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