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.

[A]lways [U]nique [T]otally [I]ntelligent [S]ometimes [M]ysterious

Two weeks from today our oldest

will begin Kindergarten.

EEK!

Less than 3 weeks and our Bitty will begin

another year of preschool.

I haven't even gotten around

to getting our DD enrolled

in preschool.

I need to do that,

if he is to go where we choose they

will have space for him.

Our Bitty goes to his Developmental Pediatrician

this week.

We just check in with him a couple times

a year to address in possible concerns

and to monitor his

progress

from all aspects.

You know, he see's an Occupational Therapist,

Speech Pathologist , Geneticist

and when school starts

he seen another OT and SLP.

We also had our amazing speech pathologist

recommend another specialist, an RDI

Therapist.

She thinks he would benefit greatly from

one.

We haven't even begun to look into it all.

I did a bit of research on what that professional's

goals/purpose of sessions are.

It sounds like a good option.

But with Bitty the change must be slow

and

expect regression

and

mass amounts of frustration.

Like hours, seriously, hours a day of it.

Our Bitty has made leaps and bounds.

This month marks 2 years since his

first diagnosis of Autism.

I had known for a while something

wasn't right.

That black cloud feeling following me everywhere

I went.

He also slipped away so slowly (regression)

we did not “notice”

or

perhaps it was denial.

Who knows.

It doesn't matter.

What matters was actually

acting on what needed to be done to

help him thrive

and

be a happier child.

And

that has been

and

will continue to be done.

As is for all Children,

he just needs some extra

help to do so.

Yes, I want to post all about him.

As we are impressed and happy with all our

Boys do.

I just like to mention Bitty.

Reasons, it's been two years of

extreme hard work, over 2 years of

“torture” (fits lasting 4-6 hours a day on bad days),

odd stares, extra “tips” from strangers,

and

there is so much more but my brain will not

bring the thoughts to where I can type them.

Oh yes, of COURSE because

coming in October is the Fundraiser for the Autism Society

of NC.

We missed it the first year, but did it last year

and

will continue to do it every year as long as we live.

This image they posted also reminded me to

write a post about our Bitty.

We do it because it means a lot to us.

It is something we “understand.”

We do it for our Bitty

who even more than our

“typical”(whatever that means) Children

he gives us other ways to

look at the world.

From the Autism Society of NC

Bookstore we bought some books

for the siblings.

Explaining sometimes

what the siblings go through

due to their brother/sister

being on the spectrum.

Both books

also state how

the “typical”
sibling will copy the Spectrum

child as a way of trying to understand

them.

Sometimes that makes a connection between the siblings.
Re-reading the books was nice for me
as I was frustrated at times
that they are copying Bitty's habits.
It was very nice to have the reminder of what that means.
It gave me more patience with the added chaos.

Our Precious Bitty who we would

beg and plead to interact with us

we would almost “chase” him

trying.

Meaning anytime when we would try

he would walk away

and

so we would follow him and try again.

This would be from us Parent's,

Grandparents, Cousins..

you name it,we all did it.

Even going out of our way to have a toy he liked.

Now, he will show us toys.

Or tell us something.

He will stay “close” to us.

He was 4 in April.

He is developmentally 2

with some “perks”

like letters and numbers.

I will find random words he has spelled all over

our home.

He will organize numbers appropriately

from single digits to numbers in the thousands.

He is still in diapers.

Yes, over 4 years of changing diapers for him.

He finally has gained some fine motor skills.

He has just over the summer

began to have a good chance of turning door knob

and actually

opening a door!
(this is good and bad at times..)

He also has gained the strength to unlock and lock the deadbolt

and also the

door knob lock!

Our Bitty is still capable at memorizing books

of all kinds, movie scripts

and

from Baby Einstein videos

learned more sign language from the DVD

than all of the therapists

combined have tried.

If you look into research it will tell you they learn better

from robots than people.

You also hear about people “losing' the

diagnosis.
The research showsthey
 “lose” it because

after the years of therapy

and

hard work

they can mask their difficulties and cope

well enough.

So, no true “losing” of it,
 they are still

who they have always been

just learned to
 “fit into society” better.

Summer for Bitty has been rough, minimal “structure”

as in no way to “know” what the day has in store

We began bringing him back to Church.

He has done well enough.

He will do some fits but I can quickly calm him with

joint compressions.

He also once he gets done he goes limp

and

will find some lights to stare at.

We have had multiple people after Mass

comment on our Children.

THANKFULLY, all nicely.

But these people go out of the way to tell us it.

One day one women assumed Logan was 2

 (as most people think Daniel and him are twins)

I smiled and said, “No, he's 4, he just has some 

special needs which is why he is throwing the fit.”

She says,

 “Well, he doesn't look like he has special needs.”

