ADIOS, 2012!!!  WELCOME 2013!!!
A year in review...Safi

Nixi

In all of the winter break and pre-Santa excitement we forgot to write the blog last week!  Too many last minutes preparations for Santa's visit!

So, here's two weeks in a nutshell.  Dad took our first week of break off from work and we went to the park, hung out with the geese, made gingerbread men, and tried to go to the snow.  The snow trip was wash because I got violently car sick on the way up the mountain.  Nixi was a good sport and agreed that we could just hang out at Hospital Rock at the base of the Sequoia's and collect Buckeyes.  After a massive car and me clean up mom saw a family that had just come down the mountain with a bunch of snow on top of their car.  She asked if we could have some of their snow and they obliged so we still got to play with some snow and it was awesome!  Half way back down the mountain I started turning green again so dad pulled over and we collected a bunch of cool rocks.  It was a fun, but exhausting trip.  We went to Flyn and Greer's house to make cookies for Santa and we made a ton so he would have enough to share with his elves.

On Christmas Eve we left out cookies and carrots for Santa and his reindeer.  They must have really liked our goodies because they left us tons of stuff!  Thank you to all of our family for all of the wonderful and thoughtful gifts and cashola!  Our favorite presents were the guitars we got from Santa.  Our Aunt Becky knit us HUGE stuffed animals, too...which was awesome!!  It was just a really great Christmas.  During the week we got to hang out with Logan, Zoey, and Joshy some and we went to the library on Friday and picked lots of great books.  Because we never made it to the snow, mom's friend Emily (mom to Logan, Zoey, and Joshy) and the kids packed a cooler full of snow for us over the weekend when they went up to their grandparent's cabin!!  So, we woke up to the surprise gift of SNOW in our living room this Sunday!!!  We finally got to build our snowman!  THANK YOU Emily and crew!!  You are the BEST!!  All in all its been a really great winter break.  We've got one more week so we're excited to see what mom's got planned for us.

*Note from mom:  Ironically, the last post talked about the natural waxing and waning of symptoms and psychosis.  At the time of that post Nixi's symptoms were waning, or lessening and taking more of a back seat.  Starting a few days before our snow trip Nixi started sleeping poorly.  Sleep, stress, and diet are all major contributors to exacerbation of symptoms.  While Nix did well on the snow trip, Safi being so sick was pretty stressful.  That in combination with trouble sleeping caused Nixi's symptoms to wax, or increase. So, since then we are back to hallucinations during the day as well as night and her paranoia seems to be expanding.  Three times in the past week or so she has believed that there were object other than food in her meals and refused to eat them, not requesting more food but just refusing to eat.  Bones in her rotini pasta, worms in her peanut butter and jelly, etc.  No matter how much I try to reason with her and explore her perception it is to no avail.  At the time, this is her reality and telling her otherwise just encourages her distrust in myself and anyone else who tries to convince her otherwise.  Safi is doing a great job of trying to be supportive of her sister but its hard because sometimes the paranoia is transferred to her or sometimes scary hallucinations are happening around her and, while she doesn't experience them, its darn scary.  So, we're emailing the psychiatrist just to keep him in the loop but otherwise we're just trying to help Nixi feel safe and happy.  She just says everything is scary to her right now.  Poor kid.  We're doing our best and so is she so we now wait for the tide to recede.

Hope everyone had a great Christmas and we wish everyone a New Year filled with hope, laughter, kindness, compassion, understanding, silliness, and love.  We'll catch you in 2013!!!

xoxo
Safi.

Christmas morning!

Snow!!!!

Hip, Hip, Hooray for Christmas Vacation!!  Safi and I are now officially on break for the next three weeks!  Dad took this coming week off so we can go to the snow and try our hand at sledding for the first time and we are PUMPED!  Took one of our sleds out to the park today for a practice run on the grass and it was awesome, though neither Safi nor I like to go fast.  On Saturday we got to visit Santa and tell him what we want for Christmas...I want a big girl guitar with rock stars on it and Safi wants a Phineas and Ferb guitar with Perry the platypus on it.  He said we were very good and that he would make a special note of it on his list.  It was awesome!  Safi was a little star struck but I got over my Santa fear and sat on his lap for pictures.  When we pulled up and saw Santa outside I reminded everyone that we needed to be very brave, and I was!  It was great!

I'm getting ahead of myself.  Ok, so Safi had her Christmas program on Tuesday night and it was great.  It was a lot more crowded than the last program and it was at night so Safi and I were both thrown off a little.  I wanted to go home so dad spent most of the time entertaining me instead of watching the program.  Safi seemed a little distracted and overwhelmed but she did all of the routines and got through the show with a smile on her face.  Success!

