So, the great news is that I'm feeling much better and Nixi hasn't gotten sick thus far!  The bad news is that mom started feeling really horrible and by Friday she had to go to the doctor.  She thought she was catching whatever I had but turns out she had a kidney infection and an ear infection.  Thank goodness she went in and didn't keep waiting it out thinking it was a different stomach flu.  Nixi bought mom rainbow flowers to help her get better...they're really cool!  We're all on our way to being 100% again and we're looking forward to a healthy week!

I finally went back to school on Wednesday.  It was great to be back but draining after being so sick.  Also, the class is getting ready for our 100th day of school on the 30th.  Parties are always exciting, and nerve wrecking, for me.  We each have to do a display of 100 somethings and present it to the class.  I'm terrified of doing this. I decided to make a picture of a monkey with 100 fruit loops and was super pumped...until I remembered presenting it to the class.  That made me cry.  Mom says we'll practice doing it on Tuesday, with her, Heather, and Nixi pretending to be my class.  I'm still really scared and its kind of killing my 100th day joy.  Hopefully when it comes I'll just get it over with and be able to enjoy the day's activities.

Nixi had a great week.  Nobody wanted to jinx it but she nearly a full seven days without and hallucinations. Not even at night!   She continued to hold some strange beliefs and had some fleeting paranoia but for the most part she was back to being her old, odd self without the extras.  Unfortunately, that ended on the seventh day with hallucinations of monsters in the foyer.  She's been off and on hallucinating since mid week last week.  Still, its better than before because there is at lease some breaks in her symptoms throughout the day.  The scary part for mom and dad is that she seems to be hiding her symptoms more and more, sometimes lying that they are not there when they are really evidently there.  Mom and dad need her to talk about them and keep them in the loop so they can help her.  It seems like if mom reminds her that if she doesn't talk to her she can't help her, Nix usually spills the beans.  Hopefully it stays that way.

Mom got Nixi's blood results back and everything was normal so not sure if there are any more medical issues that can be looked in to as the cause of the psychosis.  Mom will email the psychiatrist on Monday and see what he has to say.

We had a pretty low key weekend with mom trying to get well and me being tired from the last half of the school week.  Dad bought a HUGE 60" Wifi TV so we had a blast figuring that out on Saturday.  But on Sunday it was the park day extravaganza!!  We met Josh, Logan, and Zoey and Sophia from my class and it was awesome.  I continue to struggle with talking to friends so unfortunately I rarely really get to play with my friends on play dates.  I get nervous or I don't know what to say or what the rules of a game are so I generally just hang out on my own and watch.  I swung on the swings and tried to get involved a few times but it never really seems to click.  Logan helped Nixi climb up the big climbing rock and she stood on it like a billy goat for nearly the whole time we were there.  Even with her staying up there she still gets to play with kids because she just talks, and talks, and talks...even if they're not listening!  I'm really jealous of her sometimes and it makes me sad and angry at her all the same time.  I didn't yell or create a fuss, I just swung.  After the park Josh, and Logan, and Zoey had to head home but Sophia and her mom went to McDonald's with me.  That's where I shine.  In a kind of quiet place with only a few kids and none of the running or screaming and loud playing that often scares me with its unpredictability and chaotic whir.  Nixi, of course, was nearing her expiration date and Ms. Life of the Party was having a hard time winding down so she let out a few ear shattering screams of death at the table when we first got there.  Luckily she got it together and we didn't have to leave.  Lunch was fun and I was able to get in a little more face time with Sophia.  Still, it was a struggle for me to talk to her.  I hate this stupid autism business...it really stifles the me that I am inside and makes it so hard for me to show how cool and fun I am.

So, there it is.  We march on and look forward to a new week.  Hope this post finds you all healthy and well.

xoxo
Safi

A quick post tonight because Safi is super sick and we're all trying to make her feel better.