Wow! I was taken back.

This I have heard a bit.

He doesn't have a “Look” about him

well, if you watch him you will see some..

lets say “quirks”

but, yes

he has special needs

and

doesn't have an

“obvious look".

I can only assume that

she thinks his face should

look “different”

but alas,

you never know who has what.

Just because someone doesn't “look” one way

and

just because you may think

they “look” a certain way,

doesn't mean you are right. 

There will be some hopefully

helpful posts

or 

give some understanding

of 

what it is like to

have Autism in your daily life. 

This will all be leading up to 

the Autism 5K in October. 

It is just around the corner

with how fast time seems to go!

My goal is to get a few more Autism based posts in.
Let's hope I can meet it!

Room with a View

So, yes, Andrew posted in on Facebook but

 I thought I would share it here. 

We got a room with a view on Monday. 

I am talking to Nurse #2 when he snapped the shot

hence the funny posture

Mon-Wed in a Novel

Alright, so it is Wednesday.

My days are all jumbled this week

probably from a “lack” of routine.

Meaning, Monday was almost 5 hours a Duke

6 including the time to get there and home.

I missed Boot Camp that night

(HUGE routine change :) )

Since then the days are blurs.

Tuesday was relatively typical.

I guess it was just Monday that scrambled me.

The Boys are being good with lunch so I am taking the time

to type up a post.

The Boys are doing pretty well this week.

A day when someone babysits

and

we are gone like that.

The Boys dive back into the March time period.

Daniel goes to bed screaming, “My Momma, My Momma, MOMMMMAAA!!”

It doesn't matter even if I am the one to put him down or not.

It's the same.

He cries for 45 minutes.

I can go in there and he will refuse to sleep

because he is afraid I will leave.

So, we just let him cry it out.

Ugh. This lasted for a couple months

luckily it is just a night or two and then

we get our good bedtime DD back.

Biggun' knew I was going to talk to a doctor.

He asked, “Why is Grandpop babysitting? What are you doing?”

So I keep it generic.

So, Monday morning he was on the verge of tears at any little thing.

Screaming about most things

and

just completely out of sorts.

He's doing better now.

He also asked Andrew right before we left,

“Are you going to Duke?”

So, of course the answer is and was, “Yes.”

So when I go there I get a bracelet each time

and

of course you can only cut them off.

So when I get home, he wants to know why I have it on.

Then later says, “You were at Duke Hospital.”

I said, “How did you know?”

He said, “I don't know.”

Bitty was actually pretty good.

The morning after was touchy.

Every Tuesday morning he has a speech pathologist

who comes to our home to work with him.

He was a tad more particular than normal.

Needing a certain train set up, in the right order

with the right cars

and then

he would comply with her.

At OT in the afternoon he rocked it out!

He did some great things with her!

Which has been hard for him lately.

He for the first time he colored a picture with

minimal help!

Actually an entire picture!

He was pretty spot on at following directions!

Yes, these things may seem small

but are HUGE

for our Bitty Boo.

So, I guess what most want to hear is about

Monday.

It was my first time to get an MRI at the Cancer Center.

I learned a few things.

They have a new computer set up.

So after you check in that staff member is

to print off paperwork to give to the techs in the back.

Over an hour after my appointment time

and

seeing the staff from the back come up

and

tell people they are behind

but never came to me.

I decided to check on it.

Yup, my paperwork was never printed

so the tech staff never knew I was there.

They hauled me back ASAP.

Lesson learned to question much sooner.

I will be getting MRI's there from here on out.

That said by the time I was heading to the MRI it

was already past my appointment time with

my neuro-oncologist

but the radiology staff called up

and let them know I was here but they were running behind.

The people start walking me through the “procedure”

asking me all sorts of questions.

I got the nurse tech doing my IV laughing pretty good.

Then the MRI tech came in.

He was laughing good too.

They start to explain where I should lay,

the headphones,

the cage, etc.

I said, don't worry I have done this a bit.

This is only #5 for the year.

He was like, “Whoa! Seasoned Veteran!”

I am sure some people have probably had more.

So I know it is not much.

Definite change for me though!

They were very good. The IV hurt like a fool.

I think it was just the position of it.

I don't have any bruise though!

That is great!!!

So we then ran up two floors to the

Brain Tumor Clinic.

They nurse said, “Don't even sit down, come on back.”

So, she did vitals,

then took me to another room,

I give more information to nurse 2.

Then we wait for either a neuro-oncology nurse

or the nuero-oncology PA.

We waited and waited.

Then the PA popped in said,

I am running behind the new system is messing me up.

I will be in soon!

We waited a bit longer and he came in.

He thought it was the first time we met

but said, you look familiar

and so we said,

“we met you our first time here.”