I had my preschool Christmas party and mom got to go.  It was ok, a little confusing because they combined my class with the later one...lots of new faces and grown ups.  I made a festive necklace, a gingerbread house, and sang some great songs.  We even clapped so well that Santa, himself, came for a visit!!  When he sat down I couldn't contain myself, blurting out that I want a big girl guitar with rock stars all over it before I could even get near him!  When it was my turn to go up mom could tell I was nervous.  She told me I could give him a high five, and I did.  Then it happened, he reached out to put me on his knee and I did a 180, screaming all the way.  I was not ready for that!  In true A Christmas Story fashion, when mom took me back up a little later to properly tell Santa what I wanted (safely a foot away on mom's knee), I yelled "A candy cane!"  I got the candy cane but blew it in the moment.  So it was very lucky that we got to see him again over the weekend and I took full advantage of my second chance!!  That night mom asked me if I good day at my party and I said no, because I was tired and didn't want to go.  Mom thought about it and apart from hamming it up for the camera and having fun chasing my friends, I really just kind of went through the motions.  She felt sad.  I guess that's just how it goes sometimes.

Safi had a great time wearing PJ's to school on Polar Express day and had a blast on Friday at her class party.  Mom got the numbers of some of her friend's mom's so she can hang out with them over break.  I know she'll love that!

Aaker worked very hard this weekend!  That tiny little elf managed to bring us a GIANT caterpillar climber all the way from the North Pole.  Very impressive!  We also got a Sesamee Street Wii game and a box full of goodies from our Omi.  Christmukkah RULES!!!  Had a great weekend playing with everything and just being with my family.  I'm only hearing voices and seeing things at night this week so things have been simmering down a bit and that's a good thing.  Everyone, me included, is just trying really hard to keep things at an even keel and we're doing a great job.  (Note from mom:  Psychotic disorders naturally exhibit a waxing and waning of symptoms....sometimes symptoms are front and center and at other times they take a back seat, sort of like static.  While this is a normal course, medicated or not, we hope that by keeping Nixi's stress levels down and making her feel supported that we can extend the waning period for as long as possible.  In my research I'm finding that a number of people with these disorders report going for months up to years between their first psychotic break and their next!  Reading lots of memoirs by adults with psychotic disorders and going on tons of message boards to get perspective on the course of their illnesses as well insight into their firsthand experience so we can better understand and help Nix.  Next week I'll try to remember to post a list of some great memoirs as well as some interesting research!)   Looking forward to a great winter break.

So there!  We had a pretty good week and are just feeling really hopeful and excited about what the next few weeks have in store for us!

Peace
Nixi

Get funky, Safi....


Wow!  We must have clapped louder than I thought!

Christmukkah has begun!  Aaker, our elf, brought us a letter from Santa last week and its game on!  Every morning we eargerly run out to look for Aaker and on Saturday we hit pay dirt!  We got new Wii games and some singing holiday toys!  Nixi got a monkey that sings and I got a duck that quacks Jingle Bells!  So funny!  On our Wii we've been taking care of animals at our zoo, helping Diego rescue animals, and helping Santa and Rudolph prepare for Christmas.

It was a pretty good week.  My class and I have practicing hard for our upcoming Christmas program and I am pumped!  Its going to be so awesome!  I know all of my songs and I'm teaching them to Nix.  I'm starting to ask mom if I can invite friends over to the house and during break I may just do that!

Nix has had an ok week.  She had a dicey day at school and seems to be recovering from all of the excitement from the travel last week.  Since Davis confirmed that she has psychotic symptoms mom feel more comfortable asking her about them.  It turns out that Nixi has only been telling us about hallucinations that scare her.  After casually asking her about things when she was not in crisis Nixi revealed that she hears voices and sees things that she believes are "normal", likely because they've been there for awhile and they aren't scary for her.  It appears that the voices and visuals took at scary turn in September when she was really stressed out by my difficulties in school and with her own transition to school.  That kind of the way it typically works with psychosis.  Its quite common for there to be a constant sort of back ground psychosis that amplifies under stress.  So, mom's been working hard at keep her stress down and it seems to be helping.  While she still reports some scary or mean things, overall she seems to be ok with the back ground symptoms and is in a bit of a holding pattern.  Unfortunately, she still struggles with voices and thoughts that I'm saying or doing things to her that I'm not and they turned on Heather, our BIA, one day this week.  I just try to brush it off but it makes me feel bad because I'm not saying mean things to my sister or doing mean things to her and its sad that she thinks I am.  She cries and gets angry and its pretty confusing.  I'm trying to understand and mom's trying to help comfort us both in these situations.

I came down with a wicked tummy ache on Saturday but I'm feeling much better now.  We took it easy over the weekend because the last thing I want is to miss my Christmas performance on Tuesday.  This week will be a fun one with the performance and class parties for both Nixi and I.  Can't wait for the week to get under way.

