June 5  Wednesday   I have him up and dressed by 10. We are meeting a friend for sushi, then plan on dealing with Costco. Colin does not feel well, leg pains. He does have more normal sensations in his palms now. He mentioned he has been able to tell when his palm is on skin or a blanket or his hip bone. He could not before. Progress is so slow. We are waiting for our rolls when I realize my husband has the redemption certificate and our executive membership is due. No Costco today then. We finish lunch then go to the grocery store. We head home, come in from the heat. We get on the mat table, do some stretches and ROM. His legs are bothering him again. I zap his triceps to divert his attention. He has another friend come by for a couple of hours. After his friend leaves we have a light dinner. My husband had dinner with his family so I didn’t have to cook. After dinner I massage his legs, we stream a movie and relax.  We talk about FES. I research equipment and even though the concept has been around since the late 60’s, research has proven how awesome it is for ALL kinds of disabilities and conditions, the only home system is sold by 1 company, in the UK, for $30,000.  WTF. We can spend billions so men can have hair and erections  while women can get big boobs and no wrinkles but nothing to improve almost all health aspects for mobility limited people. Nobody even talks about this, nobody trains for it, only specialized centers have this. Insurance covers conventional old school PT which means we have to advance ourselves. We will improvise.

I get him in bed, he examines his feet and legs, pats his thighs. He sighs heavily looking disappointed he is not further along. I remind him it has not even been a year yet. I give him his meds, help him relax. I am in bed by 11 then up again around midnight to ease his moaning. It is about another 40 minutes before he finally drifts off.

June 6  Thursday   He sleeps in a little. I get him coffee by 9, we finish with his BMP, ROM and have him in the chair by 11:30. In the stander for an hour after lunch then the mat table for stretches and balance. It is far too hot to go outside so he gets on the computer while I clean the kitchen. His friend comes by and they visit while I research more FES ideas. My husband is going by his mom’s and bringing home enchiladas for dinner. I don’t have to cook!  I find an exercise bike that he will be secure in and with a couple more EMS simulators we can make our own FES set up for about $500, albeit not as streamlined and professional looking. It will do the job. My husband gets home with dinner, we all eat. Colin is ready for bed around 9:30, his legs doing a bit better than previous nights. We get him comfortable, administer his meds and help him relax so he can sleep. There are fans going but it is still warm. He cannot sweat. It takes him awhile to feel comfortable enough to sleep.

June 7  Friday  I am up by 7 to give his meds. I manage to get a few things done before he is ready for coffee by 8:30. The heat has arrived and there will be no AC until his area is finished. After coffee I do ROM, zap his abdominal muscles. He is out of bed by 11, we head to town by noon. I pick up some knee high TED hose, first aide tape and wipes at the drug store. The heat is over bearing. We go have lunch. Following that we consume far too much ice cream. Then Costco. What a fucking nightmare. Why do working people descend on the warehouse at 2:30 on a Friday?  We finish and manage to make it through the check out by 3:30.  My husband greets us there to help load the van. He just appears! It’s so awesome. Colin and I head home, my husband returns inside to the near empty warehouse to look for shorts.

We get home, I get Colin inside, give him meds and get him cool. I unload the van, put everything away and get dinner ready. My husband gets home and asks if I have gotten any texts or calls. I tell him no, ask him why. He tells me the news about the shootings in Santa Monica and at the SMC campus.  Ian attends SMC. He lives a block away from the school. My heart skips 5 beats. My stress level skyrockets. I can feel the tension everywhere. I listen to the phone messages. There is 2 from the school, all automated giving information. Nothing from Ian. We all text him asking him to contact us. We hear nothing. After dinner Colin is resting, streaming a show. My husband and I go for a quick walk. Once we are back Colin wants some snacks so I get him nuts and candy. Following another show I get him in bed, help his examine his appendages then relax. I wash his hair to cool him off then get him settled for bed. He is drifting off by 10:30. Ian finally texts around 11pm. His phone had been dead, he is fine. I don’t understand why he couldn’t borrow someone’s to send a quick message. Damn kids.

June 8  Saturday  He has to get up early. I wash him following his BMP, go through a quick ROM, get him dressed and in the chair by 11. His friend is here by 11:15. I feed Colin lunch, pack up his bag and send them off. He is going to a BD gathering in town. My husband and I enjoy some time alone, get dressed and head to town. We have his parents  housewarming party today. Outside. It is 111 degrees. It is beyond hot. We stop by our friends place on the way, go pick up a gift and head for the heat fest. They have a table set up under the patio cover and misters. I set my chair under the misters, had my husband make us some Sea Breeze drinks and enjoyed the visit with his family.  I kept in touch with Colin, let him know our schedule. We arrived home about 20 minutes before they did, around 10. Colin is tired, the heat is making him uncomfortable. I get him in bed, strip him down, put a light sheet on him. Two fans, open windows he finally starts to cool off. I get him his meds, help him drift off. I am in bed by 12:30.

June 9  Sunday  Another hot day. Colin cannot sleep in. I am up at 6:30 to close the house. Once I give Colin his 7 am meds he asks me to get him up. I start coffee, close the house up, lower the outside blinds.  After coffee I do ROM while zapping his triceps then I change his catheter. The sterile technique I have to use always seems to upset Colin. He does not like to see the tube coming out of him so I have to place a pillow to block his view. Once it is changed, the stoma cleaned, drain sponge replaced, I get him dressed then in the chair. I make him some lunch, then a brunch for me and my husband. We hide in the house for the day getting on the mat table later in the afternoon. It is too hot for the stander. He streams a documentary while I make dinner. We watch the season 3 finale of GOT. Colin is in bed by 9:30, his legs bothering him again even though we altered his medication.  I massage his feet until they feel better. He begins to relax after his meds are given, drifting off by 10:30, all the fans blasting him with air.

