Where have we been?

Going crazy?

Very possibly. 

I am eating some chocolate and pretzels and sipping on a beer. 

Yup. 

It has been a while since I posted.  

We as normal have had a lot going on!

We sold our home we built!

After 8 years, we moved across town (nearer to Aidan and Daniel's schools.)

We now have a bigger yard

and

about the same size square footage. (a tad smaller..like 50 sq feet)

We closed on the new home on October 11.  

And the closing of our "old" home was on the 15th. 

We thought a few days overlap would ease the move. 

Hah!

We can dream right?

Here we are still in a mess. 

Supremely disorganized and tired. 

Logan had to go to  a new school since we moved into a 

new county. 

He is doing pretty good. 

The house we bought was empty since April. 

There were a lot of repairs that need to be done

and 

will still need to be done. 

Since it was vacant it was a bit yucky!

Lots of cleaning to do. 

Still not to my liking and soon enough will feel like our dirt. 

That said, it feels like home. 

The other house took almost 8 years to feel like home. 

Funny, huh.

I wake in the morning and don't expect to see our giant

vaulted green bedroom.

I am still not alarmed of the room I see 

just go.  Oh! Funny I did not expect to see the 

bedroom I slept in for 8 years. 

I have never really "moved."

Back in '83 my Parents moved to NC.

They are still in that house. 

My "moves" I remember are going to ECU

and 

marrying Andrew!

Andrew however, has a lot more moves that than under his belt. 

Some he may not remember much. 

His Dad was in the Air Force. 

Well, funny, to say, Andrew

was born in Germany.

Yup. 

From Germany, to Virginia, to South Carolina

to North Carolina. 

Yup, he has moved around some.  

We had some great help

and 

our very Thankful for all who helped us.  

In the midst of all of this. 

Logan got an earlier than scheduled call in with his

Geneticist. 

No answers, it turned into he got some weird genes from me. 

Then his Doctor turned to me and it was like

an appointment for me. 

My job is to inform all of my Doctors about this genetic mutation.

It is related to a rare disease called, "Acute Intermittent Porphyria."

My family doctor informed me I need to see a hematologist. 

So, yup. 

Never dull and all has to happen at once!

I don't remember if I ever updated on here.  

I saw my Neuro-oncolgoist in September and am 

able to stretch it to 3 month between visits versus

2 months. 

I will take that. 

As November turned, I was thinking, 

It has been forever since I have seen them!

It does seem like it because I would be prepping myself for

the visit that would be coming. 

SO yes, it feels like forever. 

It turns out to be on the anniversary of my 

MRI last December that scheduled the biopsy. 

That said, I feel like crap in general

and 

am feeling worse about this. 

It seems like a dream. 

At almost 8 months out I really almost think 

it was a bad dream. 

I was perky and positive then. 

I am having a harder time now. 

It is sinking in. 

I try not to let it get the best of me

but 

it is just  a constant reminder. 

It bugs me that it bothers me. 

I want to go run. 

But I am not because I feel like crap. 

But maybe if I run I will feel better?

But if I feel worse, I will have set myself back.

Anyways, I have lost my focus. 

I must make dinner. 

We moved. 

There is a lot going on. 

What's new?!

Our chaos and we keep on truckin'

just hoping to get back to 

my positive me. 

This non-positive me needs to go away and take a 

long walk off a short pier.  

I don't have time for her!

Our New Home. Top L-R: Toy room, backyard, kitchen.
Mid L-R: Dining room, stair case, office
Bottom L-R: Foyer, living room and Front

As you can see, stuff not done, no picture on walls yet.
It will come.

Office needs unpacked and organized and all the paper clutter should diminish.  :)

D and Preschool

Daniel has been in preschool for a month now.

Well, today he is having a day off

due to his crazy cough.

He has loved it.

(So it seems.)

His first few days of drop off was a

little teary.

He was a little confused at pick up also.

However, he now goes smiling,

wearing his backpack

and

walks right in with minimal to no

look back!

It is a new preschool for us.

It is much closer to where Aidan goes to school.

So far, we love it.

It seems really good

and

we have been out and about

and

ran into one of his Teachers.

I have a small basic collage of his first day.

L-R, Top to bottom: In the van on the way, an attempt outside of school,
his thought of running out of the room, me leading him in, Big Bro Bitty trying to figure it all out,
Mom and Dad poses and the backpack that was delivered after the first day.

