This is a video of Joshua swinging. I am also leaving the picture that went with the post in the post.
- Written June 15, 2013 12:02am by Kate Parker Joshua with the legos sent to him by sweet Molly & her older sister & mom. 🙂 The pictures I took of him playing with the assembled set the next day were all flashed out due to too much sunlight behind him. I will have to take some more. But this picture shows his excitement at realizing it was THE set he had been coveting for months. Super fun to be able to give it to him!!!
Since increasing his fentanyl dosages this week, Joshua has needed just 1-2 breakthrough doses per day. He is sleeping about an hour longer each night/day, but he’s comfortable and happy when he’s awake and that is worth losing one hour per day with him. Overall, he is more quiet now, which I think is a side effect of the medication, but again, it’s worth what we are gaining from having upped his doses.His weight is down 1.5 pounds this week (he gets weighed every Friday after being deaccessed & prior to his bath). I’m actually pleased with that because it appears to be fluid that he has managed to shed. The protein powder he’s getting every day seems to be helping a little bit in the fight against fluid redistribution in his body. He’s still puffier than he’s been ~ for the first time in his life, really, he looks chubby ~ but he is peeing a lot more volume than he was a week ago and he says it doesn’t hurt him to pee anymore, which is a huge thing and makes me believe the protein is helping somewhat (reminder: protein deficiency causes fluid retention as fluid gets pushed out of blood vessels and the gut into surrounding tissue).
Tonight, I took Emily, David, Sarah, Isaac, Joshua & Bethany for a walk. Emily roller bladed, the other kids walked & I pushed Joshua in his wheelchair while carrying Bethany on my back in an Ergo. We went to a nearby park because it is the only one in town that has a handicap-accessible swing and Joshua loves to swing when he is feeling good. When we got to the park, I was sad to find the handicap swing had been removed. I don’t know what happened to it. I decided we’d come that far and I wasn’t going to give up just because the swing that would enable Joshua to swing on his own was gone. I unhooked him from his feeding pump and carried him with his fentanyl bag to a regular swing and with Emily’s help, I got Joshua situated sideways on my lap with his right arm around my neck and his left hand holding the chain of the swing (on my right side). I wrapped my arms around the chains and held onto Joshua and then Emily pushed us very gently so that Joshua could swing. Let me tell ya, it is a challenge to balance 70 pounds of child & a fentanyl bag on your lap while swinging! LOL We managed, though, and it was totally worth the effort involved to hear him laughing. Emily took a short video if you want to see my happy boy. After about 5 minutes of swinging, Joshua was done & ready to go home. I loaded him back into his wheelchair, got him hooked up once again to his feeding pump, arranged his tubing so it wouldn’t get snagged in the wheels and then reloaded Bethany onto my back and then the kids & I headed home. It was a fun little outing and even though Joshua needed 2 breakthrough doses of fentanyl while we were out, the fact that he was able to tolerate going out for even a short time made all of us ecstatic.