January 28th

Dad had his swallow test this morning. They sit with him and watch him drink and eat different food consistencies with green dye in it. Then they stick a camera down his nose and he and everyone else can see where exactly the food is going. He is still aspirating some things so they told him that he can have 20 teaspoons of pudding type consistancy foods 3 times per day. That will help the muscles in his neck regain lost strength so he can move on to regular foods.

One of the doctor's from Chaloupka's team came in also. Debbie asked him why it was that no one knew what was causing all of this. He said he didn't know why everyone was saying that because they DO know what it is. A small precentage of patients with large aneurysms have this side effect. In that small group of people, steroids work. But for some reason with dad it isn't. The brain tissue surrounding the annie is acting like the annie is a tumor and is reacting to it causing the edema. The rheumatologists have not been any help and so Chaloupka's team is kind of upset with them.

They did a test on him yesterday to try and determine if his over-all weakness was steroid myopathy, or from the edema in his brain. He told Debbie that if it was the steroids, we might have a problem. Even though the steroids aren't making him better, they could be prohibiting him from getting worse. Chaloupka is supposed to show his face within the next day or two. I told Debbie to give him my phone number to call me when it is convenient for him as I have some questions for him.

Deb said that he was great yesterday. He sat on the side of the bed for awhile and his voice was strong. He talked a lot and told Debbie of his desire to still go on a cruise AND he wants to look into buying a lake house in Missouri. I tell you what, when all this is said and done I am holding that man to all of this. I will tell you how many vacations I have been on with him since I was 6.. NONE!! When him and Jordan and Martha galavant all over, me and Scott have gone NONE TIMES. Donut. Zero. None. He was seriously looking into purchasing a Motor Home last summer, but Martha wouldn't have any part of it. I agree...a lakehome is better.