Again, since I have waited so long

my memories are dim.

He smiles and sings

and

when we pass by his school

on a non-school day

he will wave and say,

“Bye School, I see you Tuesday!!”

or

“Bye School! Have good weekend!!”

So, to me this tells me he enjoys it.

The teacher sends daily emails

(of the days they are in school)

and

it has pictures of the kids throughout the day.

We love those emails because

of course at 2 years old

we don't get a play by play of the day.

Well, from our experience with the Biggun'

we barely got that during any preschool

and

are just getting a bit more from Kindergarten.

The photos give us a chance to ask

the right questions

and

possibly get an answer of sorts.

A two year old answer of course,

but that works for us!

DD seems to truly enjoy his preschool

and

I hope time slows some so we can

not miss a beat or memory.

I have been so behind on here..

there is a lot going on..

I got another MRI and met with my neuro-oncologist,

there are some big changes coming for us

hope to get back into a routine

and keeping this updated for all

who are interested

and

coming up this weekend is the

local Autism Society 5k!

I hoped to post about our experience

with Autism and have slacked on that..

I really think I need 36 hours days..

some days for more sleep

but mostly more time to get things done..

Logey's School Year so Far..

A week after Aidan, Logey Joe began his new school year.

He loves his school

He has only had one “full” year of it but

has been with the same teacher twice.

His first school year was only 6 weeks

long due to when he turned 3

and

the school year ended.

Just those short 6 weeks he made dramatic changes

for the better.

He was blessed to have a wonderful teacher

and

supremely wonderful assistants also.

After a full year, he was one of the better students

in class

and
 he was at the bridge of

needing more challenge.

So, for this school year
he has moved from
 the supremely structured

Autism only class

to

the Developmentally Delayed class.

So this is where this school year has began.

The first day he was not happy

about the change in routine.

Just as unhappy as he was over the first month or so of

summer due to the change of no school.

Funny, huh?

We tried to get some at home photos

but the poor child due to being told

he was going to school

started melting down.

We took the photo's anyways.

I mean it does capture what is the moment.

We knew he would be happy eventually

and

he prefers to “know” what will happen.

(ie: school classroom daily routine)

He happily walked to class.

We told him he would be in a new class.

He smiled and said, “Hi!”

to his teachers from last year.

His new class is directly across the hall from them.

They are some amazing women.

They saw him and exclaimed how much

he has grown.

They smile with their entire face

when they see their students.

He walked right into the new class

and

seemed OK.

(He had already been there at Open House night.)
He looked around

and

then started to panic about me leaving him.

Now, it was Andrew, Daniel and I there.

He insisted on holding my hand

and

yelling for me.

His (yet another) wonderful new teacher

let us sit with him for a bit

and

then we came to the

“ripping of the band aid”
time.

She took him and he screamed..

He screamed his wonderful (that is sarcasm there) words

The fit he evolved to this summer.

“I NEEEEEED HELLLLLLLP!!!”

Yes, so we left.

We could still hear him as we

turned into the next hall way.

Yes, he was easily heard over the chaos noise of the

first day of school of parents,

students, teachers.

They said he did pretty good.

A few weeks into this year he loves it.

On days when he is not at school

he will beg to go.

Just the other week I emailed his teacher's

a photo of him wearing his backpack

on a day off.

He had just finished with his In-Home Speech Pathologist

and

made a show for a student that was observing the session.

He started to yell, “I see Cinda!!' At first we all thought he said, “Anna.”
Then he began attacking our coat closet with

panic.

Which that is where we store the backpacks.

I realized he was saying, Cinda.

So..

for the next six hours he screamed

about school,

Miss Cinda and Mr. P

AND

wore the backpack the entire time.

I prepared myself that he would probably go to bed with

it on.

THANKFULLY, he took it off at bed time.

So, yes, from 1:30 pm

until 7:30pm he wore a back pack.

So, he loves it. They say he does really well during Circle

time

and

he actually helps motivate the other Children.

Our Little Logey Joe

is such an amazing little man.

He may test us quite a bit

but always

amazes us for all he can do.

He is an inspiring little man.

We got a call from Duke the other week too.

Mid-November we get to meet back up

with his Geneticist.

