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

The dalmation molly (white with black spots), Candice.

Tacky..very pregnant!

We had an ok week.  I'm still in a funk and poor Safi is doing everything she can to try to not let me drag her down.

She had a great week at school.  Mrs. Paggi said she's been doing amazing and even showed some major flexibility with some unscheduled routine changes.  She only struggled once the whole week and it was minor with Safi moving on in a matter of minutes!  On the 12th Safi gets to go n a field trip to the high school's farm and she's really excited.  She asked Heather to go with her and I'm sure theyll have a great time!

I had a pretty good week at school.  We dot to read Halloween stories and make Halloween crafts and I'm super pumped for the pumkpin patch field trip on the 18th.  I'm getting used to my new friends at school but , much like the park lately, I'm having a hard time reading their intentions and I'm also preoccupioed with thoughts that the other kids are going to take my things or harm me.  Mom's been noticing that its been geting way worse so she mentioned it casually to my teacher who confirmed that she nad the aid had just been talking about that and, indeed, it is getting worse.  I just can't seem to shake the paranoia that other kids are out to get me.  Its sucks and its hard to have fun when you're on high alert.

Safi has to go to the dentist on Monday.  Remember three weeks ago when Safi had the HUGE meltdown leaving school?  Well, a wekk or so after she told mom and dad that her tooth was loose.  Mom immediately thought back to the meltdown because she had smashed her face several times into the car window.  However, she and dad thought,      hoped, that maybe she was just losing her first tooth.  Alas, 3 weeks later its loose as ever, her gums are purple, and it shows no signs of coming out naturally.  So, it would appear that she knocked it loose during that meltdown.  She's super bummed because she's goingto be missing school and she has no idea this visit may entail x-rays and actual pulling of the tooth.  Poor sister.  Heather will go with us to help and hopefully things go smoothly.

I have my EEG on Wednesday.  I'm not quite sure what that is and I'm not so sure I'm gonna like it.  I guess they're going to stick all kinds of wires on my head or something.  Sounds kinda fun, for like a minute.  Hopefully I can make through the whole test.  Quite a week ahead.

I am happy to report, though, that we did decorate the heck out of the house and it looks amazing!  We also had two playdates over the weekend.  One with Kameron and Jewel, our friends from Safi's preschool class and one with the Olsen kids.  It was a busy weekend and we had a great time.  Our fish, Rocky, died and that was sad...but we got some new fish and that was awesome!  Safi got two fish she named Candice and Isabella after Phineas & Ferb cartoon characters.  I named my two Hacky and Tacky.  We woke up this morning to baby fish!!!  Candice had babies and it looks like Tacky is due any day now.  We knew Tacky might be pregnant but Candice was a total surprise.  They're super little and super cute and Safi named them Stacey, Jeremy, Perry, Dr. Doof, Balgeet, and Beuford...more characters from the show.  So, with the bad there is good and we move forward.  Wish us luck and check back in next week to see how it all went down!

Peace
Nixi

Ok, mom got her keyboard courtesy of Nana's par amour, Dan.Thank you, Dan!  Let the blog continue!

Sorry Nixi left with a cliff hanger last week about the EEG.  So here's the deal, Nixi has always had some memory issues and loose or tangential speech.  That's always concerned mom but an EEG is a real pain in the head so we've been putting it off.  Well, starting September 5th and lasting a week and a half Nixi was hallucinating.  She began having visual hallucinations of colors, grey falling stars, and eventually shadows that were speaking to her.  It was terrifying for all of us and culminated in her crying and screaming that she wanted to live alone with the pets because she was afraid of mom, dad, and me.  She just lost all touch with reality and was absolutely terrified.  It took mom a couple of hours to get her "back".  That was a few days after mom had taken her to the pediatrician for a referral for an EEG.  These issues could be caused by epilepsy, more specifically occipital epilepsy.  So, she's scheduled for an EEG on October 10th but unless there is an emergency we wont get the results until October 29th as that was the first appointment neurology had.  Mom will call every day hoping for a cancellation because that's a long time to wait to figure this all out.  Nixi is back to her normal goofy self, although she continues to report hallucinations and now is experiencing what are called illusions.  Illusions are when your perception of real objects are skewed, like misinterpreting a shadow as a person or a light bulb as a terrestrial light.  So, the poor kid isn't sure what's real and what's not so its hard for mom and dad to tell what is a hallucination and what is an illusion.  Hopefully we get this all figured out soon.  She's in pretty good spirits and we're trying to keep her stress down so fingers crossed that we don't lose her again.

