Life Marches On..

Too much time has passed since the last post.

I have a few entries saved however,

they need some editing.

This will be a post that is not edited,

so I am preemptively apologizing for the

possible lack of flow.

Summer was fun and quick.

We found an awesome pool to join.

Biggun' did swim and tennis

and had a blast.

As always you meet nice and people

and a

few who don't seem so nice.

Overall, we are pleased and happy to join again this year.

Biggun' started first grade

and

has 2 amazing teachers who he adores.

They have blow our minds with

all they do.

Bitty enjoyed the pool over the Summer too.

He was always done by about 1.5 hours at the pool though.

He saw a few big kids he knew there.

OK, well the big kids recognized him.

Thanks to the awesome set up that

the Elementary school

he did Pre-K at had.

He got to eat lunch and spend parts of his day

with the 5^th graders.

We met some really sweet ones at the pool.

It melted our hearts.

Bitty is now doing Transitional Kindergarten

at a great developmental based preschool

that we have eye balled for a few years.

Now since we live so close to it,

it was a simple and easy choice.

He is thriving so well there

and

soon will have his Kindergarten

Screening to see if Aidan's Elementary school

can accommodate his current needs.

D loves all things water.

He begs to go to the pool still.

D began his second year of preschool

and is thoroughly enjoying it.

He really loves it there.

He is in a class of all Boys!!

They are a sweet bunch with

two teachers who are amazing too.

We really have been blessed with amazing teachers

all around for all Boys so far.

D is growing so fast

and

at times we realize

we are forgetting what a typical developing child he is.

From where our “standards” were with Bitty at this age

we are floored

and

blinded sided by

what D does.

He is like his big brother's LOVES numbers, letters and puzzles.

I don't know how many random people comment on how

engineer-like our Boys are.

I smile and nod.

They are like their Daddy.

Funny, how the last post was on the topic of Heaven.

On October 1 our Sweet Goofy Cooper

went to Heaven.

Cooper is January 2009

He had been out of sorts for a while.

I was always afraid I would find him eternally sleeping.

His last month or two on Earth was

going to the Vet

and

me sounding like the crazy lady

who did not agree with what the Vet said.

Things just did not add up.

Needless to say, Andrew talked to the vet office

and

took Cooper in.

It was at a time we both cold not go

so he came home form work.

I did the typical Tuesday rounds of carpool

and

Bitty's appointments with therapists.

The vet did a blood draw on our Sweet older 9 year old Cooper.

The blood draw was a drastic difference than a few months before.

Andrew was by himself

and

got to hear some rough news regarding our precious

Cooper.

Acute Lymphatic Leukemia.

His blood was showing signs of the terrible downhill move.

As in what typically happens is horrible, bleeding out from the lungs.

Our Cooper was also no longer eating.

He was refusing even his most favorite foods.

I went into crazy Dog Mommy mode of cooking

chicken and rice to try and get him to eat.

We always talked about our Pups

and

said we would never worry about Cooper

until he did not eat.

We were there.

He started vomiting.

We had a choice to make.

So, we kept our routine normal the next

day

and

got our Boys to school.

We tried to get a last photo of our two pups but

Roxy wouldn't go near Cooper

and

Cooper wouldn't go near her.

We then took Cooper to the vet for the final time.

We said Good Bye for now.

Then life keeps moving.

Andrew had to go to work

and

I had to go get the Boys from school.

Then we had to have the Heaven

talk with the Boys.

Needless to say, they still ask about our Cooper.

They want us to go get him from Heaven and bring him home

since Cooper is all better now.

Yup.

I hope to post a quick Biggun' and D Birthdays, Christmas and New Years blurb to get some version of caught up.

I then hope to add a few entries of writing I have been sitting on for a while.

Beauty and Blessings

Here is hoping writing helps.

The life roller coaster at it's finest.

Our Boys are doing well.

Super sweet and always impressing us.

