April already?!

April showers, bring May flowers.

How are we already in the fourth month of this year?

A third of the way into 2014!

April is Autism Awareness Month,

now I know as I have been told in the past

every month as multiple things

that the goal is raising awareness

of.

I like to share

ones that are a big part of our

every day life.

And yes, with Autism

my goal is to ping it also

in preparation for the

local 5K fundraiser event.

For this month it also brings

our Bitty's Birthday.

This time has gone so fast

and

he has grown so much.

He also teaches us things on a

daily basis.

Some of the big ones are indeed

helping us maintain patience,

understanding

and

not passing judgment.

Not only for ourselves but towards others.

This is a big thing in our society

for sure.

It sure seems (trying to not be judging)

that everyone is in a hurry,

expects they are owed everything or anything,

mad if they don't get it

and

quick to add their two cents to anyone.

Just think of the days when

you are in your car.

Going the speed limit or maybe a tad over

but this doesn't stop people

from being behind you

way too close

or

throwing their hands up (while tail gating also)

when someone doesn't punch the gas

the moment the light turns green.

(And you will see someone blowing through the most recent light that turned red.)

I used to always be in a hurry

and

some days are later than I want to be

and

it does bug me.

We have appointments to get to,

if you are late you get charged,

if you are late you don't get

as much time.

This is big when you look at it in the eyes

of therapy appointments.

If I am late Logan gets less time

with the wonderful people

who help bring him out of

Loganland.

I don't want to do that to him.

Some days we are just late,

I try to take deep breaths,

I give them a heads up,

I let them know I understand

he will have less time

and

apologize for being late.

Some days it's because

getting myself and others ready is hard.

No matter how early I try,

we still run late.

It could be due to shoes not being what they want,

clothes,

potty battles,

or just

an all around

fit-tastic morning

where one of the kiddos

or

heck some days

me,

having trouble regulating ourselves.

Everyone has an off day on patience

or

focusing to complete a task/goal.

That said for others it is even harder

and

it is fierce.

On those days or moments when things are rough,

a lot of times it is Bitty and his Autism.

He can be really put up a fight.

That said, we are glad he is so small.

We work on helping him grow

and

keep weight on.

He is so small, heck the other day

someone asked if he was 2!!

But, I say if he was the size of our other 2

and

he goes into full meltdown mode

it would be even more difficult to work with.

He has a time limit of being in a crowd/busy playground/outside in bright sun..the list goes on.

He did really well at the 5k the other weekend.

He is almost 5 and we brought the jog stroller.

That is another topic of judgment, we see.

People thinking you are encouraging your Children to be lazy.

When I see or hear people say that I step up

and say, “Things aren't always what they seem.”

That doesn't usually pan out well

but with the goal of

making people aware it should be said.

Not rudely, just matter of factly.

We all at times find ourselves thinking things

the biggest is telling yourself that

it may not be what it seems.

Be kind.

We bring a stroller because Logan

gets over stimulated.

The noise, the crowd,

the idea of mass chaos.

To him he doesn't see the organization,

he needs clear cut lines and boundaries.

Then add anxiety of being near people.

Will they touch me?

Will they be too loud?

Will they smell funny?

The lights are too bright?

And he goes into meltdown mode but that stroller

offers him comfort, seclusion,

it is like blinders for a horse.

The stroller helps him tune out that he is a crowd.

He will shut down

into a blank stare,

he doesn't feel safe in a crowd

but that stroller offers him security to

stay a bit longer (so our other 2 can keep enjoying it)

but we soon

leave just out of respect and kindness of his struggle.

Our Bitty will snuggle,

when he wants to

and his

snuggle is different from most kids.

He will handle crowds

but heck, like at Church

or

even last night watching a movie with us.

He has to sit being only near

one person.

He prefers to be on an end.

End of a pew where he doesn't feel trapped,

or like last

night he sat next to me on the end of the couch.

*Actually, particular enough he prefers to sits only on a far right end *

As in the below image:

Bitty is the star.

He will move around but always comes back to the star location.

It was the first time we all ever have sat down

and

watched a movie together.

Usually our Boys can't sit still and most movies

are watched while on feet,

rocking,

or

literally running around from room to room.

When they do sit,

some are on the floor,

some on the love seat,

some on the couch,

they don't sit and are just in the room

standing.

Last night all 5 of us were on our couch.

Bitty next to an arm rest and me.

We were amazed and snapped photo

but to get all of us in it

I had to move Bitty to my lap.

He did not scream

but in the photo he was not happy

being that close.

And that is just fine.

We got a photo

and

it captured the moment in it's entirety.

