A little more info, for those of you who may be interested:
A cyst, like the one Jace has, is caused by a wrinkle in the membrane surrounding a section of the brain. This wrinkle effectively plugs up the membrane, so that the fluids that normally flow in & out of the area affected cannot escape. Thus, pressure builds up in the affected area.
In Jace's case, the affected area includes the brain stem, & the section of the brain that controls the finer motor skills. There is no finer motor skill than speach. Thus, Jace cannot talk. He can communicate with hand signs, but they are pretty limiting. He also has trouble handling things like forks & spoons. His balance is also affected. The pressure in his skull also caused some rather alarming growth in his head size. He has a big head, but it isn't all that noticeable. The shunt, if it works, will slow the growth of his head, & eventually he will be in a more normal head size range...if it works.
Dr Jane put in the shunt, which is basically a valve that is supposed to allow the fluids to escape into a tube, which runs down his neck & into his abdomen, where they are absorbed. Over the last 6 months or so, we've noticed that the tube in his neck sticks out like a finger in the skin of his neck every once in awhile. I suspect that the tube is crimped, & therefore, the fluids cannot be drained from his brain. The Dr doesn't seem to be too concerned about that, although he's had Jace go through an x-ray, an MRI, & finally, a CT Scan. The results of these things were all inconclusive. In other words - nobody knows if the shunt is even working at this point in time.
The CT Scan would have told us all that we need to know, supposedly, but we had to go through the x-ray & MRI before we could try the CT, thanks to the assholishness of our insurance company. Every test comes with a co-pay, &, at this point in time, Ian owes well over $6K, in spite of paying for coverage every goddamned paycheck.
The state of WV has decided that Jace needs special attention, & they require that he go to pre-school, even though he's only just turned 3. Of course, they've sent him home more days than he's attended, because he gets sick so often.
Since my schedule is more adaptable to change at the spur of the moment than either Ian's or my wife's, I spend a LOT of time with this child, & I am more than ready at the moment to start kicking some medical ass on his behalf. (Sorry, sans!)
Thos sort of cyst can also cause seizures similar to those seen in epilepsy. He is very sensitive to light & sound, as it is. It breaks your heart to see this child, who, on a good day, is so full of life, so active, & so happy; to be reduced to a tearful whining helpless being who can do nothing but hold his head in agony, & then throw up, & then sleep. I can see when it's coming on. His eyes droop. His mouth goes a little slack. Yet through it all, he tries his very best to keep moving, to keep having fun, to keep learning or playing or whatever he can to ward it off, only to fall into it all, over & over.
Makes you wanna kill somebody, but who can you blame? God? Okay, I could find it in me to hate a god that lets this happen to a little kid in my life. But it doesn't help much at all. All I can do is to ask - what can we do next? And make him as comfortable as I possibly can.
SMILE - it's the safest way to spread your cheeks!