Apparently, he doesn't typically do new patient visits.

Then he said, oh yes, I remember it now!

He did a few more tests than normal.

We laughed a bit.

I told him of my disorientation/spacy feeling

and

light sensitivity.

He got a “Hmmm.” Look on his face.

Then he said, after a bit more talking

Dr. Desjardin will be in soon!

Oh yes and he was surprised with what I do at Boot Camp.

Especially, 60 minute classes 3 times a week.

I told him they were just on a local news blog

and he said, 'I have to check that out!”

Then we waited more.

Then he came back in

to ask more questions.

It was at tad odd but

we go from the questions to laughing

about something.

Talking about Dr. Alan Friedman

and

me saying my neurosurgeon studied under him.

I said, “Dr. Grossi.”

And the PA said, 'I KNOW HIM! We ALL know him around here!”

“He is phenomenal!”

I said, “This we know.”

:)

Then he left.

So we waited more for my neuro-oncologist.

She came in with a student also.

Then not long after the PA popped back in too

to give me my paper work they typically give you for check out

and then he stayed.

She said my MRI is brighter due to the new computer system.

But the MRI from May isn't.

Who knows...

She said, “It is stable.”
OK.

Last time she talked with more details about it all.

And end up raving about the awesomeness of Dr. Grossi's

work on my brain.

This time she did not say much about my MRI

and

went onto she saw something in the news last week

that made her think of us.

We again forgot to bring the replica of my brain Andrew made

for Dr. Grossi.

Andrew made 3 copies.

She wants to see it.

So we pulled up pictures but said we will definitely bring one for her to see.

That said, Andrew decided she is awesome too and needs one for herself!

That said, we got back on the Dr. Grossi topic.

The student was laughing pretty good.

So she got to witness Dr. Desjardin, Cheshire the PA and Andrew and

go on about how freaking awesome he is.

The PA told us earlier also,”Everyone around here knows who he is.”

This I know because Dr. Grossi always told us

from Day 1 he was discussing my MRI's with the

people over there.

Anyways, so September with be my next one.

It was a definite different environment

this time.

Seeing it was only our 3^rd time there I don't know

what really it was.

But Andrew agrees with me it felt like something was up.

So to the back of the brain it goes for a month.

There will be anticipation the few weeks before the next appointments

but until then we got things here to do!

The wonderfully crazy and wild

awesome little men we have.

Getting things ready for Aidan starting kindergarten!

And of course having our home on the market!

Never dull

and

I am supremely light sensitive today

with

the off disoriented/spacy feeling

no migraines though!

OH yes that said,

I finally asked about why I was told to stay off of Advil.

Apparently, after brain surgery if you take Advil

you have a higher chance of a brain bleed.

One that they don't want me to take.

That said, those migraines better stay the heck away!

I can handle the headaches that I get

(more often then I prefer) but they are NOTHING

compared to the migraines!

And yes, the uterine biopsy I was told

by a nurse was, “Normal.”
A couple days later the OB-GYN called me

and gave me “options” of what we could try

addressing issues I have had with that from day 1

and not the issues I went to him for.

He started with “Your biopsy was normal.” A few minutes into

the phone call he said, “It was MOSTLY normal.”

What?!

I did not ask. I did not want to deal with it.

I need to call back and ask why he said that.

I have been told something like that before when there truly was an issue seen.

So, I was told to call back in a month or two

and

check in with him.

I will ask then.

Just will probably call on the sooner side.

Anyways, some Sweet Little Men need me

and

I want to have some fun with them

and

their Amazing Daddy,

my Wonderful Husband.

Oh yes and I should have PLENTY of energy to burn for
Boot Camp tomorrow morning!

A group of recent photos

L-R:
1. Aidan reading the Little's "The Very Hungry Caterpillar"
2.Bitty chasing/eyeing up one of his balancing structures
3. A positive attempt at breading some chicken that
no one is sensitive too
4. Bitty sporting his chocolate ice cream mustache
5. Aidan posing with his mango lemonade popsicle that we make
6. DD with his drip plate and popsicle after going down the slide..

Our Summer..

I have been a bit quiet on here.

Trying to find time to post.

But once the Boys get to bed

sometimes I am done too.

Or

If I try to write during the day

I don't want to miss my time with them.

Things have been on and off hard lately.

It is the ebb and flow of life!

Keep on truckin'!

Just some challenges with extreme criticism

due to a crazy 2013 so far

for a large portion of our Family.

Family..as in the extended Family too.

Some years are just like that and we keep moving on.

The weekend after VBS we celebrated my local Grandparent's 82 Birthdays.

My Grandpa's birthday is in April and all of our Family

did not get together like we usually do.

So, when my Grandma's birthday came

we celebrated both of theirs.