Our Biggun' after (not much that much) practice

tied his new laced shoes this morning,

all by himself!!

He is a man who believes you should

be able to do it at try 1.

We emphasize that learning things

take practice

and

with that practice we get better.

He does not always believe us

but

then the point rings true after he

tries the suggested route to get the task done.

He is getting better at using his words when

he is frustrated too instead

of a full blown meltdown.

His self confidence is so much better also!

I know this comes with age

but

with how he started,

he is soaring.

Just this week, we had a school delay due

to icy roads.

So he came with us to Logan's OT appointment.

This is the same OT who worked with Aidan

for a year.

Every time she sees him she can't believe how

big he has grown physically but also

emotionally and sensory too.

Just yesterday morning he said, “Just be happy

to be who you are and not try to be like anyone else.”

YES, our lessons are sinking in!

Our beautiful growing Little Man #1.

Our Bitty is rocking it too.

He has had some blips of regression

but over the last 3 years of therapies

I have noticed the trend

of before another milestone is reached

we have some regression.

He is back to stacking objects BUT

not chasing them.

His words are phenomenal,

his potty training is pretty good,

that does have a constant regression

over weeks but we get over the dip.

He and D really are playing well together.

Very interactive play with each other.

He does not currently do this at school

but even as a 1 year old,

I told others you really have

to show him you are worth it.

He also plays with Biggun' very well too.

All 3 have their “ways” of playing together.

It may not be what works for everyone

but the other 2 know how you get

to play with Bitty.

Bitty is also showing signs of sight reading

and

attempting to figure out word structure.

He is learning to question,

as what his SLP's are working on.

He will spit back the questions to them and us.

It is questions galore!

B-E-A-UTIFUL!

D is just an all around sweet heart.

He is working on boundaries.

He is tantruming like a pro!

He also has so many words to share.

He will actually tell you about his school

day.

Our other 2 never did this at this age, or

not always now.

He will just out of the blue spawn conversation

with Andrew and I

about something he has been thinking on.

He loves books just as the other 2 do.

He will just sit in from of our bookshelves,

pull out book after book reading.

The next thing you know he is surrounded by a pile of books.

He loves himself some outside time.

Dirt and trucks, trucks and dirt.

He loves to build a lot like the other 2,

he just will tweak little parts

and

then observe the structure.

(My thoughts are he is seeing how the tweak changed

the structure..)

He is also super snuggly, at bedtime he say, “MOM!”

then look at me and pat the pillow next to his.

He also will appear in our room

just to climb in bed with us

then talk our ears off. :)

These are some amazing Little Men we were given.  

First Arnieversary of Arnie's Apocalypse..

I had plenty of hopes to get things in order

and

have a post ready for yesterday.

It did not happen.

I want to sit down and update the blog

but don't know when to choose the time.

I don't want to do it with the kiddos running around

(and yet here I am this morning doing it)

or

once they are in bed,

I like to see Andrew

and

by the end of the day

I want to rest my brain.

I never gave the January update

from seeing my Neuro-Oncologist.

But as the saying goes,

“No news is good news!”

Things are clear, well that is how we say it,
the oncologoist and reports say, "stable"
as in Arnie's roots are not growing, 

my “hole” is getting more and more

clear meaning, it

has healed well

and

as she says, “They rest of my brain

is beautiful brain.”

I had some concerns regarding

regressions towards how I was post surgery.

I was becoming exhausted,

not able to to focus

and

especially at the new house,

clip walls, doors, cabinets,

drop things and the list goes on..

What she said makes sense,
I did heal well at our other home,

I had it all nice and organized

and

I knew the home.

She states, brain surgery is comparable to

a traumatic brain injury.

It takes a lot time to adjust to change.

So just by changing our home

I regressed.

I have a huge mess to organize

and

I am always the plan maker

of what needs to be done.

Then the effort to do it takes all of my

energy,

that does not include my typical

Mom duties.