Hope you all are getting in the spirit and getting ready for visits from Santa.  This really is a magical time of year and so far we're enjoying it to the fullest!  We want to wish Emily a very happy birthday this Monday.  You are so special to us.  You're a second mom to us, a friend, and a little piece of magic yourself.  Happy Birthday!

xoxo,
Safi

A post from MOM....

Hi family and friends.  We had quite a week last week so I'm giving the girls the night off and writing the blog myself.  The week leading up to Nixi and my visit to UC Davis was pretty good.  Had some fun park days, both girls had school...a little dicey for Nixi but great for Safi.  I think we were all on a edge a bit with the impending trip.  So, let's get straight to it and I apologize for any sentence fragments or unclear thoughts.  I just want to get this post done and I have no desire to re read it after I'm finished.

Nix and I left after dinner on Thursday evening.  Once we got out of Fresno County we hit major weather.  Nixi was an absolute trooper, watching a DVD's and just being a wonderful passenger.  Despite the weather we made it there in 3 hours.  Our hotel was really nice and Nixi enjoyed the massive, comfy bed.  She mentioned several times that she missed her daddy and "Faf" and wanted to go home to see her animals but was ok with the fact that we weren't going home.  We had a super rainy day in Sacramento, got lost looking for Target, had one massive meltdown, and got in a nap before heading over to the UC Davis Child and Adolescent Psyciatry Department.  When we arrived for our appointment Nixi promptly said she wanted to leave, as I had anticipated, so I pulled out a hidden assortment of tiny figures and animals and we were Jake again.  Dr. Soulier was wonderful....kind, warm, supportive, and genuine.  Nixi was a good girl and played really nicely with all of the clinic's toys, though she wanted to leave.  Dr. Soulier has diagnosed Nixi with Psychotic Disorder, Not Otherwise Specified pending further data collection to differentiate between Childhood Onset Schizophrenia(COS) and severe Bipolar I with Psychotic Features.  He is leaning more towards COS, but because Nixi is always so moody its hard to tell if her moodiness is a result of coping with her symptoms or if it IS a symptom.  So, we will continue to document and have her school do the same.  He offered some great insights in to Nixi's memory issues, explaining that the disorganized nature of her thoughts makes it difficult for her to properly store and retrieve information.  He also put Autism as a rule out diagnosis because there are a number of her "autistic" qualities that, when looked at in context of the larger picture, may be symptoms of COS and not autism at all.  He was extremely informative and empathic.  We discussed medications.  He said that he felt with absolute certainty that anti psychotics would help with her disorganized thinking, the vague paranoia (but not delusions), and the hallucinations.  He also said that she would gain 8 lbs the first week and within a month about 30-40 lb.  He reviewed what we know about anti psychotics, particularly in children....they mess with insulin production, fatty acids in the brain, the thyroid, etc.  Diabetes, seizures, tardive dyskinesia, etc. are all likely outcomes over time.  So, while the medications would work they would also potentially harm her horribly.  He said all we had to do was say the word and he would prescribe but Mike and I aren't ready to do that...and he thought that was wise.  He's more comfortable medicating at age 5.  It comes down to a quality of life issue.  At this point her quality of life is fair to good.  She hallucinates every day, her general paranoia comes and goes, her disordered thinking is always present.  That said, she is still able to attend and enjoy school for the most part, play at the park most times lately with minimal distress, and function as a family member to varying degrees of success.  There are days when she is floridly psychotic and on those days Mike and I would medicate her, but at this point those days only last 24-36 hrs or so then back to a moderate grade psychosis where we wouldn't medicate.  If the medications weren't so dangerous, we'd medicate her even on her best day because there is no day where she is not psychotic.  But that's just not the reality.  The meds are extremely toxic.  So, Dr. Soulier said that if it gets scary all we have to do is call and he'll call in a prescription to our pharmacy immediately.  He said that because he supervises the clinic he only sees a handful of patients one day a week so he will be available to us pretty much at any time.  He said that from this point forward Nixi is his patient for the long haul and that he will do whatever he can to help us even if that means traveling to us if Nixi requires hospitalization, etc.  He also said that he would help us with those tough decisions.  He said that if things gets scary we are to call him and he'll make the decision if she needs to go to the hospital or urgently medicated so we don't have to.  As far as sleep meds go, Trazadone will put her to sleep but unfortunately there really aren't any meds that are designed to keep you asleep.  So far the melatonin we're giving her in combination with sleeping with the lights on and an adult in the room until she falls asleep and then again when we go to bed is working so we'll stick with that.