One of the best around

and

shall see if anything from

his supremely detailed genetics tests

offers any help or insight

towards his metabolic issues that have

kept us on our toes

and

she has almost mentioned

the possibility of finding

some things that

may help us find other ways to lessen

his difficulties.
And

from the beginning
she mentioned

a good chance of yet another visit with

yet another specialist.

It is not easy

it can really put a huge dent on your budget

but if it helps our child

to function at his best

then we will do the needed things

to help this Gift we were given.

The "order" of how the morning went, minus the last two photos
which I was pretty sure I changed their order..but alas..it seems I did not..or the
computer decided it did not like what I did?

The other Thursday..the beginning of the 6 hours of wearing his backpack

Updates coming...

I have for weeks wanted to post. 

I owe a Logan first day of school post

and

a Daniel first day!!

If I did it sooner I would have more details

but of course 

my details are a little foggy now. 

Not to mention we have some of our typical crazy chaos going. 

Never dull!

More details on that but the Kids will come first. 

I also wanted to do a post last Friday

about 6 months post-op. 

It was seriously Friday the 13th 

and 

I am at half a year post-craniotomy and resection. 

How insane?!

That said, on Monday I go visit my neuro-oncologist after I 

get yet another MRI done. 

Only my 6th one for the year. 

I think...I am trying to remember.  

I seriously just wrote it down. 

Anyways, I need to feed our DD some lunch

but wanted to touch base. 

I PROMISE I will do my best to get more on here soon!

In the mean time..

Kindergarten and a crazy week!

It has been an interesting week.

Overwhelming by far!

Monday-marked 12

years ago when Andrew and I

“officially” started dating.

Tuesday- Our Biggun' went to

his first day (half day with half the class)

of Kindergarten!!

Wednesday-His first full day!

So, yes, 12 years ago..

would I do not think

we ever could have guessed

how these years have gone.

Even if you asked me back then

what I could think

would be the most crazy thing that

could happen.

I know early on,

I thought Andrew could be the one.

I dare not speak it

to him.

Just to myself

and

I think after a few

months I mentioned it to my Mom.

And here we are now.

Since this year has been crazy

I did not register DHR

for preschool when I should have.

That means we came down to just this month

trying to do it.

Needless to say the place where

Aidan went was full!

So instead of being mad,

I can only decide this means

it was not meant to be.

We love it there

but

possibly there is some place

else that will do better for our DHR

and

with great hope that in

January, our Bitty may attend

also.

We have looked at lots of different

schools, even last year

thinking we may try this

new preschool

designed for Children with

special needs.

I researched it for months

and

we went on a tour

still not sure.

This week I spoke to another school

closer to where Aidan is going.

We took a tour

and

it seems to be what we were

hoping for.

So, filling our papers for that etc.

Filling out papers that are sent home

the first week for Aidan. (It's a ton!)

Then on Tuesday get a call from

Bitty's new teacher!

On his IEP we decided with the

information from his Teacher

he should move out of the

rigid, structured Autism only class

into

the mixed Developmentally Delayed class.

Yesterday, I got a call from Aidan's school Nurse

just to remind me of what I need to give her.

I called Bitty's Teacher to confirm his Open House

(which is tonight!!) is walk-in one.

I called the director for D's school

to get a few more things answered that I forgot to ask.

I met with a few other Kindergarten

Mom's to talk.

Figured it is one way to meet them.

While out ran into someone I have known

since middle school

then

did a double take and saw

the WRAL Mom Blogger who

did a post on the AWESOME

Boot Camp Mom's class I go to.

She did a double take also,

since we exercised side by side for an

hour.

I sent her a message later

and

she was like, I KNEW you looked familiar!

I am going through piles and piles of papers.

I have gotten emails from all teachers

on top of the phone calls.

I am marking our calendars so we

hope not to miss anything.

Add the typical house chores to it all too.

We also have Aidan's Open House tonight also!

The Boys are waking on their own now

super early in the morning.

So we are doing super early bed times.

They seem OK for now with the change

in schedule, it is Andrew and I suffering.

:)

Yet again n Parenthood learning

just another new level of exhaustion.

I am doing my darnedness to

keep things straight

this week has by far been the

most processing I feel my brain

has done since March.

I have to rearrange Bitty's therapy

appointments also

and

don't get confused on carpool times!

It may seem silly,

but it sure is

knocking us for a loop!