I am back to not being able to pack

Aidan's lunch.

It makes sense, the comparison traumatic brain

injury however, I never thought of it

like that since there were supremely skilled

hands in my brain

and

was told many times by my neuro-oncologist

that it was the best resection she has ever seen!

But of course, skilled hands or not

a brain is not made to have someones hands in it.

:)

It was a good perspective and

helped me to reduce my frustration with it all

a little bit.

She let me decide if I want to come back in 5 months!

That does worry me a little but

it would be nice to spread it out a bit

and

 if I am not comfortable they

will see me sooner.

Just like Dr. Grossi did in 2012

and

when I trusted my gut, that I needed to get in,

I did, he did the MRI and it lead to the biopsy.

So, I am working on it.

Trusting the gut.

Since then I have had some

 bouts of organization

and 

rest.

I have gotten a few things revamped at home

the Boys are doing better with out the extra chaos of

disorganization

and

so am I.

I have had a few down days this week.

I am trying.

I have much more patience when I don't

feel like I have been hit by a truck,

joints aching, shooting pains in my legs and arms,

dizziness and nausea from that nasty spinning feeling.

Which we have had our NC weather going wacky

and I can feel the change.

Heck, even on good days with calm weather, 

 just going down a hill

will cause pressure in my ears to change

and

on bad days my head.

It happens to a lot of people...

So, yesterday was 365 days since the resection.

It does seem like forever ago.

I am not complaining.

I forget about it a lot,

then I hit the scar on my head,

or get the tingling through my scalp

and face,

or that spinning feeling,

or a

lack of strength

or dropping something

I had a bad week the other month.

My peripheral judgement was off,

I got a coffee mug out of the microwave

from reheating it but taking it out

I misjudged the opening of the microwave, slammed

the mug (a gift from our Boys) into the inside edge of the opening

and 

lost my grip 

and 

it

slammed to the floor.

This was after baking 

and 

not being able to judge the

flour scoop to the bowl,

and 

then had a whisk

that kept springing a part.

It was annoying but I carried on..I did get a bit

perturbed with the coffee mug.

But, we must carry on..

this are minor things

but a lot of times are just a tiny mirror

of how Life goes at times.

Annoyances..

Head up and keep on truckin'.

I spent some time yesterday

trying to remember what I could from March 13, 2013.

I have pictures that we took and I know I cracked goofy (or lame)

jokes 

and

 as the pre-op meds kicked in I got goofier.

Taking photos of all of us in the room.
I had the awesome nurses laughing with us.

I don't totally remember saying good bye

but as yesterday went on I remember the man I met

when he was doing further prep..

and 

we talked about kids.

I remember he had a heavy accent 

and

 he talking about placing my

arterial pressure device in my wrist

and

then I next think I remember opening my eye barely in ICU

I remember a blurry male nurse

and

 the window next to the door.

Then I remember being moved onto the neuro floor.

I met the nurse that I had for my biopsy, 

smiled talked to her 

and 

she introduced me to the new nurse taking over.

I remember my post op MRI sort of. 

 Andrew walked beside my bed as they rolled me

to the MRI techs who did 95% of my MRI's before that.

I think I remember him laughing with me

and 

 then they shut down the neuro floor for maintenance

and 

I was moved to another floor.

I met a PT on the neuro floor 

and 

got to practice walking with her

and 

was told to practice.

I remember a few practice walks..

and

that certain hallways smelled odd.

I remember my best friend coming with a burger 

and 

shake for Andrew,

I saw our Aidan, my brother, sister, my Grandma and one of my Uncles(possibly him more than once?).

My Parents were there especially in the day time

and

 one super sunny day where I felt horrible

and 

my neuro-surgeon's PA was there..

I saw my Dad sitting next to me 

and

 I went back to asleep.

What I remember most is the day I got to go home,

Dr. Grossi saw me, told me to go get a shower! 

