Up and Down We Go

Yesterday he had the motility test and we will find out this morning what is going on.  The test was exhausting for him, as he had to get out of the chair in the nuclear medicine room 7 times and get up on the X Ray machine "gurney" and be slid into the machine (like and MRI tube-his head did not go in thankfully), then have a 1 minute picture taken and then off and back onto the chair. Even with help (fortunately they allowed me to be right there for the entire procedure)- each time got a little more difficult. When the third time came around he had a mini meltdown- "I just want to go back to my room and have Gatorade" and a little cry. We worked our way through this (bribery is a great motivator, expensive for grandpa, but useful and necessary) and the rest of the procedure went well.  We had the movie "Despicable Me on the whole time (which I now know by heart) and this helped focus his attention away from the task of the procedure. Good idea DeVos team!

Back in his room we ordered a grilled cheese sandwich (they make great gc sandwiches here) , he drank some Gatorade with his meds, and tried to go to sleep. Unfortunately it all came back up shortly after that and he did go to sleep.Never did eat the sandwich. He rested most of the rest of the day.

Susan showed up at 1:30 for his school lesson and he was too tired to rally. This gave us a good opportunity to talk about about where we are on his education trail, how I can fill in and daily keep him engaged, what to concentrate on, etc. A good and needed session. Thanks for your flexibility and generosity Susan.

Thursday proves that we are not on our time. We, Willem's support team, can plan all the events, classes, etc., but his health, which is not in any of Our hands whatsoever but in His, dictates what and when we will be doing what and when we can. If that makes sense it will be a miracle. Hopefully you get it.

I will do a short update form the hospital if I find out results this morning and if I can figure out how to do it on my new IPhone. (It's a little scary to have a Smart phone that smarter than me!)

Take care all and your thoughts and prayers are needed, appreciated, and felt. Keep it up- It is going to be a roller coaster ride through his recovery, key word Recovery!