August 30, 2017 9:50 pm

We felt like a normal family for about 10 minutes today -- the first time that has happened in over two months. We received the necessary training today to clear us to take Josh off campus (but not in a car yet) and so the three of us WALKED up the hill to our apartment, grabbed a small cup of ice cream in the lobby (yay, it's working!), took the elevator to the fourth floor, went in our apartment, sat down on the couch (big sigh from Josh), and watched 10 minutes of Big Bang Theory. It was nice to feel normal, even if only for a few minutes.

The day started with Mary feeling sick -- sore throat, fever, achy joints, etc. Fortunately she improved as the day went on.

PT and OT were combined today so that we could be trained on walking with Josh, both with and without his wheelchair. We learned such important skills as helping him step up or down a curb, tipping his wheelchair to go up or down a curb, and protecting Josh from falling into the street or other dangerous places. I guess we did OK because they gave us the green light to WALK (not drive) wherever we wish. The rest of PT/OT was spent bouncing and kicking a ball with Josh.

In ST, Josh tried to name parts of the body (eyes, ears, knee, etc.). He wasn't able to do it very well.

Josh spent a bunch of time in bed playing kids' games on Mary's iPad. He almost always seems to enjoy that. Meanwhile, Paul spent a bunch of time on the phone with various work colleagues!!

After walking all the way to our apartment and back -- more than Josh has walked at any one time in two plus months BY FAR -- we figured Josh would be pretty tuckered. So we had him brush his teeth and get ready for bed. Much to our surprise, he walked out the door on his own. Mary thinks Josh is enjoying his new-found ability to control where he goes and when. Freedom is a horrible thing to lose. Paul followed Josh and let him go where he wanted (mostly). He walked down the hall, pushed the button on the elevator, went down to the first floor, walked out the back door, walked around the block, and tried to head back up the hill to our apartment. (We can't take him off campus unless BOTH of us are with him so that one of us can bring the wheelchair in case he gets too tired.)  So Paul turned him around and pointed him towards the hospital. But when he got back to the hospital, he turned around and headed out again. Paul let him go where he wanted again (mostly). He tried to climb into someone's truck in the parking lot. When Paul asked what he was doing, he said he was looking for his truck. He wandered around another few minutes before finally -- reluctantly -- agreeing to head back to the room. He climbed in bed with a deep sigh. We thought he would be asleep in less than a minute, but he is still fidgeting in bed after 20 minutes. Interesting and unusual behavior,

For those of you scoring at home, Josh's shunt is still set at seven, which is very high, meaning that very little fluid is being drained from his brain. No one thinks he'll be able to stay at this level for very long, so we are all just waiting for signs of hydrocephalus to return. Both Mary and Paul felt like he started the day strong but started to wane as the day progressed. His hands started to flitter, his conversation started to fall, and his memory started to fail. We believe this is the beginning of yet another round of hydrocephalus.

We reported the situation to Dr. Makley. His original idea was to hold off until next Tuesday to do another MRI to ascertain the level of fluid accumulation in Josh's brain, but now he is talking about doing it tomorrow. We really don't want Josh to slide too far before adjusting the shunt to six, but we don't want to do it too early either as he needs the pressure to force the fluid out of the front part of his brain. When we asked Dr. Makley if we could do the MRI on Friday, he confessed that he was going to be out of town for the long weekend, but he is willing to do it tomorrow! Hey, doctors are entitled to vacations too, but we aren't happy with having to conform our schedule on this important matter to his. We believe tomorrow will be too soon; the results of the MRI won't be severe enough for them to adjust the shunt. And if we have the MRI tomorrow and the pressure isn't severe enough, we will be forced to wait until Tuesday to move on this. We prefer to have another doctor, preferably Josh's neurosurgeon at Swedish, do the MRI at the time that is best for Josh. This is tomorrow's battle, and Paul won't be around to help fight it.