We will cherish it forever.

Just a little rambling insight of

what is is like for us

on a few tiny aspects of the

Spectrum.

And how about a "typical" chat with him

that is not started by him.

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

2014 Angels Among Us

I owe this blog some posts

and

have a few sort of typed that I need to add too

just can't find the time. 

I just want to share on here, the Angels Among Us

tab is updated with this years information. 

It is coming at the end of April. 

I want to put the link out to the team page

for anyone interested. 

If you are local and would like to join the team

please do, if you are local and can't make it

or not local, a donation would be extremely appreciated. 

No size too small. 

Every dollar raised goes directly to brain tumor

research. 

Every little bit makes an impact on what they can learn. 

There are some amazing professionals 

working towards a better understanding

and 

finding a cure to those

nasty guys. 

I promise more posts will come..

and 

THANK YOU TO MY HUSBAND 

for his surprise blog bombing.  :)

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.  :)

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.

:)

Smoke alarm on the fritz

So sorry I have been slow to blog.

You know, why keep things calm?!

Whether it's a choice or how things tend to go.

Mostlly, it is how things tend to go

so

if we do get a choice

we don't tend stray from the not crazy

because we would be choosing

the non-norm.

Anyways, yeah, so I have surpassed

2 months to the date since

surgery

and

Wednesday marked 9 weeks.

This week I have hit a lull.

First time in a while I have over done it.

I did not mean to.

REMEMBER, (for the super critical non-constructive ones)

my first and foremost choice is to take care of the
Boys.

That includes, diaper changes, taking them to school, snacks, meals,

groceries, laundry etc.

Once I get the hang of that I will do more.

That said, I have taken a dip back into my

Super Awesome Boot Camp class.

Why?! People may ask,

well, that is how I handle my stress.

Is it easy to handle stressed out kiddos,

Autism tantrums?!

(Have you ever experienced them?!)

It is hard and after hours upon hours of it

you know you sometimes tend to lose your cool

especially if you don't have an outlet.

My outlet is exercise.

The few times I can actually give my brain a break.

I feel revived and ready to start again.

I as have mentioned I am no where near where I was before

with class

AND

that is OK.

I AM OK with that.

AND

THAT IS MOST IMPORTANT!

By going back to class I handle the Boys better,

I am better for Andrew

and

for myself.

Health wise you must find a good

stress outlet.

Bottling it up is not good for your mind or body.

It REALLY can affect all of your bodies systems.

Don't worry I studied for my bachelor's degree on that.

It's not a fake thing, it's true science.

And again why the neuro-oncologists

are pushing for it.

OK, I need to step off my soap box.

Andrew and I had an unplanned trip to Texas.

It was pretty stinking nice.

We really enjoyed it and loved the area.

It was the first time either one of us had been there.

It deserves it's own post

and

I will do that soon.

(Probably after the long deserved Angels Among Us post.)

That said, I missed the Boys.

A break is nice and the Boys

can be a handful

but

we both still want to be with them.

So, you know after all the stress on them with

my surgery and recovery

let's add a trip for us to it!

Talk about some super separation anxiety of these

Sweet Stressed Little Men.

D has hit his limit and was in our bed with us.

(He usually wants ONLY his bed.)

So that was how Sunday night went.

I slept pretty OK

and

Andrew was kicked all night.

Monday, the Boys did well enough.

The older two went to school

and

I chilled out with D.

I also caught up all of our laundry.

Then went to Boot Camp.

I came home pumped with energy.

And had two great friends come over for a surprise visit!

THEN came our typical crazy.

Super early Tuesday morning, I was already in the shower.

The Boys were all woken by one of our smoke alarms.

Yup.

So, when one goes off it makes all the others go off.

We have six in our house.

Well, nothing was smokey it was just one on the fritz.

Don't worry they all got brand new batteries 2 months ago.

Yeah...so it is hard to pin point the fritz one

when they all are going off anywhere from 5 seconds to a minute

you are running like fools comforting the Boys

and trying to see

which one is the culprit.

We read up on it could be insects or dust

on a sensor.
So, first step take them all down and blow them out.

(Thanks to our air compressor.)

Guess what...

it did not work!

And one squealed like a fool

when being cleaned out.

So they would wait 5-20 minutes

in between going off.

Logey also has his Speech Pathologist come in

on Tuesday mornings.

Yes...real helpful for a therapy session!

So by that point it was almost 3 hours of them

randomly going off

and I was

right by the dumb one.

FINALLY!

SO Andrew got it down

and we were good.

Andrew went to work,

I took the Biggun' to school

then

Bitty, D and Me hit up

the home improvement store.