We really lucked out finding Dr. Soulier.  He offered to call and personally talk to Nixi's pediatrician, school, etc. and he made a point several times during the appointment to make sure we knew we were not alone in this.  He shared that he has 3 kids of his own so he was invested in helping us help Nixi.  It was a good appointment, if not terribly bittersweet.

After our appointment Nix said she was tired and wanted to go back to the hotel so we decided to stay the extra night.  We ordered in room service and watched Strawberry Shortcake movies.  Nixi traveled exceptionally well and was beyond excited to talk to her sister on the phone Friday night.  Saturday morning we enjoyed our continental breakfast then headed home.  Our trip back was long and rough, with lots of rain and strong winds.  When we finally rolled up Mike and Safi were sitting in chair on the front lawn waiting for us and it was wonderful.  I hugged Safi, who pushed by me and grabbed Nixi giving her a huge hug and a kiss on the eye.  It was so nice.

As the girls ate their lunch together Safi said to Nixi, "Nixi, your head's better now?  There's no scary things?".  Nixi replied, annoyed, "Uh uh."  At nap time I had to try to explain to Safi that even though we drove really far and saw the doctor that Nixi's brain is still different, nothing has changed, and that she's too little for medicine right now.  It was awful.  Awful because its hard to explain to a 5 and a half year old and awful because, regardless of how great Dr. Soulier is and how well the trip went, its true...nothing is different, nothing is better, nothing has changed.  So, we move on.  Dr. Soulier told me to google medical conditions that result in psychotic symptoms, print them out and take them to the pediatrician and ask him to order any tests possible.  He is also reviewing literature and trying to find obscure medical causes because, in his words, "We're already looking at something really rare, like 1 in 6 billion rare so its not crazy to look for the most bizarre possible medical syndrome so we can say we tried everything.  That's what I'd do if it were one of my kids."  So that's the plan.  Now we move forward looking into any non obvious medical cause and trying to find ways to keep Nixi relatively stable until she's old enough to take the risk of medications.

We are overwhelmed, scared, a bit lost and a lot sad.  All we have ever wanted was for our children to live happy lives.  One wouldn't think that could be such a tall order.  We have our work cut out for us.

So that's that.  Make sure to check back in next week when the girls return to the blog and the countdown begin to Safi's school Christmas program and the three week winter break.

Sarah

We had a pretty fun week.  Both Nix and I understood that we had no school so that wasn't an issue.  Mom had a bunch of Thanksgiving related crafts for us to do so by Thursday we were really in the spirit.

Earlier in the week mom took us to the park to go on a leaf hunt at the park.  We found leaves in every shape an color and we used them to make pine cone turkeys!  We collected lots of leaves for feathers, yellow leaves that looked a lot like turkey feet, and bright red leaves for waddles.  They turned out awesome and we had a blast gathering them.  We also went to the new library for the first time and got our own library cards!  We even signed them ourselves!  It was so awesome!  It ended in a nuclear meltdown from Nix which tarnished it a bit but I still was super proud of my library card and the cool books I picked!

I've had a horrible cough for almost two weeks now so mom's going to get me an appointment with the doctor this week.  Late Thanksgiving night when mom was moving Nixi to her big girl bed mom and dad realized that she had a fever.  103.5!  She got a frozen yogurt tube and a fever reducer and by morning her fever was all but gone.  She's still got some residual sniffles but it looks like she's getting much better quickly.

Actual Thanksgiving was cool.  Mom had a list of activities for us to do like make an apple pie, go on a neighborhood leaf hunt, color place mats, make holiday hats, and watch a movie.  I was super in to it...I made an Indian hat and it was the best!  Dad made a pilgrim hat and I lent my girl pilgrim hat from school to mom.  By the time the hats were being made Nixi officially checked out of the holiday spirit.  She kept pleading to go somewhere and when mom said no she begged to start the movie.  She's been doing stuff like that a lot this week and mom thought it might be a sign that she's having an increase in symptoms.  See, when Nixi is distracted her hallucinations, like all who experience hallucinations, are easier to ignore and less distressing.  Mom asked Nixi later if leaving the house or watching a movie makes things "less scary" and she said it did.  So, when she asked to start the movie mom put on Brave and she sat through the whole thing.  She was better after that and that made me happy.  I hate seeing her upset all the time.

We're excited to get back to school this week.  Nixi and mom head up to UC Davis on Thursday night for Nix's Friday appointment.  I think its going to be weird for Nix to be a strange hotel and I know its going to be weird for me to wake up without her and mom.  Dad will take me to school and after school on Friday I'm going to take dad to the library!  I'm excited about that and hopefully mom and Nix will be back later that night.  Nix's appointment isn't until 3pm and Davis is about 3 hrs 40 min away, so mom will see how it goes.  Nix probably isn't going to want to hop on the road right after a 1.5-2hr appointment, but who knows.  Mom booked their hotel room for two days just in case.  I sure hope they get back fast but I'm glad they're going.  Mom told me and Nixi that her and Nix would be going a long ways away to see a doctor to help Nixi feel less scared.  She likes the sound of that and I do, too.  So, hope all goes as it should and Nixi gets help with the things that scare her.

