The absolutely fantastic news is that at 12:50 p.m. today Joseph swallowed water for the first time in over 2 years! Wahoo! Okay, but don't tell anyone ... shhh. Officially, Joseph is not supposed to drink anything until the doctors give permission after they are sure everything is working properly. Here's the story ... Joseph really wanted a drink of water and I made sure he understood that he wasn't supposed to swallow, but swish and spit it back out. He assured me he would. The 'problem' came because he is used to swallowing down to his reservoir and then using his throat muscles to clean out his throat. Joseph went through those motions, but not much came back out. I realized, "Wow! You actually swallowed and it went down!" He is definitely going to have to learn a "new normal."
Meanwhile, he's more alert and has asked for ice cream and to go home. I think he'll need to stay awake more than 20 minutes before we do either of those. His heart rate, temperature and respiration rate (how fast he breathes) have been high. They seem to go higher when he sleeps. He doesn't seem to be in pain, but we don't know why this is occurring. Hopefully, he'll settle down and have a good night. Steve is staying with him at the hospital tonight.
Signing off,
Jill
P.S. Michele said I should title this entry "Breaking the Rules Again." Remember Belgium?
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