Dunno which thread to pop in to - and it is almost midnight on your side of the pond, so I doubt anyone will read this anyway...
Been quite the week for us. After a lot of ups and downs, we had a new pet join the family on Monday - a dog named Bailey. Bee loves her, she is pretty sweet and is settling in well.
Tues was Bee's appointment with the new neuro. Eye-opening, at a minimum, grim beyond that. Another new drug to try, then a last chance one after that, then either surgery or we accept that there is nothing we can do to stop the almost constant seizure activity.
Rest of the week was more of the same... DH still can't find a job, regular household challenges.
Today has been a weird day, though. I got a call that some of the genetic testing that was supposedly inconclusive when it was done 3 years ago is suddenly "significant" as the mutation that they found has been described in literature elsewhere as being disease-causing. Still doesn't have a name, or a treatment, and the prognosis for Bee is poor, but now I get to try and wrap my head around the fact that it is 100% positive that DS has it too, but a milder form. Bitter pill to swallow, but nothing different than he was yesterday.
I would love to march to the office of the SW who suggested that my emotional state was more of a concern than Bee's health more than 7 years ago (she was soundly dismissed by her supervisors, and subsequently dismissed from her employment after multiple complaints) and act a little stabby, but at least I know there will be a special toasty place in hell for her. I will be curious to see how other "nay-sayers" we have dealt with over the years will swallow the news.
To top it off, Bee's nurse cancelled tonight, so I am in for an all-nighter. Think I might write to the authors of the papers where my family's mutation is discussed and advise them we exist... they might want to broaden their sample size. Sounds more stimulating than washing the dishes.
Happy weekend!!!