New Year’s Day. Very low keyed. Colin, his friend, his brother..everyone slept till 10:30. We made a big brunch and everyone relaxed.

Colin was up by 3:30 and they all hung out visiting and asking for food. It always amazes me how much they consume when all together. The mass of dishes never ends. The refrigerator is full one moment, half empty the next.  It is still nice to have everyone here.

Colin’s room was the only Christmas decoration, a tree with lights. It will come down tomorrow and the tree will be planted somewhere ion the yard.

The 2nd, expecting another interviewee. The last 4 never showed up, never informed us in any way they were not going to come out.  Just stopped communicating. I have a very long no hire list.

L showed up and Colin was pleased with her. She starts tomorrow, the third.  D is still off till the 6th. Colin liked L. She is younger, in school and strong enough to handle him well. Ian and Steffie met her also, then they took off for Sacramento.  Colin and I had the house to ourselves and we did the stander, went outside enjoyed the day.

The evening Colin’s pain was getting worse. It went to 10/10, sent him into a panic that took me a good half hour to calm him down. I gave him some extra lyrica, which helped a little after about an hour.  By 8:30 he was exhausted.

The third L started her training. I only had a couple days to show her before I go back to work. She will come on Sundays, Tues/Thursdays so we can work around her school schedule.  She trained until about 4, then went home. She was due on Sunday next.

Saturday was another day of pain and discomfort. I did get him into the shower, which helped him feel better. I realize I have not posted pics in  a while so I am going to make up for it now.

Him in his room, his Christmas tree and a short vid demanding a pickle  The December snow, him sleeping with his brother and then with Sassy.  The gym.

We went down to a movie.  Fresno never has disabled parking for people in chairs. Everyone I see parks and walks away. We need the van accessible spots but they are always full. We have to park in the very back, and even taking up 2 spots, people always park so close we cannot get him in without moving the van. Nobody reads the sign that says keep a clearance.

We had a nice dinner, then headed home. He has a little too much beer so we had to pull over on the way. Good thing I have a bunch of plastic bags in his backpack.

I got him home, let him rest and settle his stomach. I did not give him any meds until he felt better, around 11:30. He slept till 9:30 the next morning. L has already arrived and we did more training. She learned fast. Colin likes her. She seems to enjoy the new job.

Sunday was training, laundry and I got him in the stander. L stayed a full shift til 7 then we relaxed. D was back on for tomorrow, Colin has therapy and we need to contact his neurologist for pain.

His pain is becoming unmanageable.  The meds are not helping the worse times. He is in agony when he wakes, feels a bit better for a time, then back to agony by afternoon. His panic attacks have been increasing as he cannot relax when the pain gets so bad. Monday was no exception. He had a panic attack in the shower. D got me and it took about 20 minutes to calm him down. He made it down to therapy, then came home in great discomfort. He canceled plans he had made to hang out. The pain causes him to feel drowsy. He is always on the verge of falling asleep, but never really does. He hates that feeling.

And as always, there is nothing I can do to help. No meds, no music, no movie, no distraction. All I can offer is my presence and a tiny sliver of comfort. Every evening is turning into a pain management session.

Tuesday, another training day. She did well. Did almost everything. I just monitored and guided. I tried to contact doctors about sleeping meds, pain meds, a freight company about a delivery we were expecting, tree service to get the trees trimmed. Another “day off” and I am not getting anything done I was planning to do during my 3 week break. In fact, I am now further behind.

I leave them and go to run errands in town, Am back by dinner time. Tomorrow I am on duty, D had something he needed to do.  L would be back on Thursday.

We managed through the day, finally made appointments. Today we tried a local PT place that his neurologist wanted us to try. It was very bad. They had no set up for a quadriplegic, the therapist did not know how to move him, or even what he could do. What a waste of $150. We went to his primary right after that, got him some different sleeping meds.  Hopefully this will help him sleep through the night, I think the last time was Jan 1.

Thursday the 9th I went to Costco then picked up his new meds. His next neurologist appointment is the 16th. We expect medication changes then as well. The pain is not getting better. He was sleeping when I got home and did so until dinner was ready.

The rest of the weekend D was supposed to be on duty so I could finally get something done before going back to work. He asked to be off to do a project. So I was working until Sunday.

We managed to have a good weekend. We worked around the pain, got him in the stander  in the shower. We added some hand exercises to combat the stiffness.

Sunday morning I was looking forward to being productive. By 9 am I had a list made, a plan of action. Then L texted she was ill. My list and plans were voided. My 3 week vacation was over.

We had a good day. I was not prepared to return to work. We went to ed late, he woke in the middle of the night wet. I changed him, settled him down, then went back to bed. I was up again at 5 and then 7. Back into the grind.

His pain for the week was not good. The therapist sent him home due to the intense pain. He canceled plans and went home. Depression is setting in. He cannot do therapy effectively, he is feeling weaker. He wants to make plans, then is afraid his pain will prevent him from enjoying the time. He sees the doctor in a few days but we still must  get through each day. It is so very hard to watch him struggle every day, sometimes through every moment,

Thursday finally came. She gave him a new med, did not change the old dosages. This new med cannot be taken with his new sleeping med. So we are back to trying whatever we can to help him sleep.

Sassy cannot sleep with him any more, she hogs the beds and wakes him up. We have relaxation sounds, rain, waves, waterfalls, Buddah box and anything else on the itouch to play though the surround sound. Anything to help him relax and sleep.Sometimes it works. Mostly it doesn’t.

By the next week he is doing a little better. I have changed the scheduling of his pain meds so he has a constant dosage level. Now he takes meds at 7 am, 10 am, noon, 4 pm 5 pm and 10 pm. Hopefully we can get it under control.

The 23rd he had a Facetime with his brother, resulting in their usual antics from when they were very small. They have their own language and laugh at me because I don’t know it. I prefer to ignore them.

His father came to visit the last weekend of January. I was so excited. My husband and I could finally have a night to ourselves while Colin and his dad went out. We had a nice dinner, poured some wine. Wrapped up in our snuggle blankets, PJ’s on at 8. It was great. Till 8:10. Colin called. The van would not start. It was between 2 cars. He could not get into it. Fuck me. There is NEVER disabled parking for the wheelchair bound in Fresno.

Get dressed, load the manual chair into the Subaru. Call D. D is closer so he can make sure Colin is warm enough while we head down to town. My only concern is he is sitting on the cushion we need for the manual chair. What a bummer. So much for an awesome Friday night. Halfway down they let us know D got it started. We praise him and turn around. We get back in our PJ’s, pour more wine and pretend the past 90 minutes did not happen. Saturday we had plans with friends, had a wonderful evening out. They are few and far between.

Colin bought tickets to a show in LA and then another show in SF. Appleseed Cast in mid March with his brother. Tool in late March in SF. We are hoping to get his pain managed better before then.

The van has issues. D came on Tuesday, cleaned every fuse contact, then it started. It has been running ever since just fine.

The final week of January the pain improved a bit. Patterns are emerging but the levels fluctuate daily. He has decided he will not let it interfere with therapy. He has been doing more mat table work at home and the stander plus electrodes more often. I trained L on the electrodes and she has no problem getting them on.

Hopefully February will have more good days than bad. January felt too much like the hospital, waiting for something good to happen. Being unproductive, unable to help him, getting no breaks, missing my mom and wanting to spend more time with my husband got the better of me. I was not in a good place. I am trying to work on that. Look for something good even when it is all going to shit.