Day Twenty-Eight - Just Say Graham Crackers

Today Dick hit another graduation. He had a cap put on his trach replacing his extra tubing that brought in his moist air and held his voice device. Now the one small cap holds his voice device and he now has a regular oxygen tube that goes over his ears and into his nostrils. Although, we think they are a pain when we are sick, this is a great improvement for him and much more comfortable. He will be going back and forth from the old device to the cap for a while until he tolerates it well ....but it has been in from 10a this morning and it is now after 5p so I think he is tolerating it pretty well.

Dick also had a swallow test today that he past with flying colors. He was given pudding, liquid and some graham crackers to eat while being x-rayed to see how his swallowing mechanisms were doing. He did so well he will get to have some meat tomorrow. This will also be a test for him and they will be adding the blue dye. If he passes this test he could be on to solid foods and the end of the tube feedings. I am sure he will pass this with flying colors too. Funny thing is he is really looking forward to a Diet Squirt of all things. He is worried about not having a fridge in his room to keep them in. He must be really thirsty....but who wouldn't be after this long.

Jeremy stopped by tonight to see Uncle Dick (Jeremy is working in the Chicago area). Uncle Dick was excited to see him. He helped Uncle Dick once or twice with pillows and to move his legs but the one thing that Jeremy learned is that you don't stand in front of Dick's fan. We had a chuckle when Jeremy adjusted Dick's pillow and then he said that's good but your blocking my fan.

I know we talk about how well Dick is doing... and he is, but I want to tell you a little about what he goes through and how hard some things are for him. His days right now are based on time. When you get there the first thing he usually ask is what time you are leaving. He needs to have a basis for how much time he has with you. He may ask you that same question a couple of times in the day, I think it's just for reassurance. Today, his nurse told him that they would come for him between 10a and 12p for his test. They didn't show up until 2p. I know things happen and they can't always stay on schedule but for him right now he only thinks of things in blocks of time. Between 10 and noon we had to reassure him that they would still come and get him for the test. Then by time they finally came after him he was so nervous and worked up with anxiety they almost had to cancel it and reschedule. Luckily, his speech therapist showed up and moved him to a larger, cooler room and one where Jer and I could both be with him. This calmed him down and he was able to continue with the test which like I said he passed with flying colors. He works hard at his OT, his PT, and his speech therapy and it is so hard to see him go through times like these. He is always apologetic and appreciative of anyone being with him- but we keep telling him that we know he would be doing it for any of us. We love him and we wouldn't be any place else. Today was the first day that I have actually cried while I was with him, because I can't do more. He is trying so hard and I pray everyday that God heals him quickly.