I think the cookout went okay

We got home a couple hours ago from our first cookout/get together since moved home. I think all things considered, it went pretty well.  It’s going to be a work in progress as we move forward but move forward we must.  

The boys had fun, although our stay was almost cut really short because had really bad cramps and nothing could provide him with relief. 

He said that it was hurting before we left but he thought there might be pop at the cookout and didn’t want to ruin his chances of having some. We do allow him to occasionally have something other than the water his autonomic specialist has told him to consume. 

He’s only supposed to drink 2.5 liters of water per day and nothing more. 

It’s a very strick practice because of how fragile his system.  Maintaining a delicate fluid balance helps to prevent autonomic crises. 

Anyway, he eventually felt better and we had a nice dinner.  

We didn’t stay too long because we wanted to get Gavin home, so that he could rest.  

My parents are amazing and their willingness to host this today means a great deal. I don’t know that anything was fixed but progress was made and we can now move forward.  

That’s super important… ☺ 



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