In typical Colby fashion here is how our day went.
He slept all night. I had to sleep on the floor next to him but he still slept all night. He only woke up the two times I removed my hand off his stomach. As soon as I put my hand back on him he went right back to sleep. Unheard of for him. He is usually awake for at least two or three hours every time I don't have a night nurse. He didn't have any medication other than blood pressure meds all night. His baclofen, artane and sinemet all were on hold so that the doctor could see how bad his tone is and how bad his posturing is. Let me repeat. I expected him to be awake and very uncomfortable all night not sleep the best he has slept since his stroke.
Then I got up got a shower and started getting things ready to go to the doctors. He watched t.v. and slept off and on. I got the girls ready for Grandma to take Jahnna to school and Riley to go play at Grandmas house. He slept through that. I put him in the car. He slept through it. He slept the entire two hour drive down to Salt Lake. We didn't have to listen to The Spectacular Spiderman or Wow Wow Wubbzy even once the whole drive down. Unheard of. He should have been very uncomfortable and at least crying if not screaming at this point. It had been over twelve hours since his last dose of medication and he normally gets those every six hours.
We got to the doctors office. Said hello to my friend from high school Sara! We love you Sara! Then went into a room, where Colby slept. He was looser than he has ever been before. There was no tightness at all. I was seriously contemplating my sanity at this point. The doctor came in he wouldn't do anything. We even put him on the floor and told him we were leaving. All he did was get his little pouty lip and start crying. No screaming, no posturing, no anger nothing. So not like Colby. John even tried to give him his knife but he wouldn't reach for it.
The doctor told me she believed me that he wasn't normally like this. She also said that if this is truly his baseline (which I know it isn't) then Deep Brain Stimulation won't help him and she doesn't think we need to go forward. She did say though that she would wait for me to send her videos of him at home so that she could look at what he does when he's home. When she said we could go we asked him if he was tricking the doctor. He chuckled and smiled and said "yeah". ARGH is all I can say. The whole point was to see him being spastic and posturing and he didn't do any of it. He is so backward. He never does anything I expect him to. I don't know why I was so surprised by his behavior today. Knowing he is the backward boy I should have expected him to do exactly what he did. But I'm a glutton for punishment I guess.
Then we went to lunch with Uncle Robert. That was fun even though they are awful to go anywhere in public with. John and Robert kept asking Colby if he wanted to drink whiskey and chase women with them. Of course my son the deviant finds that wonderfully funny and belly laughs every time they ask him.
Next up was the Kidney doctors. We waited 45 minutes to see the nurse practitioner. Of course we waited. We were 15 minutes early. Had we been 2 minutes late she would have been ready the second we walked in the door. Colby didn't care. He was sleeping on dads lap. As soon as she walked in he decided he was done with doctors and kept looking at the door. But even still through the whole appointment he was nice and relaxed. No throwing up, no posturing, no spasticity. The Kidney doctor came in and said that since Colby's blood pressure is so well controlled now we can go ahead and take him off one of his blood pressure medications. So see ya Atenolol. We are not going to miss you. Of course I will continue to monitor his blood pressure and if he goes above 120/80 with a resting BP then I have to call and we will adjust the doses of his remaining two medications. They also upgraded us to six month checkups. For the first time in two years we won't be coming to see them every three months. Thank you kidney doctor!
We started heading home after that. Colby was soft and content the whole way. He watched Wubbzy and just hung out. He smiled every time we turned to check on him. As soon as we came into the valley he started stiffening up. As soon as we walked in the door he started vomiting. Of course. Why wouldn't he? He is my backward boy! That sums up our fun filled totally backward and nothing as we expected it day today. How was your Monday?