We decorated the outside of our house with Christmas lights and decorations and we put up our tree this weekend.  The place is looking properly cheery!  We also got a Wii!!!!  Mom's one big Black Friday score and we LOVE it!  I'm awesome at shooting games and both Nix and I are great at the dancing games.  Sooo fun!

So that's our week.  Hope you all had a fantastic turkey day.  Make sure to check back in next week to see how Davis went and how we got on with back to school!

xoxo
Safi

Wii love to dance!


Here's the Thanksgiving program that Youtube had trouble with last week...better late than never!

Exciting week for the Seifert crew.  My permanent teacher came back from maternity leave, Nana came for a visit, I had my preschool Thanksgiving Feast, and Safi performed in her kindergarten Thanksgiving program.

The transition from my long term sub, Teacher Jenica, back to Teacher Stephanie went pretty good.  I was anxious but I kept it together and was glad that the aid Teacher Neaomi was still there.  Nana and mom came to my class on Thursday and hung out with me during our Thanksgiving Feast and it was so cool.  I ate three slices of turkey!  It was really fun to show Nana all of the cool things on our playground and she even dug in the sandbox with me to get pretend water.  We had a really fun time and I think I'll do just fine with Teacher Stephanie once I get used to her.

Safi had an AMAZING performance.  She remembered every line and every routine and I clapped my little guts out for her...until I realized that it was more than one song and wanted to leave.  Mom and dad were so proud to see her up there smiling and waving to us all.  It was a really great moment.  When it was all over and Safi was leaving the cafeteria she yelled, "bye Nixi!"  Made me feel really special.  She's not just my big sister, she's kind of my everything.

Nana took us out to dinner at the Olive Garden and it was super fun.  I asked to sit next to Nana and we just had a blast.  As mom and dad had feared, the stress/excitement of the week's happenings along with Nana's visit did cause an increase in some of my scary symptoms.  I had a few rough nights of hallucinating and it was really scary.  So, now dad lays with me until I fall asleep and mom gives me 2 melatonin/chamomile tablets, benadryl, and gripe water.  I'm struggling to sleep through the night, often waking at about 2am and not being able to fall asleep.  I just stare at scary things and wait for daylight and mom and dad and sister to wake up.  Its really no way to live so November 30th can't come soon enough.  I'm hanging in there...we all are.

Safi struggled on the heels of the excitement of the week, having massive meltdowns on Saturday and Sunday.  Hopefully we can regroup and get it back together because this week is Thanksgiving break!

Overall, it was a really great week.  This week will be a little rough because no matter how much structure mom provides,k it wont be our normal school week routine.  Mom's got lots of activities and crafts planned for us to do and hopefully we'll get to spend some time with Emily, Logan, Zoey, and Josh....perhaps we'll hit up the Shooks, too....Julie?

So, enjoy the video of Safi's school program and have a very gobble-iscious Turkey Day!!

Gobble, Gobble!
Nixi

Safi's program...she's in the back row...look from the right starting with the Indians, then pilgrim boys and she is the second pilgrim girls after the boys.  Safi is wearing bright pink jammies and her white pilgrim hat...because it was pajama dress up day.  (You may have to copy and paste the below address as it doesn't seem like Youtube is embedding.)
<iframe width="420" height="315" src="http://www.youtube.com/embed/796hyaSrVhk" frameborder="0" allowfullscreen></iframe>

Ok, so I'm going to start with the best part of the week....my firehouse field trip with my class and dad.

It was so awesome!  I got to spray the fire hose and I did a great job of asking for my head phones when things like sirens and the fire struck engine got too loud.  Dad was super proud of me and he had a great time seeing me hanging out with my friends.  No pictures this time because dad's phone has no camera and mom wanted him to enjoy the trip instead of lugging around a big digital camera.  So, we had an amazing time and I was really excited to get to share my special day with my dad.

Nixi had school pictures and mom dolled her up proper.  She loved her cool dress and purple bow but was a little confused about the whole picture day agenda.  By the time she was up for her turn she was pretty much over it but they got a cute shot.  When it came time for the class picture there was a little boy from the late day class that kept pushing Nix and it was all she needed to go over the edge.  She got really upset, crying and not wanting her teacher to stand next to her.  Mom was trying to calm her down so she could be in the group shot and a mom of another kid in class was laughing at the situation.  Mom told her that she didn't think it was funny that Nixi was upset and asked her to please stop laughing at her.  She did, and mom was able to get Nix together enough to take the picture.  It was really awkward.  You would think that a mom of another special needs kid would understand that its not funny when a child is struggling.  She seemed to think Nixi's adamant rejection of the teacher was funny, likely because Nixi was very verbal about it and her verbal ability is advanced and sounds like a little adult.  Nonetheless, not funny to Nixi, especially because she was aware that she was being laughed at.  So, her and mom were hot to get out of there as soon as the picture was taken.  The rest of the day was a bit dicey but, man, did my kid sister look cute!

