Took Mother's Day weekend off from the blog because we were busy having way too much fun in Santa Cruz and Scotts Valley!  It was a blast...and due to dad's diligent support and encouragement in his complex's pool, Safi "swam"(damn good dog paddle with floatie wings) as much as possible and cried when we had to leave.  Nix enjoyed warning people that they may sink and drown, blowing bubbles, and bravely venturing off of the pool steps and screaming, "Look!!!  I'm touching the bottom!!" before scurrying back to the steps.  It was a really wonderful time and none of us wanted to go home.

The Friday before Mother's Day, Safi ran in her first track and field event.  She did the standing long jump and the dash and did great!  She was bummed that she didn't get a ribbon but she wasn't in last place, either, so we were able to convince her that she kicked some butt.

So, last entry I said I would talk about a radical idea to help break Nixi's increasing symptoms without med increases.  Two words....Recreational Vehicle.  Stay with me, here.  When Nix is falling down the rabbit hole and her symptoms are amping up I've noticed that changes in scenery can distract her enough from her internal world that she never hit the bottom of that hole. It never lasts and I get that it a desperate and extreme form of distraction but I don't give a shit.  I need to keep this kid as well as possible by any means for as long as possible so we can delay the dreaded Clozaril as long as possible.  Clozaril is the antipsychotic that will more than likely prove the best for her degree of symptoms....its also the most terrifying.  None of the antipsychotics are approved for use in children for Schizophrenia, and when used in children side effects tend to be more common and more severe.  The scariest with Clozaril is agranulocytosis which causes a drop in white blood cells which our body needs to fight infection.  Because this can and has killed patients using the drug the manufacturer has created a program where the patient, doctor, and pharmacist must be registered in order for the med to be dispensed in order to ensure that weekly blood draws are happening because this can be life threatening.  Myocaditis(inflammation of the heart muscle) and cardiomyopathy (enlarged heart) are both concerns, as well as seizures, and orthostatic hypotention (significant drop in blood pressure).  What I've seen on the parent support group that I'm in is that kids taking Clozaril, none younger than age 10, seem to experience Clorazil toxicity often causing them to have to be taken off the med to reverse the white blood cell decrease.  They are then put back on it but at a lower dose and it becomes a vicious cycle of a stabilized kid needing to be taken off meds due to medical reasons, becoming extremely mentally unwell while their body tries to recover, then going back on it and never getting the same result as that first time because their body can't take it.  Don't get me wrong, even at the lower dosage these kids are forced to go to they still do really well on it....but the damage to the body is harsh.  Given that Nixi will likely be on medication for the rest of her life....I'd like it to be as long a life as possible.  So, out of the box thinking.  The RV.  I'd like to try taking the girls on several two night trips within a few hours distance each week this summer.  I think it will break up Nixi's psychosis so it can't get a foothold and as long as there's a pool and kids, Safi will be happy as can be.  So, I'm trying to sell the giant RV we have on the side of the house that's in pretty rough shape to buy a smaller RV in less rough shape.  If it will last us a summer and get us where we need to go, I'm all over it.  Any family out there who thinks this seems like a reasonable plan and wants to chip in, it would be much appreciated.  You can contact Mike or I and let us know.  He thinks this is a good idea, as well, and as horrid as it is to ask for financial help.....if its for my kids, I'll swallow my pride any day.  I'm not looking at anything over $5,000...so we're not looking for a palace.  It just needs to be safe and have a great generator in case we get stranded somewhere.

She's struggling.  She's as happy as she can be, but she's not "stable enough", she's not doing that great.  I don't want to increase her meds because we're only half a mg from having to change meds.  While we're not jumping to Clozaril, the next med in line has its own host of side effects that aren't pretty and because we already know that she experiences extrapyramidal side effects (EPS) on Risperdal, the chances of her experiencing EPS on other meds is pretty good.  So, the RV may seem like a desperate measure....and it kind of is...but some of the best ideas were born out of desperation so we're going to try to run with it.

I woke up sick today and I'm beat so that's all I got for now.

Sarah