I could wash my hair,

my face, brush my teeth

but that energy to get clean was a lot.

Andrew had to help me

(not what you think would happen to a 31 and 30 year old,

many people are much older if they have to do this

and we get told we are so young..but it sure doesn't seem like it

at times)

I also couldn't feel part of my face or my head

so since you can't see it

you need help.

I got to get dressed.

Then I said I wanted real food. (Andrew blogged about that)

Then the kind staff made sure before I got in the car

I got an IV dose of zofran so I could make the ride home

without hurling.

I walked in our front door climbed our steep stairs and went straight to bed.

That is the short winded (for me) of my 4 days post op.

What a wild and crazy year..

Top Left, pre op, mid left 24 hours post op (?)
Bottom left  and entire right 365 days post op.

Duke is A-MAZ-ING!!

So glad to be here with my Husband and Boys.

Don't forget, 

2014 Angel's Among Us

Our Baby is 3! Oh My!!

Our Baby is 3!

How on earth did this time pass so quickly?!

Sweet D is doing well.

His words are relatively clear

and

there are many!

We are “shocked” at

how well is words are

and

we tend to say

well our “norm”

was what we went through with Bitty.

Speaking of that.

Daniel and Logan have

quite a little relationship

they go off and play together

and

actually have semi-2 sided

dialogue.

With potty training they cheer each other on.

It is so nice that they are excited for

each other

and

support one another.

Our sweet 3 year old

is mostly happy

and

when not will tell you,

“I am GW-UMPY!!”

In a growly voice.

He has learned to argue.

Him and Logan especially

at times just negate one

another to get the other one

riled up.

If D can get Logan worked up

he really milks it.

So like young siblings do,

they support

each other

but,

also like to

bug each other

at some points.

Daniel loves numbers and letters

like his big brothers.

He has learned a bit of scripting

from them also.

A lot of kids do it.

But then there is the flip to

all they do is script.

(Like Bitty.)

Mentioning he does a little

but that is the way that he

can really interact a lot

with Logan..

the pediatrician asked me,

“Are you concerned he is Autistic?”

And kept bringing it up.

I said, “No, we are not.”

Autism is not a “learned” thing

D's scripting is how he sees

he can play with his Big Bro

the best.

Since we have moved his

food sensitivities are getting worse

I can only imagine

it is due to the fact

we actually have trees and foilage.

The Dr. did not seem too concerned

and

acknowledged even though D

has an alternative diet

we actually

(Again like Bitty)

do our best to give him a

well balanced one.

He kept bringing up

the Autism concern question.

We are pretty good at acknowledging

what we see

and

not sitting in denial

about it.

Our D loves school,

has some friends,

OK..well he will very willingly

tell you about the 2 girls in his class.

(Not sure if this is good or bad for his age...

or will be a flash of what teenage years are like..)

He likes to sing, loves to read

and

at school loves his music class

and

the ability to “play instruments.”

He also LOVES outside.

Some days I think he would sleep

in the backyard if we would let him.

Which to me means some backyard camping

this spring/summer! :)

He loves trucks and being covered in dirt.

Well, only likes to be covered in dirt

that he planned to get dirty with.

He can be covered head to toe in mud

but if his sweet little self

falls into it (even if already dirty)

the accidental dirt sure upsets him.

He is an amazing little man

and

loves to rock his cuteness.

We hear from his Teachers about his

smile for a camera

and

his overall sweet self.

Happy Birthday to our DD!

He did well at his 3 year check up.

Passed all tests

and

comes in at

50^th percentile for height,37.25 inches

and

70^th in weight,33.75 lbs!

Just perfect!!

He was so thrilled for his Birthday.

He loved opening the presents

and

when he thought it took too

long to sing him, “Happy Birthday!”

He started to do it for himself. :)

He is a sweet little independent man

and

at times (which we are eating up)

wants to just sit and snuggle

with us.

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.  :)

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