Man, what a week.

Safi started first grade and it went WONDERFULLY!  She loves her teacher, is making new friends and enjoying seeing her old ones, and she tells me all about it!  We have her taking the 3/4 of a pill of the Zoloft and its working beautifully.  Quality of speech is back to "wow you" levels, and her coping is terrific.  She told me all about playing on the playground, the class rules, the reward system....beyond dreamy.  She is exactly where she should be and it is amazing to watch.  After the first day she was so wound up and excited that I knew she'd have to blow off all of the adrenaline and emotions some how.  Indeed, she did.  She got herself stuck on a climbing wall at the park.  I helped her down. She did it again and I told her she needed to figure out how to get down herself.  She proceeded to scream that I was a terrible mother and that she was going to smack me in the face.  Yeah, sure thing kiddo, once you get off that climbing rock by yourself you give it a try and see how well that works out for you. She needed to get it all out, all of the feelings, and that was okay.  Did I like the method, no, but that's never been up to me.  Only Safi knows how to scratch her itch.   Much screaming and crying...but she made it off the rock.  I gave her a high five and said that I expected an apology..."I'm sorry" would have been sufficient in my mind.  What I got was amazing...."Mom, I'm sorry.  I'll never say I'll smack you in the face again."  Rest of the day, the following school day, and the weekend have been top notch.  Safi is hitting her stride.  Watch out world.

Nixi.  What to say about Nixi.  I took her Thursday to visit her classroom and teacher for a dry run of sorts and so that I could take pictures for her slide show.  Started bad with the regular parking lot being closed.  We had to enter the school from the front which we had never done the two years that Safi went there.  In the car she was rocking our to the Rolling Stones "Shattered", but I could tell she was nervous because she was rhythmically kicking the hell out of the back of my seat along with the beat.  She remembered which classroom was Teacher Mel's and she was delighted to get to open the door and let herself in.  I was surprised to see strangers.  A new aid, Teacher Candy, and a new preschool school psychologist.  Much to my relief, the new school psych is lovely, young, interested, eager to learn, and seems genuinely invested in Nixi.  Massive relief.  Nixi played, reacquainting herself with the glory that is Mel's room.  She prepared a lunch for Horsia (her mom hair horse), and flitted around the classroom as Mel, Tessa (the pysch), and I spoke.  She lasted a good 30 min then crash and burn.  I could tell that she was hallucinating, Mel could, too.  It was obvious that she was seeing things and she asked to go out of the classroom and play on the playground.  Once out there she saw a bug and it was downhill from there.  Man, she talked about that bug well into the night...and not in a good way.  On the ride home I asked her if I could ask her a question and if she would tell me the truth.  She said she would.  I asked her if she was seeing anything in Teacher Mel's classroom.  "Yes, monsters."  I asked if they were scary.  "No too much."  She was off and running on a complete psychotic bender for the remainder of the day.  Not that she was stable to begin with, we're still not there yet, but hugely worse.  Meltdown at Safi's school with pick up because it was too crowded, delusional, just generally really unwell.  Then Friday she had a good day.  It was like her psychosis reaching maximum capacity the following day had scratched her itch.  She had a lovely day running errands with me and played the whole time in the fountains with Sophia and Emily's kids after picking Safi up from school.  She had a good night, too.

Now, because I cannot leave well enough alone...I didn't.  Let me preface this by saying that most adults who's illness is well managed by meds routinely increase their meds a few days before a potentially stressful event and until the event is over.  So, Saturday rolled around and it was time for the next Risperdal increase, if needed.  Based on what I stated above, the fact that she only had one good day (Friday) and is still not stable, and with school starting on Monday I gave her the additional .125mg in the morning.  While I'm still not thinking akathisia, man was it a gnarly afternoon.  She just doesn't seem to do well with Risperdal during the day.  It hits its peak dose within a few hours, the most likely time for side effects, then the steady state is maintained for about 20 hr.  Its all terribly detailed and confusing.  I wont bore you or confuse you with it all.  But what I think it means for Nixi is that she needs to hit that peak state while she's asleep.  If she hits it during waking hours she's a mess.  The girls wanted to fly kites.  Excellent day for it.  Took them to buy kites and Safi brought an extra she had never used.  They picked their kites and we were off.  Once at the park I began  assembling the kites and the one Nixi chose was broken out of the package.  Bad start.  Safi offered her the kite she had gotten from the Easter bunny.  Very sweet, and only semi appeasing.  The girls were off and running, literally...there wasn't a ton of wind.

