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