Making Great Strides

Mom & I (sister Barb) apologize. We didn't realize it had been a week since the last entry. We appreciate all of you that check in daily and numerous times throughout the week.

Jon has been doing very well. He decides that he is going to go for a cruise and announces "I'll be back". He goes to visit others or just cruises around the center. It is good to see this. In the beginning with the wheel chair, he would only drive in 1st gear (it has five). I had to coax him into 2nd. He went into 3rd and 4th on his own. Now he is driving inside in 5th gear!!!! One of the nurses was teasing him saying that they were going to give him a speeding ticket if he didn't slow down! I told him "Don't you think 5th is a little fast inside?" He replied "I only go in 5th when no one is in the hallway" and "I let ladies go first". Obviously he has become very comfortable in the chair.

Sunday morning, Jon & I had taken a walk - Jon showed me the grounds and I showed him the inside of the retirement side (I had taken some weight loss classes a few years ago in their conference room). He really liked the inside of the retirement side. He said the Dining Room was much larger than his, it had lots of seating, a pool table(!!) and a fireplace. He apparently liked it enough that he took Angelique over to see it. She had come down for a friends' sons birthday party and to visit with her Uncle J! She enjoyed her visit. She and I left at the same time - I went to a birthday party (last minute invite only a few blocks from Jon) and while I was there Jon called me as he was having difficulty breathing. He has been taking his cap off and coughing. This allows him to bring the mucous through the trach and out the end. He had 3 really good coughing sessions and got quite a bit out. He had also been suctioned after the coughing sessions. Nevertheless, he decided that he wanted me there with him. Sometimes just having someone close by makes you feel better, so I came back. After he was put to bed, he was suctioned again.

Jon would really like to get back to Defiance soon. He asked Matt about what the goals are for him to go home. He needs to: 1) Get off oxygen 2) Get rid of trach - which means no more suctioning. He needs to be able to get it up on his own 3) Get off the feeding tube 4) Get on a bowel maintenance program 5) be able to transfer from a bed (not his current one) to a regular wheel chair 6) use a regular wheel chair. I don't understand the regular wheel chair requirement. If he is going to use the electric chair then why does he need to learn from a regular wheelchair?? Maybe back up, I don't know. Mom just now informed me that the projected date for all these to be met is end of the year maybe as early as Thanksgiving. This is a little longer than I had hoped. He is still looking forward to going to Salt Fork this year for the Castanien Family Reunion.

Sunday evening had been his last suctioning until tonight so it has been 4 days without suctioning. We will restart the number of days starting with Thursday evening. To go 4 days is great!!!

On Tuesday, Matt informed Jon that Medicaid would no longer pay for 5 days of therapy. Each form of therapy (Physical, Occupational and Speech) would be 3 days a week. During the other 2 days, Jon is to do exercises on his own.

Carol came down Tuesday and went back this evening. She went with him to his therapy sessions, helped him get his meals ready to eat and spent time with him. They enjoyed their time together.

(Jon continues to work on keeping his balance while sitting on the edge of the table, having his leg muscles stretched and practicing the pattern of push and slide on the transfer board to get on and off the bench. In occupational therapy he has been working with weights. His arms are not evening strong so he is working with a two pound weight on one side and a one and a half pound on the other. He continues to work with the peg board--I slipped and started to write peg bored which may be more truth than a slip of the fingers....Barb read this to me last night and asked what else she should put and both of us needed to get to bed so I didn't even try to think of anything else but this morning I thought you might like this info, too. Marj)