I'm doing pretty good with school.  Mom met with my principle and the school psychologist about what happened the other week when I was put in the front office crying and alone.  The meeting was strange.  It started out with my principle taking the offensive approach because it was clear that he felt bad about the way things had happened and was defensive.  The best defense is a good offense so he sort of went at home accusing her of giving mixed messages to the school and asking her if she always did everything perfect.  Mom did a great job of not tearing into him, though she wanted to.  Instead, she let him rail on for 20 minutes and then refocused him back the issue at hand.  Once she was able to chink his armor the truth came out which was that the school doesn't know what they're doing and they know they made some mistakes and felt badly about it.  Mom assured him that it was ok to make mistakes and that she doesn't expect them to be perfect, but she does expect them to ask questions about things they don't know and  that she is still concerned that the supports she's providing the school aren't trickling down to me.  They came up with several plans to help me stay at school and so far its going great.  I'm still have my struggles but I have yet to need to go home and that makes me feel great.  It feels so miserable to feel like a failure and that's exactly how it feel when I have to leave my friends and my class.

Friday at school was one of the days I struggled.  We had a visit from a D.A.R.E. police officer then a student of the month assembly.  I had a rough morning and the principle came to my class to see if I wanted to take a break in his office.  I didn't and I was able to get it together and stay with my friends for all of the excitement.  It was a weird, kinda fun, sometimes scary day but I made it through to the end!  Very proud of myself.  After school mom, dad, and Nixi picked me up and we went to the park and did the fountains.  Dad had the day off...very cool.  Mom and dad even went into the fountains with us in their clothes!  It was so awesome.

Saturday Nix and I both struggled.  I was coming off of the big school day on Friday and Nix was coming down from the excitement of dad being home Friday.  We really wanted to go to McDonalds but it was a no go and we were really disappointed.  We did a great job of pulling it together on Sunday and we got to go.  So it was a great day!

There you have it.  We're super excited for October and get to decorate the house on Monday.  October means decorations, costumes, the pumpkin patch, and special shows...so great!  Hope you all welcome October this week with some spooky decorations and good fun and Nixi will catch you next week!

xoxo
Safi

Here's some pictures from last week of mr playing with my friend, Sophia, from school....

And a really cool big kid who organized a game for all of us to play.....

So, mom has ordered a keyboard for her tablet online but it wont come till the middle of the week so we'll leave you with some video and pictures....ok, no pictures.  Mom's been trying to help me post them and after an hour of trying on the phone and tablet, we're done!  Make sure to check back next week to hear how mom's meeting with Safi's school went last week and to hear why I'm having an EEG done October 10th.
Peace
Nixi

Front yard safari!
http://www.youtube.com/watch?v=3AWEnAx6RXs&sns=em

Man, another rough week.

Nixi had her first field trip and it was marginal.  It was to the country fair like I used to go to when I was in preschool.  She was excited and nervous from he moment she woke up.  Excited about the fair but not really loving the whole idea that the fair would be taking place of the routine school day.  She road the bus like a champ, with mom sitting the seat behind her. Once she got there she was super overstimulated and very anxious, repeatedly asking to follow the visual schedule that they had made in class the week before.  Unfortunately, the guide for the tour was unaware of any schedule AND he kept getting lost so it was a recipe for disaster.  And disaster it was.  She got to pet a sheep and watch a pig take a shower, but those were fleeting moments of joy.  She was on edge and by the time they got to the building showcasing their artwork, it was over.  She noticed that her name tag had fallen off and BOOM, she exploded into a screaming, crying, confused, scared little whirlwind.  Mom got her out of the building, but when she realized that they were to eat their snack at the fair she just started screaming "snacks at school" and it was a good 15 minute meltdown.  She pulled it back together at the end and made it back on the bus with no problems.  Poor kid.  Wish she'd enjoyed it more but proud of her for making it through to the end!

Speaking of making it through to the end...I had a rough end to my week.  Friday was library day at school.  I was anxious about it from the following week but trying really hard to keep it together, too hard it would appear.  My teacher had no clue that I was still anxious so I wasn't given any added visual supports before we went.  We got there and I was totally overwhelmed.  There were soooo many books and it was the first day that we were actually going to check one out.  I was so excited and I was having a hard time deciding on a book.  I picked one and checked it out but when it was time to go I lost it.  I decided I wanted another book, but some kid already had it.  That was really all I needed to tip me over the edge of the cliff on which I was already standing and I fell...hard.  It was my biggest meltdown at school thus far.  Mrs. Paggi couldn't get me to leave the library so she called the principle to come and get me.  I've seen him but I don't know him so I stopped screaming but refused to go the office with him because I didn't feel safe.  They let me pick a friend to go with me and I went.  Mom came to get me and saw me standing alone, crying and shaking, while the principle just stood there looking at me.  The teacher said that they didn't know how to comfort me....so they just did nothing.  It was horrible and really scary.  The ride home was worst than last week and so was my recovery time.  Mom's calling a meeting with the school for next week because the intensity of my meltdowns is increasing and so is the frequency.  Someone's dropping the ball.  Like mom's friend Emily said, " there's a way to defuse a potential bomb, they're just cutting the wrong wires."  Mom and dad are pretty upset but at the end of the day they know i love school so they're more motivated to stop the problem than to kick some butt.....for now.

There's so much more going on but I'm tired and I'm typing this on mom's tablet because the computer died so its slow going to type.  We'll fill you in on the rest next week.

Xoxo
Safi