I don't know if I should say this or not, but . . . I THINK we might be through the worst part and things might be looking up with TongJie's recovery from his palate surgery on Tuesday. Friday seemed to be better, until about two hours after bedtime when TongJie woke up inconsolable, and Saturday (yesterday) was decidedly worse after that nearly sleepless night. However, today has been better for the most part and we're hopeful that it's a trend that will continue. I'm sure TongJie will still have his setbacks, but the pain seems to be a lot better and he's pretty much completely off the Oxycodone now (thank goodness - that stuff was really messing with him!), plus he's getting used to life with arm restraints. I mentioned in my last post a few days ago that the mitts seemed to be more comfortable for sleeping so we were putting those on him for naps and at night. Well, he was able to get them off so we ended up having to duct tape them to his sleeves every time, and that made him so mad that he would work himself up into a tizzy trying to pull them off. We decided to rethink our reasoning that the mitts would be more comfortable for sleeping, and last night put him to bed in his arm restraints. That has seemed to work better, so for now that's what we're continuing. He's getting used to the arm restraints and, although his positions of sleeping with them don't look at all comfortable to me, he's able to sleep a lot better because he's not mad. It's funny, because when we were at the hospital, the nurses were all really pushing for the mitts. They said that the mitts are the new thing now because the arm restraints are so restricting. Thankfully, we had talked to our friend Meegan, whose daughter had the same surgery a couple years ago, and she painted a much friendlier picture of the arm restraints, telling us that her daughter got used to them and it was not that big of a deal. I'm glad that we asked for a pair of arm restraints to take home with us to try, because otherwise they would not have given them to us.
We went to the Farmers' Market yesterday morning to get out of the house and have a little distraction. TongJie actually got out of my arms for a few minutes and walked around, but that was short-lived. That's why there's only one picture:
He has been doing a lot better, though, and today was willing to walk by himself for quite awhile on a walk that we took.
I took him to Lincoln Rock State Park on Friday, when he was having a pretty good day. Last time we were there, he loved picking up the acorns that are everywhere in Loop 1, so this time I brought a container to put them into. It was good practice for getting used to maneuvering with the arm restraints on. And it was a beautiful day! In the video, you can see him doing the sign for "hear" when he hears a siren. He's pretty good about not getting frustrated when he can't do the signs exactly where they're supposed to be, and we can still tell what he's talking about.
After we got home, he rode his new trike (a cool yard-sale find from a friend who's an expert yard saler) in the house, still with his jacket on. He saw the trike sitting in our carport as we were getting out of the car, and he wanted to ride it so he pointed to the trike and signed "help." He still hasn't figured out the pedals, but it probably won't be too long and he'll have it down.
Mealtimes are still difficult, but seem to be getting better. I'm sure TongJie's mouth still feels really weird and probably hurts when he's eating and drinking, but he's mostly frustrated because he can't feed himself. He's been doing much better with that, probably because he's beginning to resign himself to the fact that if he wants to eat, he has to let Mom or Dad feed him. Since he can't reach his hands to his mouth, he's been picking up the spoon or the piece of food that he wants and putting it in my hand so I can then put it into his mouth. That seems to work well, because he still has control over which food he eats and when. When there's not food around to be had, we sometimes take the arm restraints off and let him drink by himself. He's getting better about drinking out of an open cup, and he's been especially fond of drinking out of those little 8-oz disposable water bottles filled with different drinks. The information we were given says the patients should not drink out of a water bottle, but TongJie has never put the entire top of the water bottle inside his mouth like many kids tend to do - he always uses it like an open cup (the way that most adults drink out of a water bottle), and we're always watching him closely.
This evening before bedtime, we were giving TongJie a break from his arm restraints, which we're supposed to do at least three times a day but he has to be closely supervised to make sure he doesn't stick a finger or object into his mouth. He was sitting on my lap at the table while I worked on folding a mountain of laundry, playing with a toy hamster that our friend Kayla thoughtfully gave him as a get-well gift. TongJie was worn out from the long day, and finally laid his head down on the table to rest. Jeff grabbed the camera and tried to take a few photos.
He went to bed with hardly a hitch tonight, and with no Oxycodone, so we'll see how the night progresses and if I can stick to my earlier words about the worst part possibly being over. Thanks for all your thoughts and prayers!