4 Months

It has been 4 months since Porter's accident on April 26th. I apologize for not having posted in about a month. I'm sorry I haven't written down as faithfully what we've been doing and feeling. I regret it. It has been a rollercoaster, to say the least. Someone told us that the first 6 months after you leave the rehab hospital are rough.  So far, they are correct. I feel bad that this blog is in my voice, because I know the last few weeks have been VERY different depending from who's perspective you're hearing it. In the hospital and rehab facility, mine and Porter's lives were basically the same. We did everything together. Now, we are living very different lives. Since this is a blog about Porter's spinal cord injury and recovery, I feel as though I should give you all the details about him, and his journey. But, what I know and experience and feel about it, is my journey from my perspective. And while it would be fun and way more interesting to hear about it through Porter's view, that ain't happenin'. So you're stuck with me.  I will try to recount, for your sake and more importantly, my sake, what our world has been like since the last time I posted. 

As we gathered all of our stuff (which was ridiculous amounts) to leave the Neilsen Rehab hospital on July 23,  I felt such a peace and reverence in our room. A lot happened in there. A lot was felt. A lot was learned. I stood there for a minute, taking it all in. I still can't believe it. I haven't quite wrapped my brain around our reality. I don't know what's ahead. I am amazed at how far we have come. I am thrilled at Porter's progress. I am hopeful for the future. I am scared to death. I don't know if I'm strong enough. I know we are not alone. I thank God for the blessings that are ours.  

I closed the door behind me and we all got on the elevator. When the doors opened on the first floor we heard clapping and were met with nurses, aides, therapists, valets, doctors, staff members and friends lining the way to the front door. They were cheering for Porter and congratulating him for graduating from rehab. He was giving out fist bumps and hugs as we made our way out the doors. I was a mess. Tears and snot galore. It was a bittersweet moment. They were our family there. We will miss them. 

It would have been more picture perfect if we could have gotten in our car and driven away, but we were having some trouble getting Porter situated and the charge nurse came running out with a bunch of paperwork I had forgotten to sign. Heaven forbid they thought maybe I was kidnapping my own son. But, we got everything and everyone squared away and we were off. It was Porter's first car ride in the new Orange Dream Machine (is what they call it). It was comfortable and just right for Porter. We made a quick stop at Chick Fil A in Centerville and then made our way to Pocatello. It felt VERY strange driving up our street. We were welcomed with posters and balloons and a couple of Porter's friends. It was reassuring watching Porter get into the house, raise himself in the lift to the next level and explore in his chair. I was glad it seemed so easy to get around. His friends were happy to see him and they asked all sorts of questions. Porter said it felt good to be home. 

We unloaded the cars and relaxed for a minute. It was Phoebe's birthday, so we decided to go on our first adventure of eating out together as a family with Porter. Phoebe chose Texas Roadhouse, which didn't upset me. I have been craving it. The whole evening went way better than I had anticipated. We didn't have any problems really. About halfway through dinner the couple in the booth next to us leaned around with worried looks on their faces and said, "Did you guys know there is a 'kick me' sign on the back of his wheelchair?" I think it surprised them when I laughed and said, "Ya, his friends put it there." They didn't see the humor in that, which is valid, because that's usually a mean thing. I told Porter we should probably take it off. He disagreed. It was a delicious dinner and fun birthday celebration. Phoebe was a good sport all day as we focused on Porter and not her so much. It was so great to have her with us and I loved spending time with her. I have missed her this summer.

Saturday was a whirlwind of cleaning and getting our house ready for people to come over the next day. Hyrum was going to be speaking in church since he was beginning his missionary service the following Wednesday. We anticipated having quite a house full because my entire family was in town for a family reunion that began the next day. Porter had people in and out all day coming to see him and say hi. We had our work cut out for us in the house because it had started to be remodeled to make it functional for Porter. All of the furniture had been taken to the garage and the carpet had been ripped out so our whole main living area was just a cement floor. At one point in the day, we considered asking a friend to have it at their house, but we decided it would be fine to have it at our house. We threw a big rug down on the cement, brought back in some couches and called it good. Everyone was soooo helpful with the food, leaving me practically without anything to do. I wasn't about to complain.

Sunday was our first time back to church. Porter was a little anxious about seeing everyone and having everyone come up and ask him all the same questions. He really likes to talk to people and doesn't mind answering their questions, he was just worrying about getting bombarded. I was anxious because I didn't want the focus to be solely on Porter, when it was supposed to be about Hyrum. I wanted Hyrum to get the attention he deserved and to feel it was a special day for him. He did such a good job on his talk. He was sincere and honest and I loved the spirit that was in that meeting. I think Hyrum was well supported and recognized and I feel like Porter was grateful for the interactions he had. So yay. We had a wonderful gathering of family and friends and felt the love and support of so many as we welcomed Porter home and as we celebrated Hyrum's upcoming mission. He is going to do great things. 

