I'm Ba ack

I think. I hope.....

Boy. life just has been so absolutely insane. Combine the tripple roller coaster of raising a spectrum kiddo with a dollop of discovering significant medical issues in one of the parents, add a twist of finding out that kiddo no 2, while most definitely NOT on the spectrum, has the same immune system, digestive, metabolic, and what not, shitta going on as his hig brother, and.. for the Grand Finale.. top it off with the devastating news that one of the kiddos grandparents is terminally ill with cancer, and what do you get??? ...... [drum roll in the background]....

You guess it - you get my soap opera in the extreme, absolute trainwreck of a life.

Oh... you want details? All the gory details?

Well, sit back and enjoy the ride (the girl has gotta keep her sense of humor - twisted though it may be).

OK, where to start...At the beginning I guess....


Last time I updated this, the boys' dad, H., was going through a diagnostic process for his ever increasing migraines. He went to several different neuros, was poked, prodded, gave buckets full of blood, and was about to be sent home with the diagnosis "It's all in your head" (well, no shit Sherlock, migraines typically ARE in the head), when he had an "episode" right smack in front of his chiropractor. God Bless that chiropractor who had dealt with these kinds of episodes before, recognized it for what it was and was able to provide a very detailed account of what happened to the various neuros that were at that time dealing with H.'s issues.... and BAM... we had some serious action on the part of the medical professionals (finally).

What a difference having a detailed observation from another medical professional made in having further investigations set up. Never mind that I had dropped the '"S" (no, not THAT S word, you dumbass, I meant SEIZURE) word more than once, but hell, I'm not an MD (although I can talk circles around many of them) and must therefore be a nutcase.

Moving on... H. was admitted to the hospital for a 4 day epilepsy study. Lots of little 'spike' activity was found, nothing really too concerning until....BAM once again... he had the "BIG ONE" about 30 minutes before he was supposedly getting discharged. Needless to say, discharge got delayed while the experts scratched their heads and consulted their books and finally came to the conclusion that... surprise, surprise... H. has a partial complex seizure disorder originating from a focal point in the left frontal lobe.

Oy

That diagnosis certainly started to fit a whole bunch of puzzle pieces together, the absence spells, the migraines, the loss of speech and motor control episodes, the on again, off again clumsiness, even the mood swings...

H. has been on seizure meds since that epilepsy study, and anybody who has or knows another person with a seizure disorder knows that it's not a matter of popping a few pills and voila your seizure issues are gone. This is a very tedious process of slowly building up the meds (as most of these meds are cytotoxic as hell, so you don't want to blow the patient's kidneys and liver to Kingdom Come by immediately going to full dose), trying a few different med combos, lots of blood work to monitor med build-up and how your vital organs are handling the meds... and all the while, as you don't have full protection of the meds yet... the seizures do go on. And several of these meds have an impressive array of side effects.. especially mood wise....

So we have had and still are having lots of fun with the whole med build up process. Finally, these past 2 weeks have been halfway decent in terms of seizure activity and the ability to control or stop them in their tracks. H. is by no means seizure free as of yet, and meds wise there is not much more left to be done. He now hasto start taking a closer look at what trigger factors are (physical stress?, mental stress?, diet?) and find better ways to mitigate those trigger factors.

Needless to say this whole seizure circus on top of Salamander's challenges has placed quite a burden on what little was left of my sanity to begin with. We are truly trying to get through life one day at a time, frequently one hour or even a minute at a time. The boys have learned to handle their dad's seizures in a stride, they both know that daddy has a seizure disorder, we don't dance around issues in this house.

That is, they know the word, I'm not sure they completely understand what it all means, we've tried to keep the explanations simple... when dad has one of his episodes, we tell the boys that daddy's brain had the hick-ups and that daddy's brain needs to go reboot itself. My boys may not know that before CDs existed you actually played something called an LP on a record player, but boy, they do know what a computer reboot means...

And this then concludes the first installment in the trainwreck saga. Time to get dinner ready for the Hungry Horde.

Later, alligator (I hope, unless the train rolls of the damn tracks again.. so if I don't resurface in the next few days, you KNOW I have had to add another installment to the trainwreck saga)