Look at me...I'm standing! Kinda...

I had a post all ready to go late last week in which I sounded really discouraged. Jon just didn’t seem to have any energy. He had been sweating a lot last week but not running a fever, that is one that is considered normal fever for others, but he’s usually a degree below normal. Many of the people coming in the room complained of it being on the cool side since we had turned on the air conditioning. During the week-end he started to run a higher temperature but not near the 101 degrees needed for treatment. They did run tests for urinary tract and bowel infections but everything came back negative. He’s needed a little more suctioning and I’m running my normal congestion “thingy” where I can never decide if I have a cold or it’s allergies kicking in. At this time of year it could well be allergies but we’re both complaining of a sore throat in the morning.

He’s been very excited with his new physical therapy regime. He’s strapped to a tilt board which allows him to be raised to a standing position. As you can imagine he is absolutely thrilled with the feeling of standing! He likes it to go as high as possible which the therapist said scares her when she's on it because she thinks she's going to fall over. Occupational therapy came in today to see how well he was feeding himself. She talked him into trying to eat his salad with a fork. Up to now we’ve encouraged him to eat things like mashed potatoes and meatloaf with a spoon which is a little easier to control and then we feed him his salad. Carol has been here this week and she has noticed that his bites are getting a little larger so he is developing more confidence in himself (Barb noticed his bites started getting bigger over last weekend but forgot to say something to anyone). They are ordering some kind of extension that will allow him to pick up a cup so he can get drinks for himself. It seems he drives the staff crazy with his constant requests for a drink of water. While Barb was there tonight she noticed that he is asking for more water than usual so tonight maybe more interesting than normal for night time staff.

The speech therapist has been spending a good half hour working with him on cognitive skills. She may have him make a new word of an old one by rearranging all the letters, making “ate” into “eat” for example. Repeating a series of words and listening to paragraphs and answering questions on the information given are some other exercises. Yesterday she managed to extend the session to 45 minutes and I think she’s going for at least that today. I’m using that time to type this post. (The therapist is really interesting. She is a traveling speech therapist and is hired on a 13 week basis and then goes on to a different job in a different town. This is her second move and she’s finding it hard to leave the new friends she has made.--I would, too.)

We’re still being frustrated in having to constantly remind the aides of the turnings but there are times when time gets away from us and then we notice it is well over 2 hours since the last turn. The wound doctor took him off the VAC because he didn’t like how the wound was progressing. We think it is getting bigger and don’t like the progress that silvadene and bactroban is making. It's harder to keep the dressing clean since it is not vacuum sealed. It had already been changed twice today and when Barb left tonight it had to be changed again due to the awkward place it is located.

I’ve made up a chart to remind me of all the different exercises he should be doing at various times throughout the day. It also helps to pass the time. We didn’t finish The Kite Runner and I started Holes but while he says he likes the sound of my voice it does a better job in putting him to sleep. The book cart came around today and he picked another western but I only got through a page and a half of the last western he thought he wanted to hear and he was asleep again--some excitement!!

His favorite past time when Carol is here is going through her list of his friend’s phone numbers and goes through it talking to as many who are home….and up and around. He really enjoys talking to his buddies and it lifts his spirits. It’s too bad he can’t manage the phone in his room yet. We’ve found a way to tuck our cell phone in his neck brace which allows us to be able to walk out of the room and let him talk to his heart’s content. The phone disconnects when the recipient hangs up so we don’t have to worry about being billed for dead air time. You can call home to get my cell phone number if you want to call him sometime. I’m here throughout the week and Barb and her dad are here a lot in the evenings and over the week-end.

We are getting somewhere in reducing the medications he is taking. They took him off a rather powerful one and I’m anxious to see how much difference, if any, it makes in his mood. I so long for some spark in his eyes and some hint of determination. This is the second set of staff that have asked who wants him to go to Dodd Hall more, Jon or us… so it’s not just us in sensing a lack of enthusiasm. Warmer weather is coming and we can get him outside. We’re hoping the change of scenery and the tilt board will get him rolling.

Thanks for checking in.