My blood draw went really well.  All I said was "Ouch!" then I happily took my stickers and lollipop and was outta there.  The nurse was really nice and she wrapped my stuffed penguin's arm to look just like mine. So, it was no biggie!

We got to hang out with the Shook's on Monday and give Penelope her belated birthday gift.  As always, a super fun time.

Safi went to the doc on Tuesday for a sinus infection, back to school Wednesday, and by Thursday morning sick with the stomach flu.  Today has been her worst day yet so she slept on the couch with mom all day.  Dad took me to the park and it was super fun.  As you can see from the above picture, I got dressed up for the occasion and we had a great time.

Dad's starting to feel sick but so far I'm doing good.  I'm guessing its just a matter of time before I come down with it, but I sure hope not!

So, with that, I'm off to tend to big sister.  Hoping for a healthier week to come....

Peace
Nixi

Back to school and back to the weekly grind.  Monday morning we were all up bright and early and I was excited to see my school friends.  Nixi was a little confused and anxious about not having school on Monday, though she never does, but she worked through it.  I had a pretty good week, but its hard to go back after a long break.  I had to get readjusted to the noise of the classroom.  By mid day, even two kids whispering was driving me nuts.  No major meltdowns, but it was obvious to my teacher that I was struggling.  It was obvious back home, too.  I cried on a few days saying I didn't want to go to school until mom said "ok", then I begged to go.  Mid week mom told me that I was going to have a play date over the weekend with one of my classmates, Sophia, and took the sting out of the rest of the week!

Nixi had a rough go of the transition back.  Tuesday was ok but Thursday morning she was crying and saying that she didn't want to go to school because it would make her "tired."  (*Side note from mom: psychotic disorders have two categories of symptoms, positive and negative.  Positive symptoms are the psychotic symptoms that are added to a person's life like hallucinations, delusions, disorganized thinking, etc. Negative symptoms are the things that are taken away from someone's life like motivation, concentration, energy, social motivation, etc.)  Lately, everything makes Nixi "tired", coloring, moving a wii controller up and down, going to a grocery store, etc.  Its more mental fatigue than physical.  She is doing a great job of realizing when things are too much for her and telling mom and dad.  Mom told her she didn't have to go, which then set her off on a crying jag about not going.  She pulled it together and went to school but the teacher reported that it was her worst day since she's been there (remember, this teacher just came back from maternity leave in November).  Nixi was angry often, emotional, contradictory, and sad.  The teacher got a little taste of what its like at home for all of us, where Nixi wants one thing and within seconds flip flops to not wanting it, wanting it again, total confusion.  Mom will request and IEP (Individualized Education Plan) with Nixi's teachers and stand in Speech and Occupational Therapy folks (both regular ones are going out on maternity) to talk about how we can best help Nixi given her new primary diagnosis of Psychosis NOS.

The report from UC Davis finally came in.  It was everything the psychiatrist had already talked about with mom when they were up there.  He wrote that "Symptoms are consistent with early onset schizophrenia but must also consider the impact of mood dyscontrol, including bipolar disorder.  However, psychotic symptoms are profound and separate from mood episodes.  In this brief clinical snapshot, her eye contact, social reciprocity, and playful fantasy was not consistent with spectrum disorders, but there may be some overlaps."  So, still looking at course of symptoms to decide between schizophrenia and bipolar, though he seems to lean toward schizophrenia and rule out autism.  In his treatment plan he discussed medication when it becomes absolutely necessary, enrollment in the National Institute of Mental Health (NIMH) study for early onset schizophrenia at age 5-6, and to consider labs for early psychosis work up.  Mom met with our pediatrician on Friday to discuss the report and any possible medical issues that we could look in to.  He was kind and empathic, and honest.  He said that there were no labs to run as he went down the list of rare disorders that mom brought, checking each off as he went.  To make mom feel better and to say we looked at everything he said he would order a metabolic screen, check ammonia levels, and re check thyroid functioning.  Mom will take Nix in this week for a blood draw.  That should be interesting.

