and be with him and feel of his strength. I think it helps them. And it helps Porter to feel of their love and support.

In OT, Thomas worked on his hands with him. He put a connect four box in front of him and said, let's play. Porter opened the box, got out the pieces and put it together, with some assistance. Then Thomas taught him how to pick up those checker type pieces and then Thomas would hold his wrist back to help him keep ahold of the piece and Porter would put the piece where he wanted. It was impressive. Jade was bragging about how she and her family have connect four competitions and how she won last summer. Well, the bragging stopped when Porter beat her. He snuck one in on her that she didn't notice. It was hilarious and she was humbled. Thomas has given Porter some homework to do in the room. I see Porter trying to do more and while all of it is very slow coming and frustrating for him, he keeps at it. 

Porter's uncle and cousin came to visit and had made this cool vinyl lettering for his wall. It says, 'The Power of Porter' in beautiful calligraphy. It was fun to eat and visit with them while they put it up. We are needing to make this place a little more homey. We also hung a few pictures and his OG poster from Vegas. I never have been much of a decorator, but the space is becoming our own. Home sweet home.

Friday was a great day. How could it not be, Porter wore my Guns N Roses tshirt. haha. We started off therapy with some Wii tennis. We strapped a controller to Porter's arm with an ace bandage and moved his arm rest. I played one game with him and he wrecked me, so I turned my position over to the other aid. She was good and actually gave Porter a run for his money. They had some good rallies going. Again, it was fun for Porter, but frustrating. He doesn't seem to get discouraged, just frustrated. His body just won't move like he can see and feel it in his head. I can't imagine. I know so many of these things will get better with time and practice. Patience.

The afternoon was filled with visits that began with Paul and Sawyer arriving for the weekend. OHHH it felt good to hug those two. Porter was happy to see them as well. A nice diversion from me for him. Paul jumps right in and wants to know everything. I had them take Porter to therapy while I napped and straightened the room. We spent quite a bit of time visiting with cousins, aunts and uncles and taking turns going up to the room with Porter. He had had a long day and didn't want to sit in his wheelchair and I learned my lesson, so I let him stay in the room. And it all worked out great.

Saturday was more mellow and we only had a couple of therapy sessions. I guess the weekends are like that.  I let Porter sleep in. They did lots of stretching with him and he got a massage. His shoulders have huge knots in them and they are quite painful. He also has some nerve pain that has made him more sensitive to touch. I have to warn him before I touch him so it doesn't send a shock through him. I, of course, forget most of the time and he just winces and flinches. He is so patient with me. We had a fun visit from more cousins outside today and the sun was out. It felt great and did Porter's and my heart good to laugh and talk with them. They were even throwing rocks in the waterfall together. Porter thought it was more fun to throw them at me though. I love that he has so many wonderful people and influences in his life. Everyone has been so concerned and supportive. I don't know if Porter realizes how blessed he is with people. But I sure do. The outpouring of love and support is huge. We have an amazing network of people in our lives, which include all of our new friends, some that we haven't even met yet, that have heard Porter's story from others and are all willing and wanting to do anything for us and we are so grateful. It truly is beautiful. 

Sawyer got Porter playing some games on the ipad. I love that he was thinking of things Porter could do. They watched some Physch  as well. We had some great family time laughing and talking and did another family facetime with all the kids. Emma Doordashed some Crumble cookies to his room, which was so nice. So we sampled all those as well. She also put together a bunch of items that he needs and we got that this weekend too. Lots of things that will make life more comfortable for Porter. His spirits were high throughout the weekend and I saw lots of smiles and laughs out of him. Paul and Sawyer are quite the comedians. Always keeping things funny. It definitely broke up the time for us. So glad we can be together. Hyrum was on a senior sneak get away with some of his friends at Bear Lake, so we missed being with him, but so glad he can do some fun things with his friends for graduation. 

Paul has been working hard - along with lots of our friends who are sooooo nice - to get our house ready in case we decide to sell and move to something more functional for Porter. It's just so crazy with the market right now. We would make some money on our house but then turn around and pay a dumb amount for a house or to build one. We can't quite figure out what to do. We feel like we will know and trust that God has gotten us to this point and he'll help us with that too. We are praying that an ideal situation presents itself. Whether that's a home we can fix to meet our needs or build one the way we need it. There are just so many changes in our life right now, that we really don't want to have to leave our neighborhood we love, where we have so much support and where Porter's friends are and it is familiar to him. So, if anyone has any great ideas or leads - send them our way. 

This was a long one - I thought I might as well just catch up. Thanks for bearing with me. 

Lots of love and hugs for all of you that have joined this journey with us. I know it's going to take more than a village for this one. We continue to be inspired and blessed by our associations with you. 

GOD BLESS YOU ALL!