Welcome first Sunday in October. In our house it was a pretty quiet day: Eric and I went for a walk and then came back to keep Bradley from scratching his hives and still fighting that fever. Looking back on the day, I almost forgot that we snuck out for a half hour walk to clear our heads and remind our bodies that exercise is a thing, even when the little boy is so sick. Just like I forgot that me watching "Downton Abbey" at 2 in the morning was actually part of this day too. Benadryl is a four to six hour med, the doc wanted six...I pushed to just over five because the little boy was ready to crawl out of his skin and needed the relief. I know, I'm a rebel...but take heart friends - in some galaxies far, far away the Rebels are the good guys... sooo there's that. We were able to push the Benadryl back to six during the rest of our day so that's a win there too.
Lots of negatives this weekend, and a little harder to find some bright spots, but I will anyway. The dark can be a frightening place full of monsters after all, so finding the light is something we must always attempt - no matter how small the light or how hard we have to look. Here's mine. Bradley is terrible about chewing his shirts and sucking on his hands...like gross and so hard to listen to and prevent. When he has his movie he hates when I sit beside him, he knows that every time he puts his hand in his mouth I will take his movie and as soon as he takes his hand out - I give it back. Too bad I cannot be constantly beside him, he knows to wait me out. Bright side? He knows to wait me out. He knows that eventually I have to make dinner, change the laundry, fold it, put it away, clean the house...something - anything to give him his peace. Half the time I am cleaning up the living room because it takes him ten seconds to turn it in a disaster site while I am taking care of something else. He's pretty good about cleaning up, but it takes a while and once he's done, there is an inevitable new chore I have to do and as soon as I leave the room he dumps all the blocks to find all the four squares or all the eights...dumping the ones he doesn't want...or he wants all the square magna tiles and not the triangles... again...wait me out and he can take care of his business while I take care of mine.
These last few days he has been so miserable that he hasn't once put his hands in his mouth. I would like to hope that of all the horrible parts to these days we could have one highlight and that being that he never forgets the connection of not wanting to suck on his hands. Nothing would make what he has been through worth it, but I wouldn't begrudge the sleep loss for myself if I could have that lasting benefit. Only time will tell on that score for sure. So that's been a small win, albeit a heavy price...so as with most things Bradley - a mixed bag for sure.
We've seen some other behaviors that we haven't really seen before. He has acknowledged that he doesn't feel well, and rather than fight it and us...he has willingly chosen to lie down in his bed, or crawl into one of our laps for comfort, or snuggles, or a nap. Today, after venting and meds, he chose to spend the next thirty minutes lying in his bed, mostly rubbing his legs. Since he wasn't scratching them, we let him be and just kept an eye on him through his camera. After about thirty minutes, he went to our room, that's when I joined him. He was half on and half off our bed, so I put him up on the bed and asked if he wanted to lie down with me. He doesn't answer in words, instead he just lays back and then hugs my neck. If I rub his palms, I can keep him from scratching and ease him to sleep, he needs all the small naps he can get for sure. When the hives go away and the itchy rash disappears again, we can worry about straightening out his days and nights - until then, the battle is hard enough without fighting the whole war in one sitting. For now, his understanding and small attempts at communicating what he needs is all positive.
We even used the Speech iPad, with him letting us know when he is frustrated and wants to play with something different or wants his milk. Small things, but important things in his world. The best part? When he has his headphones on, he will slip one phone off an ear so he can hear his iPad's voice, then when he has accomplished what he wanted to ask for, he will put the ear piece back on his ear. It's pretty stinking cute!
I've been bolusing milk and juices to keep him hydrated and fed (I use a 60ml syringe to push fluids through a tube into his G-Tube)...yesterday mostly juices and today we moved to increase his calories. I think the increase in milk was enough to stimulate his desire to use his straw cup a little more and I am thrilled to say that he even chose to feed himself some bites of mac n cheese; the ultimate in comfort food, at dinner. As per his feeding requirements, Bradley knows he has to drink his juice after every bite, so at dinner that's what he did - took a drink after each bite. He didn't have a whole bunch to eat, but he sat with us, gave himself a few bites and drank...it was a win in the books for sure.
Hoping tomorrow brings a healthier boy, a feverless boy, and a happier boy. And if he happens to be a hungrier boy, that will be a happier mom and dad too. Small steps, because in our world those really count, and every connection made is one more milestone that we eagerly wait to see, no matter how small.
Hope you all had a great day.
Thanks for stopping by the 31 For 21 Blog Challenge for Down syndrome! Have a good and peace filled night.
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