all by myself
-Celine Dion, All By Myself
Actually, Jay DOES want to be "all by myself." He's starting to turn back into a two year old -independent-minded, determined to do it his way. It's a wonderful sight to see that he wants to stand up on his own. It's just not so wonderful to see him trying to stand up in his bed. Or in the wagon as it's rolling down the hallway.
His fine motor skills are absolutely back to where they were before all this started. He's hammering away with an accuracy that would impress most professional carpenters. He is still a master with a screwdriver and is currently gripping the saw with a pair of pliers, and then using said saw to "cut" the handle of his toolbox. Occupational therapy has been so impressed that they no longer want to work with him every day. One less thing!
The large motor skills are still coming back a little more slowly. He's trying to climb and stand and jump and walk totally by himself, but he's struggling to do those things. He's just a little too wobbly to do it alone, but isn't too happy having to hold our hands. I am terrified of him falling and busting his head. Every day he improves a bit, and we trust that in good time, he'll be back to doing all of those things independently, too.
Our biggest issue right now is with his tummy. Before surgery, the kid had a freakin' enormous appetite. He would routinely eat more than I did, and he ate a huge variety of healthy foods. But he just isn't interested in eating anymore, even things that were his favorites. He's got to get enough calories for his overtired heart to continue its recovery. We are doing all kinds of happy dances to celebrate every bite of french fry or chicken nugget that he eats. (There are different dances for different foods, ya know.) And then after counting every calorie and every ounce of milk, he pukes it all back up when he gets upset over some doctor coming in and offering to remove a bandaid. Fantastic.
We'd been a little concerned about his ability to swallow, which earned him the uber-fun swallow study during naptime today (and he was so not tricked into believing that chalky-tasting barium was milk!). A week after being on the ventilator, he was still coughing when he attempted thin liquids. He had been drinking his liquids with thickener, and surprisingly didn't seem to mind. But the swallow study showed that everything is totally normal. Yahoo! So, now he can eat what he wants including regular liquids. If only he wanted to eat something...
The worst part is that he is regularly yakking up his meds, of which there are many. Tonight we spent the better part of an hour cajoling and convincing him to take his medicines in tiny little sips. (Don't want to force them down - cause that just causes puking.) Just as he took the last one, up came his entire dinner and all of those medicines we worked so hard to get down. I seriously think I saw Derek knock his head on the wall in frustration. So, then we got the fun of doing it AGAIN!
This time, we decided to hide it in applesauce. I gave him the awesome line "You have to eat the applesauce so you won't be hungry during the night!" He totally sees through every trick we can come up with, and was well aware that there were drugs in the applesauce. Oh brother. I then spent an hour and a half trying to get him to eat 10 bites of applesauce (which were hiding the 8:00 meds AND the 10:00 ones!). Just another opportunity to practice patience, I guess.
Thanks to all of you who posted funny, interesting, or informative comments here and to those of you who sent email distractions today. I can't imagine trying to go through this without the support of family, friends, and internet strangers who are praying for us and pulling us through.