Then, literally at the moment I stopped videoing....CRASH AND BURN!  Nixi's kite wasn't as high as Safi, she was thirsty, she needed to eat (The Risperdal is making her feel insatiable hunger all of the time.  Try telling a 4 yr old who's body says she needs to eat that she just simply can't.  Hard to tell what's worse, the hunger meltdowns or the psychosis the meds are supposed to be treating.)  Nothing was right in Nixi's world and she completely fell apart, reduced to a screaming, crying mess of a little thing.  Raging that I am a terrible mommy, then hysterically crying that she needs me.  It was horrible.  We went home...because you cry and scream at the park you go car, go home, go bedroom or chair.  And she did, crying the whole while.  It was sad.  It was her illness...but it was also the medication that I chose to give her that contributed to this total meltdown.  Did I do the right thing?  Why didn't I trust my gut and give her the increase with her nightly dose, despite the psychiatrist telling me to rotate the increases AM, PM, AM, PM, etc?  Why are we doing this to her at all?!  We have never seen an improvement beyond the gains we saw at the .25mg dose, which was total obliteration of her disorganized thinking/speech...no small gain by any means...better attention, focus, and coping.  But there's a reason we've been trying to increase.  Initially it was to see if we could get to her hallucinations and delusions.  Not obliterate them, though that would have been lovely, but at least keep them from prompting her to hide a knife under her pillow.  Most recently because she has gotten worse in all areas, and the disorganized thinking has crept back in.  How much do we keep throwing at her in hopes that she will go back to the level of functioning she was at with .25mg.  Do you see how ludicrous that all is.  I'm trying to get her back to where she was in April on her .25mg starting dose by upping her meds to a total of .625mg now.  What the hell are we doing here?!

I'll talk with the psychiatrist on Monday, but I think I'm calling it a day and we're staying at the .625mg for awhile.  At this point it will be nearly impossible to tell why she's not stable...could be the wrong med, could be the transition to school, could be Safi back at school, change in park routine, could be progression of the illness, could be anything.  I'm not taking her up the 1mg because I just don't think we have enough valid data to justify going there yet.  I need a metabolic panel to check her liver, kidneys, etc. and a glucose screen to check for hyperglycemia.  I need to see what we are doing to her.  Agreed, she is at a point where we need to put her mind before her body...but we can't ignore her body, either.  I'm getting closer and closer to letting go of the Risperdal dream.  It just may not be the med she needs at this time.  Its all just really overwhelming. Overwhelming doesn't even cut it, its just plain evil to have to make these decisions for a 4 yr old.  Fuck schizophrenia and the meds that come along with it.  Its all a crock of shit.

End of rant.  I alluded last week that I would be going into my thoughts on homeschooling and modified school schedules this week.  I can't even go there today.  I'll address that next week when I have the mental energy...and Nixi's had her first week of school.  Who knows, could change my perspective completely.

So, be thinking of the Nix this week as she starts a new chapter with Teacher Mel.  Safi will begin the more stable school schedule, as this last week was a get to know the rules and friends kind of deal.  And, no matter where we are at the end of this coming week...psychotic as hell, stable, whatever...as long as no one is rocking back and forth in a fetal position in the corner of a room my kids are going to the circus!  Yep, you read that right.  The circus is in town and and this time we're doing it!  Emily is on board with her kids, Amanda's down for bringing Sophia...GAME ON!  We could hide in our house, insulate ourselves from the world for fear that anything and everything could tip the scales and send us tumbling uncontrollably down the rabbit hole....or we can live.  My kids are kids first.  Their diagnoses and challenges are a huge part of who they are but by no means the sum of the whole.  They've always wanted to go to the circus.  I've learned that in my house, and in life, there's never a "perfect time" and often not even a "good time" for new, potentially exciting and simultaneously terrifying experiences.  We can choose to stand on the edge of the cliff and stare into oblivion with fear and trepidation, or we can trust all of the supports that we have in place, hope for the best, and repel.  Next Sunday, my friends, we choose to repel!  We choose to LIVE!  Wish us luck!!

Sarah