Messy Summer School Fun........

Change...the main theme in the Seifert house this week.  Recuperating from old changes changes, excitement about new changes, and a mix of all of the emotions about the little changes we all experience everyday.

Since my mom's visit Nixi has been extremely psychotic.  While she is on anti psychotic medication, with increased stress you have an increase in symptoms...medicated or not.  Because she was not tolerating the Risperdal at an increased dosage we are unable to do what many with chronic mental illness do in preparation for stressful events...temporary med adjustments.  What we've read. and since come to know firsthand is that those living with schizophrenia don't do well with excitement, good or bad, they do best somewhere right in the middle.  Today Mike and I took the girls to a park in Visalia that they love.  The water feature was turned on and the girls got to play in the fountain.  Initially it was just Safi, Nixi, and one other child.  We watched Nixi create a game of running through the fountains in a pattern.  It was a very controlled, organized venture and she was enjoying herself immensely.  Over the following 15 minutes more kids arrived and with each additional body you could see Nixi become more and more disorganized.  Her voice getting higher in pitch, her movements becoming jerky and unpredictable, her facial expression changing and mood changing...anxiety.  Just as soon as the kids came, they left one by one to talk to a parent, stake a claim with their towels on the grass, grab a sibling.  With the removal of each child we watched Nixi become more organized, quieter, happier.  We literally watched the effects of neutral, excitement, and back to neutral on our child's brain in the span of 20 minutes.  It was fascinating and discouraging all at the same time.  It was a concrete example of why things like visits, parties, school, and life pose such enormous challenges for Nix.  Eye opener.  As long as we don't have this medication thing totally under control we really are going to have to do everything we can to keep Nixi's life neutral.  And even with the perfect med regimen we are going to have to be really vigilant about foreseeing deviation from neutral and being pharmaceutically proactive.  As for this week, she's been hallucinating much more.  A creepy black cat, wolves howling outside her window, monsters telling her to run away from her family.  Delusional, asking me if I know her real name.  I said no and asked her what it was, "Angel."  I asked her who calls her that and she said "Mommy and Safi."  We, of course, do not.  I asked her if my mouth moves when I call her that, "No."  So, now we know that some of her voices are that of mine and her sister's.  Voices saying mean things about me, so mean that she wouldn't tell me what they were saying.  Couple the secrecy with sleeping less and eating less...all bad signs, means she's more active in her world than ours.  By Thursday afternoon she was deeply involved in her world and difficult to engage.  We have also realized, though I have no idea why its taken us this long, that the constant scratching of her knees/legs and mutilating of her hands/palms are actually tactile hallucinations.  I was watching YouTube videos of people with schizophrenia talking about their illness and symptoms and was startled by the massive number of comments left by people with tactile hallucinations of things crawling under their skin.  So I asked Nixi if the itching was on top of her skin or under it, she said under it and made a comment about "it" moving.  She is also asking to go to the hotel (UC Davis).  So, we are going to plan a trip up to the psychiatrist in July to discuss the meds.  As we saw before with the .25mg, the .375 mg is good for keeping her relatively stable at home but not so much out in the world.  She needs more support than the current dose is giving her.  

Safi had a very exciting dose of change this week.  Her friend Zachary attended summer school on Thursday and she was elated.  She acted like a complete goofball, showing off and just being a total spaz.  It was wonderful.  :)  Its just the best to see her excited and happy about life, let alone a buddy.  Really, really awesome.  While the finer points of social interaction remain elusive, I am struck by how at ease Safi is in the presence of others and with on the fly changes. She is probably the best in our family at rolling with change at the moment.  HA!  Never thought I would EVER in my lifetime believe that!  So rad.

Mike had his last day at Corcoran, the prison that he's worked for 25 and a half years, on Friday.  He promoted to Associate Warden and is transferring to another institution, his first day this Monday!  It is unbelievably exciting and wonderful.  But its change.  I don't know if he's anxious about it, if he were he'd never show it.  I'm extremely anxious about it.  Will his FMLA (Family Medical Leave Act...means he can't be penalized if he has to take time off due to crisis with one of the girls) transfer over or does he have to fill out the paper work again.  Will the new warden understand that some days he needs to stay home with one of the girls for whatever reason?  Will it be okay for him to take a day off in July so that we can go up to Davis as a family?  Will he get home later?  What's his new cell phone number in case I need to get hold of him?  Will this new institution understand that we aren't a typical family and sometimes that sometimes we need Mike more than they do?  Will they care?  We shall see.  Nonetheless, a really exciting time for Mike and we are just really proud of him.

Sarah

Pool party.....