Been thinking about you and your poor little ds today - how is he. <disclaimer: I know you've already said on one of the other threads, but I'm having short-term memory problems at the moment and need to be told everything repeatedly. >
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.
Well, having not made it back to the computer I find that there are 3 friday threads - so to even things out I thought that I would post on this one too. - LOL at Poultergoose as she and I started threads within seconds of each other. Sorry to hear all the difficult weeks everyone has had, and here is hoping for nice peaceful weekends for everyone.
Oh BeeMom bloody seizures I hate them with a vengence. It is one thing if I had a magic wand would rid the world of. (dreadful grammar) How dare these so called professionals assume all our LO's undiagnosed problems are down to parental stress good luck from this side of the pond.
BeeMom much of your experiences are well outside of mine but I can relate to your feelings about the SW. How can anyone be so obtuse and unprofessional. Parental stress is such an easy cop out for so many things but I have never heard it used in relation to such a serious genetic condition before.
Thanks for the support - I am in a shaky place right now. It seems like I am watching the world pass me on a cinema screen. I think it is likely due to no sleep last night and having watched Bee have at least a couple of dozen seizures today.
A little background story - Bee was admitted to the hospital at 3 weeks old and weighing only 6 pounds because she was having blue spells. It was during that admission that we learned that the blue spells were seizures and she had had a stroke. She was discharged after 10 days and we were asked to come back to determine if her swallow was safe. During the test, I told the OT that she had had a couple of blue spells at home while I was giving her seizure meds. OT told the paed, paed readmitted her.
I can remember the meeting where I finally called the SW in the carpet (and I still don't quite know where I got the courage to do it). During a medical team meeting prior to discharge with 9 professionals around the table I looked her straight in the eye and said "I have jumped through hoops for you, because of my emotional fragility, I agreed to the release of files that have NOTHING to do with Bee's current situation (I was 18 months in a group home as a teen because my alcoholic mother didn't want to deal with me and I was depressed). I have consented to blood tests, and tests of Bee's hair to determine if I was on cocaine before she was born (they wanted to blame me for her stroke). I have been emotionally dissected, blamed and questioned. Yes, I was a depressed teen - weighing over 300 pounds and with a sole parent who was an alcoholic, can you blame me? I did not ask for this hospital admission, and have done everything you asked of me without question while we were. At what point do my challenges as a teen mean that Bee did not have a stroke?"
Everyone stared at me in silence. The SW was asked to leave the room (and another returned in her place - the most amazing SW I ever met). It was without a doubt one of the hardest days of my life (and I have had a few, to be sure).
... and people wonder why I am so guarded now [bsad]