Oh and of course,

add another showing

on the house while trying

to get just school

stuff organized!

First Day of Kindergarten!

Is he ready?!

Daddy and our Biggun'

DHR popping in with the photo

Bitty enjoying some Chickfila
before we got to see the preschool

DD enjoying Chickfila

                        

A couple different poses while sporting his PE Uniform today!

Parent Advocate?!

Just the other week

Logey had his

every few months check in

with his Developmental Pediatrician.

We got a good one.

We are supremely thankful for that.

As recommended when Logan was receiving

services from our local Infant Toddler Program.

The advice is to take his

IEP (Individualize Education Plan),

notes from his therapists,

information from

other doctors

and

anything else that

may be helpful.

Thankfully, this Pediatrician

has never wanted to

put Bitty on any medications.

He did recommend a

supplement

but no actual medication.

Logan has never given this

professional his attention

until this appointment.

He waited until the end

of the session to approach him

and

lift his shirt

for the Doctor to listen to his heart.

Then he “played” a little with

the Doctor.

He made the Doctor's day.

The appointments

are of him looking over all the

information we bring in

and

talking to me listening to

our concerns

and

telling him what is

going on with Bitty from our view.

I mentioned he has regressed some

but

with great reason behind it.

That there are some big changes

that have happened

and

I know that is why he has regressed.

I had to explain what our changes were

and

so I get to see big bug eyes

and

jaws drop.

The nurse also did that too.

I just smile and keep on.

Our Bitty impresses this man.

We'll take that!

Our Bitty impresses us too.

I know we are biased but

it sure makes us feel good

when others see it too.

He also commented on how

good Aidan is with Bitty.

I said, they have connected on a few

levels and

Aidan tries to understand

what Bitty does.

That said, I mentioned how some

people have questioned if Aidan is on

the Spectrum also.

The Pediatrician laughed and said,

“No, he is not!!

He made eye contact when I

walked in, he kept it while talking”

and went on listing how that is not true.

I smiled and said, “I know.”

Just nice to hear especially

with the critics out there

saying that everyone

wants a “label”
or

people are over diagnosing

Autism.

Due to all the critic voices

when we knew Logan

needed more evaluations.

We went three ways.

People always claim

to get a second opinion.

All 3 of our opinions

confirmed the exact same.

Anyways, after our talk.

He said Bitty doesn't have

to come back

unless he regresses

for unknown reasons.

This Pediatrician

doesn't have to monitor

medications

for him

and

he also says he knows

Logan sees a big list of Doctors

so we can knock one off the list!

I can make an appointment

just to use him as a sounding board.

I use all the therapists as

sounding boards too.

I like to hear multiple professionals

and

the teachers all on the same page.

That is nothing I ever anticipated

and

have been extremely thankful

for this experience.

He also smiled, when I said the

Teachers said Andrew and I should be

Parent Advocates.

He said, “You just made me laugh. I was thinking

the exact same thing! “

I said to him what we said to the Teachers,

“We don't know what we are doing!

How can we help someone else??”

The Pediatrician said,

“It also helps Parents just to know

they are not alone.”

So, here is step one.

I have a ton of things to talk about but

will do it over time

and

only over whelm

any readers little by little.

:)

Understanding, hop into a pair of our shoes

Here is the Carrie novel describing as many aspects

of the public tantrums. 

It was 20 or more minutes, the amount of time it took for us 

to get what we needed at the store 

and 

leave. 

Which at bad points is the only way to 

really stop the fit. 

It does take him 

a while to calm

so at times

he may be over it

but the calming takes some time

these are things you learn after watching

closely after over 2 years of these tantrums.

The other weekend we went to BJ's.

Logan HATES BJ's.

I typically go during the week

when it is less crowded

and

get the giant shopping cart

with the plastic car

attached to it.

He loves the car cart.

I see a germ fest.

But, he will “chase” the straps,

(he likes the visual of items with a tether point)

try to watch the car wheels roll,

(they are stickers)

and

spin the steering wheel.

This will distract him from the harsh

lights, give him something

to focus on instead of hearing

the loud music

and

keep him distracted from his

stress he feels in public settings.

Well, we went on a Sunday.

I now know since it is more crowded

they only increase the music volume

to get it over the crowd noise.

That said, they only have like 2 or 3 of the giant car carts.