On Thursday mom and dad took us to Olive Garden for dinner.  I was expecting lots of flowers and was a little disappointed when the "Garden" was empty, but we had a blast and felt very fancy at a dinner table with wine glasses!  We did a great job and it was a really fun night!

Mom and dad went to my parent teacher conference and Mrs. Paggi said I'm doing great!  I'm proficient in almost all areas that I should be, I just need a little more refinement in the fine motor skills department.  Other than that, I'm rocking this kindergarten thing!  Mom and dad were extremely proud.

Mom went to Nixi's parent teacher conference and she's doing great, too!  She's pretty much where she should be and she's "a joy to work with."  This week her permanent teacher, Teacher Stephanie, comes back from maternity leave.  So, the teacher that Nixi started school with, Teacher Jenica, will be gone.  Luckily, Nixi's made a really good connection with the aid who will still be there.  Mom and dad are hoping the stress of the change along with the upcoming holidays and routine changes don't mess her up too bad.  What we do know is that stress makes Nixi's symptoms worse.  Right now her psychotic symptoms are mostly residual.  She still hallucinates but at a much lesser frequency and intensity and her paranoia about people comes and goes.  She started getting concerned and a little paranoid about her Teacher Jenica last week so this transition might actually be a great thing.  We've been trying our best to keep her stress down and we think the lessening of her symptoms shows we're doing a good job!

Mom called UC Davis and got Nix scheduled for her evaluation November 30th.  Mom and her will drive up the night before and stay in a hotel.  Nix and I have never stayed in a hotel so should be exciting!  I'll be staying home with dad...again, should be exciting!  

We had some great park days with Logan, Zoey, and Josh and we had a Sunday play date with Arlo, Flyn, and Greer at their house.  All were a blast and we're just really lucky to have such fun friends!  Also, as you can tell from the pictures, we bought a ton of new dress up stuff in the Halloween clearance aisle...SCORE!

This week Nana comes to visit and to attend Nixi's Thanksgiving Feast at her school and my Thanksgiving program at my school.  I can't wait to get up there and sing my little guts out!  We've been practicing every day at school and I'm ready!!  Should be a great time!

A special thanks to Dan for buying mom a computer.  The tablet and keyboard thing wasn't cutting it, so we are so grateful for a new computer to write the blog with.  Saves much time and frustration....THANK YOU!

Here's a link to some information in Bipolar Disorder in children.  Again, we aren't sure what's going on with Nix other than that she has symptoms of psychosis so we're reading up on all of the options.

http://www.thebalancedmind.org/learn/library/about-pediatric-bipolar-disorder?page=all

So, have a great week and be ready next week for some great pics and video of Nixi's Turkey Day feast and my school program!

xoxo.

Safi

For the most part, Halloween was terrific.  I got to go to my preschool's special carnival and that was really fun.  It was a little confusing because there were some kids and teachers with really amazing full costumes that covered their faces and everything.  I wasn't scared, I just thought I was in the presence of Spiderman and Wolverine!  I was talking to them and trying to show them things and I was a bit starstruck.  When the teacher took off Wolverine's mask and I saw that it was my friend, I was amazed.  When Spiderman revealed his true self to be Teacher Tia I was flabbergasted!  Such clever costumes!  Batman was also there and he made me a balloon pirate sword.  I ate a snow cone, played in the Spider House (our playground converted), and I won the cupcake walk.  It was really fun.

The rest of the day was dicey for me but I pulled it together in time to go trick or treating with Logan, Zoey, an Josh and it was absolutely the best!!  The Super Seiferts all wore our capes and we just had the best time ringing doorbells, laughing with friends, and gathering treats!  When we got home we had the best time ever handing out candy to trick or treaters.  I was extremely liberal with the candy and the kids loved me!  Before bed we picked our 10 favorite pieces of candy to keep then left the rest out for the Candy Witch!  The next morning our candy was gone and we got witch bucks to spend at Big Lots, a stuffed black kitty, and a PEZ dispenser!  It was so cool!