As if we hadn't done enough in the previous 2 days, we decided to pack up and go to the cabin on Sunday evening. My family was having their family reunion that I wanted to be a part of, even if for a moment. My cute dad had built ramps and made sure everything was accessible for Porter in the cabin. We pulled in about 11:00 pm. It was a little more work than I anticipated with the amount of space in our bedroom and not having some of the equipment we're used to using. BUT, we made it work. We had an awesome time being with the family and going to the lake and exploring West Yellowstone through new eyes. With each new situation or place we'd go, we had to improvise and create ways to get to where we wanted to be. Porter is always up for an adventure and patient as we figure it out. 

One unfortunate thing happened while we were there - Porter got his first UTI (urinary tract infection). We have been told that this is extremely common if you are straight cathing, which we are, because it's easy to get bacteria where it shouldn't be. It's a little tricky to diagnose with an injury like Porter's because they don't feel the normal symptoms associated with it. The only way to know is: if their spasticity increases, if they are leaking, if their urine is cloudy or if they have a fever, chills, or just don't feel good. Porter had a few of these symptoms so we started to make him drink REAL cranberry juice which seemed to help him. 

We headed back to Pocatello on Tuesday afternoon so we could be home in time for Hyrum's setting apart. He was so excited and ready for this day. He put on his new suit and we went. It was one of the most spiritual experiences in my life. The blessing that President Campbell gave Hyrum to set him apart as a missionary was powerful and beautiful and so very personal. I could tangibly feel the spirit in the room. The love that our Heavenly Father has for all of us was obvious in that moment.  Through Hyrum's blessing, I was recognized and received guidance and Porter was acknowledged and strengthened. It filled me and reminded me of the power that can be ours if we will let God prevail in our lives. We drove up to the temple after and took some beautiful pictures by the temple. The sun was setting and it was a still, peaceful night. There was something special between Hyrum and Porter that evening. I felt them connect. We got a picture of them and I love it. I am loving having this time with Hyrum in our home doing the MTC and what's happening between him and Porter is definitely a blessing that Heavenly Father had foreseen when he assigned his call. They have had lots of time to spend together - just the 2 of them. They have both had to make sacrifices for each other and have had quality talk time and have had to be there for each other - because neither of them have anyone else but me. 

Being back to real life in Pocatello, in a home that doesn't have the necessary functionality we need, proved to be a little more challenging than we had anticipated. Things that used to take us 15 minutes to do in the rehab are taking us 45 minutes. Without the overhead hoyer and accessibility of space and equipment, we find ourselves just trying different methods or options. Porter has rolled well with the punches (no pun intended). One of the most challenging things has been showering. We don't have a shower on the main 2 levels. You have to go up a full flight of stairs to get to a shower. Paul wrote a journal entry about our first experience doing bowel care/shower in our home. 

"I’m not going to lie, caring for Porter is exhausting, especially without a shower on either of the main levels of our home. Our first routine at home took about 3 hours to complete. No one from the outside would ever guess what is requires to care for a quadriplegic. Laura and I are kind of walking around like zombies most of the day. He still requires turning and straight cathing throughout the night, most of which, Laura does. The bowel care/bathing process requires a lot of bending over and lifting which is hard on the back. The routine involves placing the Hoyer harness under Porter’s 170 pound body and legs, using the manual Hoyer lift to get him out of his power chair and into the bowel care chair, taking him down one level in our split level home in the chair lift, removing the Hoyer harness from under his legs, then spending 30-40 minutes doing bowel care, then placing the harness back under his legs and using the chair lift to get back up to the kitchen level, then using the manual Hoyer lift to get him from his bowel care chair into a manual wheelchair we borrowed from the hospital, then hauling him backwards upstairs, step by step with one person pulling and two people pushing, trying to make sure he doesn’t fall out of his chair, then hauling the Hoyer lift upstairs to the top level, which is quite heavy, then hauling the shower chair upstairs, then using the Hoyer lift to get him back into the shower chair, then removing the harness from underneath his body, then wheeling him into the boy’s bathroom upstairs and spending about 20 minutes trying to figure out how to hook up the chair shower attachment to get him to slide over the tracks into the tub, tipping him back to get his feet over the edge of the tub, unhooking the attachment, then taking off the foot rests because they don’t fit in the tub, then Laura and I showering him and scrubbing him off with a handheld shower head, and trying not to get water all over the floor, then hooking the attachment back onto the shower chair, tipping him back, sliding him out of the tub, unhooking the attachment, placing the foot rests back onto the shower chair and lifting his feet up onto them, drying him off while trying to keep him warm, putting the Hoyer harness back underneath his wet body and using the Hoyer lift to get him back into the manual wheelchair, then 3 people carefully lowering him down each step to get to the main level, then using the Hoyer lift to get him out of his manual wheelchair and onto the bed, removing the harness from under his legs and body, then lifting and turning his body to get him into a fresh diaper and clean clothes, cleaning out his ears with q-tips and applying cream, lotion to his face and body, applying deodorant, and straight cathing his bladder somewhere in the middle of this process, and then placing his harness back under his body and using the Hoyer lift to get him back into his power wheelchair, then removing the harness from under his body and pushing and squaring up his butt and hips in his power chair, which usually takes several tries, and there he remains until bedtime which is an entirely different routine."