So none for Logan.

Since he is doing well verbally,

he began flipping out.

Screaming, “Heeelllp! I NEED HEEEEELLLLLP!!”

His volume only increases

and

went to the point his voice was cracking.

He went back in forth on being

rigid

and

then flailing then limp

(a typical fit for him)

all while being strapped in a regular cart.

People look

and

we take deep breaths

and

keep moving.

Hoping he will work it out.

People keep looking, some avoided coming

down an aisle we were in.

One older man in particular started to widely circle us

while staring

and

then

cutting the circle in half

and

circling again.

At this point I got a few kinds of communication

with Logan that

he wanted out of the seat.

He continued to tantrum

and

I knelt on the floor of BJ's

to begin

joint compressions

and

hand hugs.

These are some things

I can do to calm him in

a fit.

I looked the circling man in the eye

and

waved a nice rigid, “HIIII!”

wave.

He then turned

and

walked away

and

no longer circled us.

Logan calmed for a moment

and

insisted on holding my finger

and

then flailed

and

pulled

and

screamed the wonderful words again.

..you know what I mean..

“HELP! I NEED HEEELLLLP!!”

All while dislocating said finger of mine

that he had a death grip on.

I take a deep breath

removed his death grip from

my poor finger.

Of course, since my 2nd surgery he is concerned

with our Family of 5

“splitting”

especially if I get too far from him.

So, at times to not physically

be touching me

panics him.

But still, I hoped

perhaps he may calm when

I got my finger back.

No such luck.

And he continued to

insist holding onto me.

So, I gave him my entire hand

which he kept

trying to get only one finger.

We continued on throughout all of this.

I finally picked him up.

He screamed the same

rigid, flailing, limp and repeat.

A woman I passed, smiled and looked at us

and said, “I remember those days.”

I at over 10 minutes of the intense public fit

I wanted to say, “Actually, no. He's 4 and Autistic.”

But I did not.

There is no point to do that.

She was luckily (for us) just being nice

and

trying to show understood what it was like.

I got to a point where some of the lights

were off

and

just by getting to a less bright place

I got him to calm some.

Only issue is to get out of the store

is to get back in the bright lights.

So it maintains, but he calmed a tad.

Promising home was not helpful.

He was still mad we did not get a certain shopping cart.

At check out, I had to resort to our typical public

“swing” for Bitty.

Meaning, I lean over

and

suspend him away from my body

and

sway him like he is in,

almost a hammock-like swing.

This at the right time will calm him

if you try it too soon he just gets rigid

and

screams more.

But not here,

so

he calms

and

goes to “Logan Land”

(as named 2 years ago, by our oldest Nephew and Niece,

he spent time there instead of with us.

Kids could see it

but not like some adults, they in a way “understood.”)

He was dead weight in my arms,

staring at the lights

in the ceiling

but happy.

At this point our skinny Bit's body

actually let me know he has put on weight!

Because I was feeling the burn!

This is good!

He is 4 and 18 months shorts are just starting to be a little

snug on him.

A little..

and

at times I can get a 24 month pant

to not completely fall off.

He's so little, socks I bought him 2 years ago,

he is still wearing!

I finally had to throw them out!

He wore holes in them!

Right before check out I knew the store had some

sea salt caramels I would like to try.

I don't usually buy candy

but after the show like that...

yeah..I picked up the candy..

I cope with stress mostly by exercise

but after being pregnant with

our DHR I at times tend to

take it out on some junk food after

a bad bout of public tantrums.

My sweet Andrew put away all the groceries while

I strapped the kids in.

He put the chocolates on my seat in the

van so I could whip them open immediately.

And of course share with him!

As he looked at me at one point and said,

“This is the worst public tantrum I have ever seen.

But it is not the worst he has done for you, is it?”

I said, “No, I have had much worse.”

Life is never dull.

We are given challenges.

We are not graceful but try.

We do the best we can.

We are not perfect and never claim to be.

You must keep on truckin'.

There is a glimpse of what one

moment (a long one) us as

Parents of a child on the Spectrum

is like.

There are plenty of good too!

Those are typically seen as us bragging!

Like I have tried to tell some people

who offer negative criticism

about strangers,

things aren't always what they seem.

You do not know their situation.

Try to understand

before you let your mind

jump to what may or may not be.