I had a really rough time going to bed that night.  All of the excitement of the day caught up to me and I was hallucinating big time.  It was terrifying and Safi got upset, crying to mom "Help Nixi, she's scared."  Bittersweet end to a great day...both of us kids crying and the adults not far behind us.  It is quite common for hallucinations to be worse at night when there's less outside stimulation and distractions.  Mom bought me  a projector thing made for babies.  It has soothing sounds and projects one of three different scenes on a wall or whatever.  Its something for me to focus on because for 3 night this week I would just scream and mom would come in and find me staring at the side of a black file cabinet sweating profusely and terrified.  The projector, most of the lights in the room on, and the door open with the hall light plus a dose of Benadryl has made it a little better.  Its hard on everyone.  Its scary for Safi, mom and dad need a break, and I haven't been getting one so they don't either.  Rough stuff.  So that was Halloween.

Mom got ahold of the people at UC Davis and they said they'll see me mid November of early December.  UCLA wasn't taking patients out of their system and the referral that Children's gave mom said they wouldn't see me because I'm too young.  Mom was horrified.  She asked them what she was supposed to do because I'm obviously not too young to be going through this and they said, "Yeah, but she's too young."  Really?!  At least Davis is willing to try to help me.  So, mom and I will be making a trip up there sometime soon, hopefully.

On a positive note, I've had two pretty good days with minimal hallucinations and delusions.    Hoping it stays like this so I can enjoy school picture day and so Safi can have a more mellow week.  She has a firehouse field trip coming up and she's asked dad to go with her so that should be fun.  Mom and dad are trying to keep the stress down, because that's the number one precursor to a worsening of symptoms an it seems like its working pretty good so far.  This is just all really confusing an new to us all so I can't wait to get up to Davis to get this all figured out.

Anyhow, I'm pooped so I'm going to try to get some sleep.  For some reason mom is having a hard time pasting links to web pages that she wanted to include so do an internet search for "autism and schizophrenia" to see the information she's been reading.

Again, we have no idea what's going on with me other than that I'm experiencing symptoms of a psychotic disorder but its interesting to look at the connections between autism and schizophrenia and its implications.

Peace
Nixi

Pretty good week.  I had some fun days at school.  Everyone is getting really excited for Halloween and Nixi and I are no exception.  Mom's been hard at work on our superhero costumes and we're super excited to go trick or treating with our friends Logan, Zoey, and Josh.  On Saturday we went trick or treating as a warm up in the downtown business area where stores were handing out candy.  It was fantastic!  We are SOOOO ready for Halloween!

Mom took Nixi up to Children's Hospital for her EEG results.  The results came back normal so the neurologist said that mom needs to take Nix to a pediatric psychiatrist for evaluation of a psychotic disorder.  His specific concern was childhood onset paranoid schizophrenia.  That knocks the wind out of you, huh?  He paged the hospital's social worker to come talk to mom about a referral for the psychiatrist and to do a sort of bereavement counseling session.  Nixi was getting anxious and wanted to leave, and mom didn't much feel like talking about her feelings so she took the number and they got the heck out of there.  The neurologist is just that, a neurologist.  He's not a psychiatrist so we'll leave the diagnosing up to a psychiatrist.  However, general medical condition has been likely ruled (brain lesion could cause hallucinations but he didn't see any of the other symptoms that go along with that), so what we do know is that Nixi is experiencing symptoms of a psychotic disorder.  The most common misdiagnosis for childhood schizophrenia is autism.  Up until the mid 1970's autism was diagnosed under the schizophrenia umbrella, getting its own separate category as a pervasive developmental disability in 1973.  There is a great deal of overlap in the disorders.  Mom will be posting some information about schizophrenia and autism in the following weeks at the end of our posts so stay tuned for more info.  Mom and dad are also asking that all of our family think back through the family tree for any and all mental health issues, as this information will be crucial in getting an accurate and appropriate diagnosis for Nix.  Psychotic disorders in children are EXTREMELY rare, so family history can help narrow down which disorder it is as they all have slightly different origins and they all need to be treated in a very specific manner.  So an accurate diagnosis is absolutely imperative.  Its not the most pleasant stuff to dredge up but if it help my sister, I think we all need to do whatever wee can.  So, Seifert and Cummings clan...email, call, or send a letter with any information you have about any mental health issues...depression, anyone who took medications, anything.  We really need to rally behind Nix and mom and dad so we can get a handle on what this is and start dealing with it accordingly.  Time is of the essence.  While Autism is not a progressive disorder, the psychotic disorders when diagnosed in children are progressive.  Prognosis and severity are based on age of onset...the younger the onset of symptoms the worse the prognosis/severity.  Nixi is 3 and a half.  Her disorder will continue to worsen...we're just seeing the tip of the iceberg.  So, mom and dad really need to get a handle on things so they can prepare for the worst, hope for the best, and help my little sister.  More info to come in the following weeks.

