June 10  Monday  Colin wakes me at 6 am saying he is chilly. I turn off the fans, cover him with a light blanket and go back to bed. I am waking up at what I thought was almost 7. Colin calls me, I get up. I hear my husband exclaim that it is 8. I am way off! I quickly go in to check Colin and he is wet.  His muscle spasms always cause him to be on his side by morning. This morning he was on the catheter tube. With nowhere else to go, it comes out of his stoma. I get him his meds then change the bedding, wash him off. By now he is awake so I make coffee, get dressed. After coffee is his BMP, then ROM. He is out of bed by 11, I make him lunch. He has a friend come by to visit so I clean the kitchen, gather recycling, empty trash and FINALLY post an ad for care givers. It takes me awhile, I am not sure how to word it. Now we wait to see if anyone will respond. I go back to work in about 2 moths. We are running out of time, again.

June 11 Tuesday  He is awake when I give him 7 am meds.  We have coffee, listen to a podcast. I zap his hands, wrists and triceps while I do his legs ROM. Zap his abdomen and thighs/calves while I work on his hands. We finish by 10:30. He is in the chair by 11. I make him lunch, wash him up and we get ready to head to town. His OT appointment is at 2:30. We get there a little early and hang out waiting. Once in the gym his therapist brings some equipment. She fits him with a bent spoon, a plate that has a guard and he feeds himself some yogurt. He also picks up a couple small blocks. He is stronger on his left still, but was able to do it with both. Not bad! Then PT.  She stretches his arms, gets him on the mat table and he balances himself for about 5 minutes, twice. All in all he did well. Unfortunate it is only once each week and not as rigorous as the hospital, but at least they can help us move in a good direction.  Following PT we head home. I make dinner we all relax. I look over the applicants. 5 so far. I send out a response asking when they can come up to the house. I order a few ADL supplies, cups, plate guards, straws. He has a visitor so my husband and I go for a quick walk. His friend leaves at 9.  He is in bed by 9:30, sleeping by 10:30.

June 12  Wednesday  Again, he is up by 7, having coffee by 7:30. We take our time with his bath/BMP. We need to start thinking about the shower, it will be done soon. How will we do that? I guess I need a long brush, maybe a raincoat?  And what about the toilet? We have never done his BMP there. I think I will need to get a douchette or something similar.

We head to town after lunch. Neurology appointment is at 2:30 but he wants a shave first. We get him shaved, run by the bank, and make it to his appointment by 2:30. He has his muscles stimulated to check for activity. She sticks a needle into his muscle and zaps it looking for a response.  He has C7 level, some triceps. She tells us to keep doing what we are doing. It takes a long time, many years. He is pleased until she comes in with a B12 shot. After he traumatizes himself over a little shot wego to the grocery store.  We head home, I make dinner.  We chill for the evening, I get a couple more replies for a HCG and think about out how to reply.  He is falling asleep by 9:30 so I get him in bed. He is sleeping by 10.

June 13 Thursday  He is awake early again. This is the new norm. We have coffee, do EMS and ROM, get him up. After lunch we go outside for some vitamin D production. After about an hour we head in to do some PT. The gym itself will make his PT at home so much easier. My knees, hips and lower back ache every time I pull out the stander, set it up, get him in, move his legs for an hour. Put it all away, get out the mat table, get him on, stretch his back, he balances for 10 minutes, stretch his arms, put weights on, exercises, get him off, put mat table away. Now it is time to start dinner. He has a friend coming to stay the night. I make sure dinner is ready when she arrives. My husband is out with friends. Once dinner is finished I leave them to visit, go online and look at furniture, gym equipment, computers and reply to applicants. So much to deal with.

By 10:30 I am tired. Colin is still visiting, listening to music and chatting. I go in and get him in bed, changes, catheters switched, boots on and meds given with so much discretion even he was impressed.  I left her to give him his sleeping meds and turn off the TV. She is a competent young woman so I had no worries. I did wake in the middle of the night, covered him with a blanket, adjusted him. Otherwise they slept till 8:30. I was actually able to make some calls (the primary physician about his IVC filter and a letter I need for an insurance audit) as well as update the blog! I felt so productive. His friend hung out and had coffee with us until 10. We did his BMP, ROM then got him up. We went outside but didn’t last long in the heat.  Once inside he went on the mat table. He had another visiting friend so we had to finish up in time for me to make an exit. I was able to hang out with my husband, go for a walk before his friend left.  He was falling asleep again by 9:30 so I got him in bed. He slept while I got him ready, woke for his meds, then fell back to sleep.

June 14  Friday  We all oversleep. Colin calls me, my husband wakes and says it is after 8. We are now behind on his meds. I make coffee, get Colin his meds, turn on his music, help my husband make lunch. We do his BMP, zap him while I do ROM. We have lunch, hide in the shade outside for a bit, then back in for the stander. His legs are bothering him today so we just take it easy. He stands for 35 minutes then the mat table. My husband is going by his parents to bring home more enchiladas so I don’t have to cook. He also bought pulled pork after the blood drive at work so Colin gets to choose his dinner. We stream a movie, Colin has pulled pork. While the movie plays I make interview appointments for next week, make some final decisions about furniture and TV.  Colin is not comfortable again, his legs are burning. By 9:30 he asks to be put in bed, cringing as I move him, slide him in, get him changed and set up. Once I give him his meds, he begins to relax. I do not. I am tired and scared. Who are these strangers coming to our home? How so we protect ourselves? How well will someone take care of Colin? How much time will I need to donate so we have the care he needs? What if nobody works out? What schedule do I make? WTF am I supposed to do now?  My husband and I walk to the mailbox at 10:30. I have had some wine to relax but the questions won’t stop. I wish I had the answers. The uncertainty is overwhelming. Once we are back I have more wine, take a shower and pass out into oblivion until Colin wakes me for a blanket. Then the questions return, the stress keeps me awake.

June 15  Saturday  I get him his meds at 7, start a movie for him then go back to bed. I sleep till 8:15. We have a relaxing morning zapping his upper body while I do ROM on his legs. We talk about going to a movie, but he has friends coming by at some time today. After lunch (he has more pulled pork) we go outside, lasting about an hour.  We return inside, get him on the mat table, stretch his arms and back, practice his balance. Around 6 he has some friends coming over. One brings his father, whom Colin has know since he was in kindergarten, and has also suffered a SCI.  A diving accident, same level as Colin. This man can now make a fist, walks with a definite limp and has other limitations. He is not, however, wheelchair bound.  My husband and I hang out together while Colin has visitors. We have wine and some snacks, sitting outside under the new carport. His friends visit for about 90 minutes. My husband and I listen to the new Queen’s of the Stone Age and chat. We go in and make dinner, leftover enchiladas. So nice not to cook. We stream a movie, rest and Colin is in bed by 10:30. Father’s Day tomorrow and a BBQ in town.  We rest well, I cover him around 3:30 am then sleep till 7:30.