Well, we finished day one. It turned out to be a good one. We walked down to Hermann Park and strolled through the park. We played Bakugon...Jon's new dueling game. I have no idea what I am doing, but he lets me play anyway.
We had an interesting time with Jon's medicine regime. He has to take Zantac because the new med can cause heartburn. They sent him a pill, instead of liquid. I told them I thought I could get him to take it. I did get him to take it, then he promptly threw it up all over the floor. It was my fault because I stuck my finger down his throat to get it down. Fortunately he hadn't taken the other meds yet. Next he took his arginine, which is what he takes at home. He did great with this. Then came the Buphenyl, or the placebo, depending on which part of the blind study we are doing. It comes in a powder and has to mixed with something. We chose a melted orange Popsicle. It dissolved pretty quickly and he took it well....We do this every 6 hours.
At his 6 pm doses they sent the Zantac in liquid form, which has a funny taste but Jon was a trouper and got it down. Arginine, no problem. The nurse, a different one this time, mixed it into this thick syrup that they used for other stuff. It clumped up and would not mix in. Jon tried to take it. Finally I got him to drink the grape flavored liquid out of it then I mixed the clumps in a spoon with his mashed potatoes from dinner. So he had lumpy, grape flavored mashed potatoes. At least he was used to the lumps! His nurse tonight is going to go back to the Popsicle. Since we are the first in the study, there will be some trial and error. Tomorrow will be better.
I asked Jon what his favorite part of the day was, he said "playing Bakugon with you at the park".
Jon's summary of today: "I got to go to the teenager game room. We played Foosball. I got my hair cut and met some baseball players. They game me a shirt."
If you want to keep up with our pictures you can go to http://jonattexaschildrens.snapfish.com/snapfish and enter the code word :jonathan.
Thanks for all your support!
1 comment:
Hi Jamie & Jon,
Tyrone & I wanted to write a quick note and say 'good luck' in your study. I wanted to let you know how brave I think Jon is for doing the study. I laughed so much reading your adventures and was so suprised how much alike the boys are. Tyrone loves his husky dog (stuffed that he sleeps with for about 10 yrs now) and his Yu-gi-oh cards (dueling game)he owns a ton of them and his gameboy advance games (anyother video game system in the world there is). Good Luck to you and have fun on your adventure. Teresa McCoy & Tyrone Davis (28 years young).
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