Have a spooktacular Halloween!
xoxo
Safi

We had a pretty good week.  Safi got a clean bill of health from the doctor and her bottom is feeling much better.  She had a dental hygiene exam at school and lots of other routine changes but she did great.  She's really got this school thing down!

I got to go on a field trip to the pumpkin patch and it was really cool.  I picked a huge green pumpkin and I had a blast playing in the huge boxes of corn.  I'm still struggling to find places where I feel safe and comfortable and I've been having some difficulties at school with hearing noises that nobody else hears.  My teachers are really good about helping me feel safe but its hard when I'm having a hard time knowing what's real and what's not.  I'm getting more and more anxious at home, too.  Mom is teaching me ways to keep my mind off of the things that scare me like noises, voices, and the stuff I see.  She sings to me and taught me how to hum.  It works pretty good, but it doesn't make them go away.  Its hard to be me.  I just want to feel ok and that's getting harder and harder and I know its hard on every around me, too.

Mom got my neurologist appointment moved up to this Friday, the 26th.  Safi doesn't have school so she'll get to hang out with dad while mom and I head up to Children's Hospital.  Hopefully they'll be able to tell us something so we can start figuring out what to do to make me feel better.

We went to our friend Jewel's birthday party this weekend and it was awesome.  She had a princes bounce house and we got cupcakes and nachos.  It was the best.  Safi had a blast playing with Kameron, her old classmate and Jewel's brother, and I had a blast playing with a balloon and a nine iron gold club.  Good times!  During the week we got to play our friends Logan, Zoey, and Josh after school at the park and that was the best.  We have a lot of good friends and that makes us feel really happy and really special.

Mom's working on our Halloween costumes and we're geting really excited to go trick or treating.  Its been a long day so I'm going to bed.  Make sure to check back next week to ses what the neurologist said.

Peace

Nixi

I LOST MY TOOTH!!!!  I really didn't want to go to the dentist or miss school so Sunday night I wiggled and jiggled that sucker in bed and Monday morning I was toothless.  Where there's a will, there's a way.  I got to go to school and I got to put my tooth under the pillow for the tooth fairy.  She brought me a princess snap bracelet and a new toothbrush.  So cool.

The rest of the week was full of bottom drama, as I got a huge cluster of boils called a carbuncle on my butt.  It hurt so bad.  Mom made me a pillow to take to school because sitting was horrible.  The doctor gave me antibiotics and said that if it didn't drain he'd have to lance it on Friday.  I have no idea what that means but mom and dad soaked my bottom like there was no tomorrow and it drained on its own.  I still have to go back to the doctor later this week to make sure its healing well, but it feel a whole lot better.  It made school a little dicey but Mrs. Paggi said all things considered I had an absolutely wonderful week!

Friday I got to go on my first kindergarten field trip and it was AWESOME!  We went to the local high school's farm.  I was a little anxious about going so I asked Heather, my BIA, to go.  Friday morning was rocky.  Nixi was hallucinating and was really freaked out so that was upsetting me but I ended up having the best time ever!!!  My friends and I kept hugging, we played rock paper scissors waiting for the bus, and and I got to plant my own flower seed!  It was great from start to finish and we got back to school in time for lunch on the cafeteria and library time.  Just the dreamiest day ever.

Nix had her EEG on Wednesday.  Mom and dad had to keep her up late and wake her up early so she was pretty loopy.  Mom was afraid she's fall asleep in the car on the way there so she tried to keep her talking.  Once they got there mom forgot that the lab was on the second floor....and they were almost over before they started.  Nix saw the elevators and panicked.  Mom found the stairs but Nix thought mom was trying to trick her onto an elevator.  With lots of coaxing mom got her into the stairwell but Nix freaked out because it was tall and concrete.  She dropped to the ground and fought mom when mom tried to pickher up.  When Nix doesn't want to be picked up because she thinks she's gonna die...you aitn picking Nixi up.  Luckily, a lady came down the stair and distracted her for a second giving mom an opening to grab her, stick her un's about itder her arm like a surfboard and bolt up two flights of stairs.  By the time they go tto the top an into the second floor hallway Nix was saying tshe loved the stairs.  What a weirdo!  The tech who did Nixi's test has a brother with autism so he had great "feel" and he did a great job of understanding where Nix was coming from.  While it started dicey, mom turned her phone video camera on facin gNix so she could watch what the tech, Eric, was doing and that was made everything a lot less scary.  They should have mirrors in that place.  Anyways, she go ther head wrapped like a mummy and completed all of the test.  Eric said she moved a lot nmore than your average kid but he thought the results were interpretable so good deal.  It was draining for all, but its done.

So, crazy, scary, fun, exciting, week here.  This week mom is going to start getting our superhero costumes together and that's about it.  Nice to have a normal week.  That's our story and we're sticking to it!

xoxo
Safi

Nixi's EEG