We bought 6 new ones.

You know, if one is on the fritz and you fix it

that pretty much

asks the rest to follow suit.

So we took the initiative to start fresh.

Tuesday's are long days.

Logan has Occupational Therapy in the afternoon.

Lately, their office has been bonkers when we get there.

So, have a stressed out (since we were out of town),

early risen (due to the smoke alarm),

sound sensitive (due to constant alarm sounding) Kid

not to mention his Special Needs

and

put him in the overstimulating (paint and lights)

waiting room,

with it's recent increase in crowds.

He was kind OK at first, a little over stimulated and trying to work with it

then saw his Therapist come out

with her current patient then

step back into the office.

He flipped out. She came quickly back out.

I gave her the short update

and

since she knows him so well

knows the crowd was not helping.

She took him back quick

holding his small flailing self

who ended up kicking

a nearby Boy in the head.

(He was not aiming or aware of the other people, that was just

how stinking crowded it was in there.)

Barely room to move.

I apologized profusely to his Father.

Who thankfully was super nice.

Yes, so D get's no naps on those days

and

is tired.

Etc.

Yes, those are long days and early nights.

Wednesday was a day of needing groceries but

I have signed up to meet

one of my Friends and her Baby Boy

for free play at one of our

local recreation centers.

D LOVED it!!

But that was a long day too.

I had an afternoon appointment also (=no rest) then

you know the Boys wake from nap

and the day continues.

Thursday, we needed all groceries.

I woke early to make the bread we were out of

and I was too tired to make it

the night before.

I took Aidan to school

then

took the Little's on our grocery runs.

I use coupons some but mostly know

the stores have more consistent prices

and the least price

of some of our big ticket items.

So unfortunately I needed to hit 3 stores.

Well, when pushing carts full of groceries with

60 pounds of kids in it.

Yeah..first time I have tried that since surgery.

I usually only go with just D

but it did not work with our plans this week.

So it had to be 2 kids

or

I get up super early to go kid free

or

go super late to be kid free.

Which means less sleep.

So obviously I chose more sleep but

more kid weight.

It was too much for me.

Now I know where I am

and

will more easily remember it

due to my exhaustion level.

Only thing is, Summer is coming up

and

will be taking all 3 Boys!

I make Aidan walk but

everyone once in a while (pre-surgery)

I would let all 3 be in the cart

which takes it to 100+ pounds of Kids.

Yes, that is not gonna happen anytime soon.

Needless to say, I got some help unloading the groceries

and picking Aidan up from school.

I rested but it wasn't enough.

So I went to bed early,

slept all night.

Slept in, and was still exhausted.

I can't even remember right now(today is Saturday)

what I did yesterday morning.

But by lunch time with the Boys I was done.

I called Andrew home.

:(

He took over lunch and got them to nap.

All 3 napped.

I napped 3 hours.

I woke to 3 sleeping Boys at 4:40p. YIKES!

I was still tired but know if I nap too much

I can't sleep at night.

Needless to say, I made dinner.

And could barely get myself up our steep stairs.

Andrew put the Boys to bed and I literally crawled from

our hallway into our bedroom

and

into our bed.

I was asleep before the Kids.

I slept until this morning.

Aidan had a school mate's birthday party to go to.

It was a lot

so here I am this afternoon resting.

I could seriously nap but would rather

just go to bed early.

Or perhaps take a short snooze.

But yes, I knew the party would be too much.

But he is almost done with the school year

and

will miss his school friends as they all

go to a different school next year.

So we all went since if I did not go that

means taking care of 2 littles

and

it is too much for one of us to take all 3 Boys by

ourselves to a museum.

You can lose Logan in a heart beat

and to

find him you have to relinquish your

attention 100% from the other 2.

Just not safe at all.

So, 2 adults are needed to take all Boys

out to a place like that.

Perhaps, after more years it will be

feasible but not

at this moment.

We'll get there though!!

Angels Among Us Post due soon

and

A Texas post which includes some awesome air plane photos.

Yes, an awesome private air show.

SO neat!

AND

some GREAT Family time too!

Our Boys

I am a bit tired today.

But want to touch the base of the Boys.

Tomorrow will be 6 weeks post-op.

They did very well in the first few weeks.

They handled it very well.

OK, well from what I have heard.

Do I have memory of it?

Nope.

Recently, they are having more meltdowns.

Baby D had meltdowns for Me or my Mom.

He would go back and forth on who

he thought he should fuss for.

He has trouble sleeping.

He wakes up screaming, “MOMMMA!”

Then he bawls.