I had a play date on Saturday with my friend Sophia from school.  We met at ImagineU and it was super fun. Nixi went too, even though she was a bit of a wild card that day.  We got to make fossil imprints to take home, we had a blast pretending to be sirens on the fire truck, and we put on a show on the stage...and then it happened.  Nixi grabbed a dress that I was going to put on.  I told her I wanted and she screamed at the top of her lungs.  I hate when she screams, and I really wanted the green dress, so I screamed at the top of my lungs and cried.  We were locked in a dueling banjos style scream fest in the dressing room...right in front of Sophia.  Mom came in and tried to broker a deal to no avail so she quickly got Sophia out of the dressing area and was able to calm us down.  It was awful.  I was so embarrassed and mad at Nixi.  Nixi was barely able to get it together to leave but I was able to pull it together and go give Sophia a hug.  Mom says the only good thing about it is that Sophia's step mom is a mental health worker and her dad is a psychiatric technician so at least she didn't have to explain anything.  Later that night Sophia's step mom posted on Facebook that they had a great time and hoped that it was the first of many play dates.  Phew!  What a relief!

So, that was our week.  We finally got all of the Christmas lights down and dad got a really cool new bike (Thanx Nana!), and we're ready for the new week ahead.  On Monday we get to go to the Shook's house and we're very excited to wish Penelope a happy belated birthday and to have a blast.  Check back in next week to see how Nixi's blood draw went........

xoxo

Safi

Great week, rough weekend.  I'll start with the fun stuff.

New Year's...we had quite the celebration!  Mom, Safi, and I went and got lots of fun stuff to ring in the New Year while dad was at work.  We had poppers, streamer crackers, horns, hats, and cupcakes!  It was awesome!  We didn't stay up until midnight, we were too tired from all of the partying we did during the afternoon!  Dad had New Year's day off so we all hung out and played video games and ate ham.  It was fun.

On Wednesday we mom took us to Boingo's, an indoor bounce house play area.  It was sooo fun.  Safi and I were extremely brave and by the end we were going down the HUGE slide on our own, before that we were borrowing courage from some big girls that were helping us.  We climbed, bounced, slid, and laughed until we could move no more.  A really good time.

On Thursday we got to go to to ImagineU, an interactive kid's museum, with our friends Logan, Zoey, and Josh.  It was the best!!  I LOVED playing grocery store and piling my grocery cart as full as I could get it.  Safi loved dressing up in a princess dress and playing bongos and singing on the stage.  It was super fun and we were able to experiment with everything from gravity and electricity to digging for fossils and putting on a puppet show.  A really great time!

Friday mom woke up not feeling so hot and by mid morning she was super sick.  She pulled it together to take us to Burger King to play but it was dicey and just got worse as the day progressed.  Saturday Safi woke up with a nasty cold that seemed to immediately go to her lungs.  Not sure if she's going to make it to school on Monday, which would be heartbreaking for her.  Fingers crossed she has no fever and is in a good mood.

So far I'm not sick and that's a very good thing!  I'm hoping to make a seamless transition back to school on Tuesday.  I've been doing a lot better lately, only seeing and hearing scary stuff at night again.  I'm a little confused lately and some pretty strange ideas, like that I have three mommies.  They are kinda creepy looking with really big eyes and warped faces and they're scared of me.  That makes me sad.  I know it sounds strange, but its just what I think.  I also think that I've had conversations with daddy that he says we never had.  That's confusing for us both.  So, we're all just trying to understand each other and keep a cool head.  Not always easy when I get mentally tired really easy these days and just poop out or get really upset.  We're all doing the best we can, and its a lot better than when I have things bothering all day and night so it could be, and has been, worse.

So, wish us luck on our transition back to school and make sure to check back in next week to see how everyone is feeling and how it all played out!

Peace
Nixi

ImagineU:


Happy New Year!


Boingo's...