The weather had been gorgeous right up until the trip, and then of course... severe weather warning. So we left super early. Hahaha... Ended up being totally unnecessary and we got there two hours early. So we went to the two gluten free shops I really like. One didn't have any of the dairy free items, and I left empty handed, but the other had several. But wish we'd had time and money for Trader Joes too. Oh well, I'll take what I can get.
We dropped off the Aidan bears first.
The night before Aidan had been in my dreams, very vividly. He was holding Sandy. I got to hug and kiss him. As in all of my dreams since his passing, he was whole again and happy. I felt his presence with us on our way there and when we gave them.
Something I didn't know would happen... that feeling his presence would increase as we continued to give his bears. We chose not to discontinue the Aidan bear with this goal completion, so we could give more of them each year. I'm excited to take on some other service projects as well, but we wouldn't stop Aidan's until I get the feeling he wants us to.
The boys struggled, it was warm, with the heating on. I hate taking ice packs in the middle of winter, brrr. I felt like I could control it better when they all were younger and would wear the backpacks. They do not have their brother's personality with this one. He would gladly wear it, knowing if he didn't he'd end up overheated and miserable, seizing and vomiting. These guys don't see the connection. Even though Jace was still hot with his shorts and no shoes or socks. (Inside only of course.) Damon will remove clothing, and ask for ice packs at home. But as for being willing to use it to PREVENT it, no. As it happened, Jace paid dearly for the trip because he was still too hot. And had his first status seizure in a long time, shortly after our return.
They and we collectively decided to change Jace's meds some. Adding a dosage on two meds, for sleep, pain, and seizure coverage. Two more meds were introduced, one for severe abdominal pain, and the other for chronic ear pressure. Meanwhile one of his narcotics was able to be discontinued, and his zofran reduced.
We figured this was a good trade. The abdominal pain was such a big deal, my main concern. It was something we were always chasing with Aidan. I'm hoping this management will be smarter. So far I'm impressed and really happy with how everyone is working together. (Except the supplies company- but I don't think they will ever do their job right.)
Damon has had another med added, for pain, sleep, and seizure management. As well as an increase to the AED he was already on.
They both were checked for vitamin deficiencies again, as usual. And as usual, they came short for Vit D. Seems like no matter how much we give Jace of that stuff, he never tests high enough. It's crazy. This was only the second time Damon was checked. And we admitted we hadn't even been giving it to him because it wasn't part of his med list. When you have the amount of meds to deal with everyday we've had to, it's easy to understand how a Vit can get lost in the mix. (Jace's was prescribed already, Damon's had not been.)
They appreciated our honesty and prescribed the Vit. Hahaha... thank you. :/
As usual, the boys got lots of attention in the lunch room. They are loud and big and in adaptive strollers. Because it's the smaller cafeteria, even more so. Jace really liked the rye cheeseburger, saying it was even better. Damon threw a royal fit because it wasn't white and refused to even taste it. The boy is SO set in his ways. (Like during homeschool he is flipping out and refuses the "little letters" aka lower case.) At one point Jace started to sing the Minion banana song really loud and another boy in there sang back. So then he and his sister had a conversation back and forth with Jace for a bit before we left to the next appts.
The trip home was quiet for quite a while, as the boys had completely wore themselves out.
Whenever we make it home safe, I am so grateful. Not only from a travel standpoint, but just to be able sleep in our own beds and not be stranded somewhere cold or icky or too hot or where we can't afford.
As I mentioned, Jace really paid for the trip. I'm not sure he will be able to make it again.
Damon had a rough time, but he didn't suffer nearly as much.
No comments:
Post a Comment