He'll get out of bed and restart his

turtle that is a star night light,

cover himself up

and

whimper/scream (it's a toss up what he chooses to do)

“Momma,Mommy.”

He will sometimes insist that only I do things for him.

Like bath last night,

My Aunt took him upstairs

and

he screamed for me. (He LOVES her.)

So, Andrew and I headed up

he screamed when he saw Andrew

he kept screaming for me.
I was there

but when he saw all of us in there he would keep it up.

Once it was just Andrew and I

he calmed

and was OK.

He had a hard time going to bed.

I had to rock him twice.

(he doesn't like rocking usually)

Then while I couldn't sleep,

I came downstairs at 11p

and

he woke up hysterical again.

I could hear him clear down there.

Now Bitty Boo.

Yup.

Whew.

All transitions are terrible for him.

Anything of us going anywhere.

He follows me around screaming,

dragging my purse

or

holding onto my leg.

Then if he thinks one of his Brother's are

separating he runs after them screaming their name

and

tries to drag them with him.

Then he is afraid my Aunt isn't coming

and

he screams for her too.

He wants us all to stick together.

You need to go upstairs for bed?

He screams bloody murder

and

then you go upstairs and he calms.

This is regression where he used to be

before the years of speech therapy,

occupational therapy

and

structured teaching.

He takes longer to calm now

and

is much easier to set off.

Heaven forbid you are in public

and

he thinks everyone is splitting apart.

It is a massive meltdown.

Now granted he has done this before anyways,

it just comes with the territory of his challenges.

However, they are 10 fold from where they were.

He is constantly stacking blocks, etc

and

chasing them for his visual stimulation

and

his form of organization.

Our Biggun'.

He has done well.

It has really just been the last week it has spiked.

He would get frustrated

at times in the weeks prior

and

stomp his feet,

growl,

bawl up his fists

and

sometimes yell tremendously about something.

It happens with Kids.

Kids are kids.

However, they are happening more at home.

He likes to know what plans are, who is going where,

when will they be home.

Typical for us.

But, Poor Kid.

Yesterday, Andrew went into work early.

I got up with Andrew since I had been in bed since 9p.

Aidan did not get up when he usually does so when

my Aunt went to get Logan she checked on Aidan

and

found him hiding in our bedroom closet

shaking and hiding behind one of my many exercise balls.

We eventually learned from him.

Our Sweet Boy woke up (he's sleeping in our room while my Aunt is here)

and

we were not in bed.

He looked out our closet window

and

saw Andrew's car gone.

He thought Andrew and I had left.

(For any Dr's appointment or surgery

we usually take Andrew's car and leave the van for

our wonderful helpers and of course it holds all car seats.)

He panicked.

After my Aunt found him

he bolted downstairs sobbing.

I heard him and my Aunt gave me a quick low down.

I picked him up

(well I couldn't really pick him up)

I tried

and

quickly moved to the couch

so he could sit on me.

I held him tight while he sobbed on me.

Then told me what he thought.

I wanted to cry with him.

I didn't.

I just told him I am

not going anywhere.

I am here.

Daddy went to work and will be home after work.

I texted Andrew a quick update

and

got back a, “I will come home for lunch today.”

So I let our Biggun' know that.

That helped too

and

made his day when he saw his Daddy.

Andrew came home right before Aidan did from school.

Aidan came running into the house

and

jumped into Andrew's arms.

Right before getting dressed for school

I was upstairs

and

my sweet Aunt got told,

“You can NOT HELP ME!”

“MY MOM CAN, SHE IS NOT SICK ANYMORE!!”

I was taken back by his comment.

I did not tell him I was sick.

I am technically not sick.

I am recovering from surgery.
I did have some rough days,

but

did not use that word.

Who told him that?

Or

Is that his impression?

(I don't think the second.)

He pulled it again this morning.

Actually, all 3 are becoming more

and

more insistent that I am the

one to do things for them.

It's hard.

We aren't mad.

Why?

We all want a tad of normalcy back.

We are all SUPREMELY THANKFUL for

the WONDERFUL SUPER SWEET HELPFUL

Family we have.

But, we all get the Kids view too.

Who thrives on change in your home?

I don't think most do.

They want the same routine

and

the same care takers.

Who doesn't?!

So, here I am trying to rest as much as possible

to be able to do it

after my Aunt heads back home.

She is phenomenal

and

the Boys

love her tremendously.

We all appreciate her help SO much.

But everyone likes to get to their normal groove.

I am sure my Aunt misses her bed

and

her home too.

But I also know she is happy to help

and

do all the wonderful stuff she does for us.

So I better go and you know..do the rest thing

some more.