May 29  Wednesday  He is up early, we finish his morning routine by 11. After lunch we go outside then do the stander. We keep looking for his triceps uncertain we had found them at all. We have a good routine in place so days are going with regularity. His throat is healing, although he has to look at the scab closely in the mirror daily. We talk about the transition from bed baths and BMP to showers and bowel movements over the toilet. It will take practice.  He has a visitor who stays for dinner.  After dinner they hang out till his visitor leaves. I have him in bed, meds given, lights out by 10:30.

May 30  Thursday  He is again up early. We finish the hair wash, bath and I have him up by 11. We have lunch then he digests for a bit. I get him on the mat table, we practice balancing, stretch his torso and back. Then he is in the stander for an hour. By now he is tired. We go outside, get some vitamin D made then I vibrate his feet while I make dinner. We have a relaxing evening, stream a show while I continue my tricep/muscle stimulation overall research. I zap his forearms before bed. We are all sleeping by 11.

May 31  Friday. He wakes up feeling tired. We worked hard yesterday, he is feeling it. After his BMP he feels better, begins to perk up  I wash his hair again. We go outside, do some EMS, some Mat work then get him ready. He has his first outing without me today. He is going to dinner (Indian food..mmmmm) with friends. His best friends will be driving him in the van, sans mom. Needless to say I am excited also, I have given my husband instructions to not be too late. He is not. We all a great evening. By the time Colin is home, we have enjoyed the early evening alone, then moved on to mixed drinks and a good dinner. Briefly it was like a year ago. Colin and is friend stayed up till 11, I was in bed by midnight. Colin woke me a few times for adjustments but otherwise the night was uneventful.

June 1  Saturday  I was up by 7:30, had Colin up by 9:45 after a quick ROM. His friend was going to be the caretaker today so my husband and I could go visit some friends and their new baby girl. His friend was there by 10. I left instructions, medications plus plenty of food and drinks and we left at noon. We went to a little Italian restaurant, ordered some gourmet pizza and appetizers, then headed for our fiends place. It was so nice to hang out with them, it had been too long. They had helped me get through the first few months when I lived at the hospital, seldom going home. I have missed them terribly and now they have a new baby. It was a great visit, a wonderful afternoon and evening. We left around 7,  got home at 8. Chilled with Colin till 10:30. All lights out by 11. It was a really nice day.

June 2  Sunday  I woke up too early for meds. I lie awake feeling sad. It is my mom’s BD. I want to call, but I don’t get a chance. Colin is awake early. We do his BMP, a bath then ROM. He is up by noon, we try to go outside but it is too hot. He is in the stander for an hour then we do stretches and balancing on the mat table.  He streams some show with his feet vibrating while my husband and I make dinner. My husband tried roasting a whole chicken, it took longer than he thought, We had most of the meal early watching E9 of  GOT (yes THAT episode…) then they had chicken around 9:30.  I am finding that he is up earlier, we have more to do so I have less time to do much of anything beyond cooking, laundry and basic cleaning chores. Things are accumulating in areas I used to get a moment to clear up. I choose to ignore that and other things that would drive someone with OCD to tears. I have learned to let so much go to get through a day.

I get Colin in bed around 10:30. He still spends time examining his legs and feet. He is settled for bed by 11:30. I take a shower, cry while I miss my mom, get to bed by midnight.

June 3  Monday  This is one of the last weeks we will have no appointments. Next week we begin the regular OT/PT sessions and doctor visits. I get up before 7, make coffee, get Colin his meds. I help my husband get ready, he leaves by 8. I spend 45 minutes on the phone with the State, rescheduling doctor appointments and contacting insurance. I write a letter to SS to let them know of required changes that may affect his SSI. He is ready for coffee before I can post an ad for a care taker.  He has his coffee, we do his ROM,  zap his arms. He is up by 11, I make lunch, get him his meds. He relaxes long enough for me to clean the kitchen. He is in the stander for an hour, then the mat table. His friend arrives by 5 to visit. I get a chance to do some laundry and start dinner. His friend leaves about 8, I use the tuning fork on his legs. He is in bed by 9:30, meds given by 10. Sleeping by 10:30.

June 4  Tuesday.  He is awake by 8:30. While we are having coffee I get a call from the state LTC case worker. She wants to come do another home visit since he has no trach now. She schedules for Thursday. I tell her fine. We finish our morning routine, get him in the chair. We go outside for a little bit but the heat drives us inside. His legs have been bothering him beginning around 3 pm for several days. The nerve pain is so bad, feeling like fire, he whimpers. Today he is crying. We talk about how we can modify his meds to help before we return to the neurologist and come up with a plan. One extra dose at noon. We will see how it goes. We try the stander but his legs make it difficult. We do some stretches and balance on the mat table. By then he is doing worse. I get him back in his chair, elevate his feet, remove the TED hose. Maybe the heat is causing problems.

By 5:45 his 5 pm meds have helped enough for me to start dinner. After dinner the pains get worse again. I massage his legs and feet until he tells me to stop. I cannot give him meds any sooner than 10 so we struggle through the evening until 9:30. I get him in bed, get him his meds and try to help him relax. He cries more. There is nothing I can do except stay with him until he falls asleep.