All the work it takes to care for Porter is coupled with the normal day to day life obligations. I have only cooked a handful of meals in the last 4 months and now I am making 3-5 meals every single day. We are living in complete disarray. We are using the garage, my room and Porter's room as storage units for everything we had to take out of the living areas. It's disorganized and causes me some stress because I can't put any of it away right now. I need to get used to living in chaos for a little while.We have an awesome friend, Kevin Allen, that is spending whatever free time he has over here fixing up our house and he is awesome. He knows people and is sharing our journey with them and in return, they are helping, donating and providing a lot of time, energy, and supplies that are making the remodel much more doable for us. He is getting it done for Porter. So nice. It is looking awesome and we are thrilled that we will have an adapted space for Porter. 

It's been good to be home for Porter, to be with his friends and go on some outings with them, and be part of a social world again. He has missed it so much. He is a social guy. I have been proud of Porter as he is wanting things to be normal with his friends, but realizing it's going to look a little different. I am grateful for his friends that have reached out and continued to invite him and include him. Such great kids. For me, on the other hand, I am having a hard time not coming back to my normal life. I want to go and do and be productive, but can't seem to get much accomplished. AND I find myself just wandering around and not able to start anything because I keep getting pulled away. My friends call and I kinda feel like I can't leave and in a way don't want to leave. I feel guarded right now with my emotions and feel as if I might break down at any time. I felt so strong and peaceful and happy in the rehab. Probably because I didn't have much on my plate - but now that we are home and there are lots of other people in my world - I feel very needed and for some reason, I don't have a lot to give right now. I want to be there for everyone and fulfill the needs of each of my children but feel like I'm falling short. (Blah blah blah) Let's move on.

We moved to Utah on Sunday, Aug 1st. We have been living in my brother Jon's home in Cottonwood Heights. My talented brother in law, Doug Christensen, built us some ramps that allow Porter to get into the house perfectly. It has been a great living situation with one level living and we have been very happy with it. That being said, there were a few moments of torture before we had beds and kitchen supplies. But, once again, earthly angels showed up with all the things we needed and helped us tremendously. 

Porter is going to therapy at Neuroworx in Sandy, Utah. It is an outpatient facility and he does physical therapy and occupational therapy there every day. The therapists are awesome and we are feeling really good about the help we are receiving there. We spend most of the morning there and we anticipate that we will do that for quite a few months. We hope to continue to build up his strength and capabilities. We are confident he'll become more confident and independent and already see that happening. It's hard to be away from home and our family, but we know that these first months are critical and we want to offer Porter the best case scenario. We want him to have opportunities and triumphs. He is working hard and never seems to get discouraged. He is healthy and we are so grateful for that. 

There is so much in my heart. I know this isn't much, but I wanted to update everyone on where we are and what we're doing. We continue to come and go from Pocatello. Right now we are home in Idaho because our awesome friends planned an amazing benefit concert for Porter that is happening on Monday in Pocatello at the Portneuf Ampitheatre. If you are reading this - you should come and bring your friends and family. It's going to be very fun. Peter Breinholt is one of Paul's great friends from his childhood and they have remained friends throughout the years. He is a fabulous musician and plays some impressive music. Jon Schmidt, from Piano Guys, is also coming. He and Paul were also friends throughout high school. We are so grateful they are taking the time to come up and share their evening with us. Porter is way excited to go. It's supposed to be good weather and there is going to be yummy food to buy. Come make a memory with us. We would love to see everyone there. Doors open at 6:00pm and the concert starts at 7:00 PM. Thank you to everyone that is making this event happen. We can't wait.

I will try and be better about giving updates on Porter. He is keeping us all afloat with his quick wit and consistent positivity. We continue to feel your prayers and faith and love. Thank you for reaching out and checking in and encouraging us as we continue to find the rhythm of our new life which is still in tuning mode. (My mom's words)