That said, I still have all 4 Grandparents!

All of them are now 82.

My Grandpa in Ohio will start the turn in

November, he will be 83, then my Grandma, his wife will be in

February, then my Grandparents here in NC are like I said before

April, then June.

Our Family is so incredibly lucky!

I know it has been a hard year for us all

but for us all to still be here together

is a blessing for sure!

All the crazy included. :)
So lucky,

My Grandparent's here in NC (my Mom's)
have 6 Grandchildren and 6 Great Grandchildren.

My Grandparent's in Ohio (my Dad's)

have 5 Grandchildren

and

10 Great Grandchildren.

Like I said, a blessing!!

Then all of a sudden it was July.

Of course, I wrote about he 4^th.

I have a few photos on here now.

Still need to upload the videos to You Tube.

Aidan in a nut shell.  Drawing, using some of the "Little's Legos" and his trial run for the 4th

The weekend after the 4^th we headed down to the coast.

My Parents have recently bought a boat.

A dream come true for them.

So we spent two days on the boat with them.

First time our Boys have been on a boat.

They did pretty well

and

we would cruise the first part of

the morning and wait for the tide to go out

then head over to a sand bar that shows up

and it's a nice “beach”

for the hours of low tide.

The Boys LOVED it

and

we caught a decent sized hermit crab too.

Bitty loved all the dogs people would bring with them

and

of course one of those days my Brother was

there

and

his pup Jefe boated with us.

It was very nice.

Been keeping it calm, the heat and humidity are in

good force.
Not as bad as some summers.

We have had a TON of rain.

So, that has limited some outside time too.

Must head to bed soon.

Tomorrow is MRI day and Neuro-oncologist appointment.

That said, I haven't done a count down like “normal”

one for sure being that would be a crap ton of

count downs for how long this will continue

and

how often also.

I also have been critiqued on my openness of discussing it.

I was told I am obsessing over it.

You know, it is on my mind.

I do forget it and then all of a sudden I remember it.

It all seems like a dream at times

then I get the nerve regeneration pain

where I had the craniotomy.

Which it is still numb so for it to hurt is strange for me.

Also, sometimes the numbness goes to tingling.

Sometimes the numbness still spreads to my eye.

Other times I forget I have it but rub my head

and

well, it's numb

or

I hit the scar and think,

“Man! I have some zits there!”

Then realize, they are not zits, I am touching my scar.

Or I pull my hair back without thinking

and you can see the area where the hair is different.
That said, I notice it because it is not how my hair used to be

people who don't know otherwise wouldn't have a clue.

That said, it really isn't bad. My hair there is growing out

and just has a different wave to it.

So when straightening my hair

and it doesn't comply as it used to.

Or I forget something I never would.

Or get an email reminding me of an appointment

or

with new results.

I still get those.

Just a constant.

Oh yes, and the first week of July

the disorientation and extreme light sensitivity came back

as bad as it was in January 2012.  Which is what caused my first EVER MRI 

and tomorrow will be my 8th ever and 5th one this year. 

Some days I don't have quite the energy at times

but it is a TON better and my more “normal” energy days

are more at least to 80% now.

My workouts are getting better too

but again

I use less weight then before

(another reminder)

and

just started being able to run.

I have chose to keep using the lighter hand weights

so I can gain back better with running

and when that gets good

then increase my weights back

to where they were.

I have a plan and modify it as need be.

As what life is.

You have to go with the flow,

fight where you need it

and

know when not to.

So yes, I think about it,

have to budget for appointments

and scans especially with our benefit period starting over soon.

I must think about it

most times not by choice

just by reminders.

I do prefer to be open about it because

I want to be.

I am not scared most days.

That said, I am a tad nervous the last few days.

First time in months.

I don't know why

and

that is OK.

Tomorrow will be here soon!

The Waiting Game

So we are still waiting. 

I was told I would hear the biopsy results this week. 

My OB-GYN is out of town this week

but said

he would make sure someone 

called me when the results came in. 

Then he would call me next week 

and we

shall make a plan. 

So, now we wait to see if the phone rings today

and

if it does, 

is it them?

I think again this is just a lesson in patience 

which

on a lot of days I 

fail miserably at. 

I used to be OK enough

but

when you add 3 kids

and 

constant chaos

of just typical life

I run thin. 

If I do well, then everyone else does well. 

No pressure there, huh?

You know the silly quote, 

"If Momma ain't happy, ain't no body happy."

It really does seem true. 

Be the glue, don' crack 

or everyone

else falls apart. 

I also have 17 days before my 

next MRI 

and visit

with my neuro-oncologist. 

To add to it all, 

I have been having 

the spacy/disoriented feeling

and supreme light 

sensitivity

no migraines at least!

Just over my left eye pain, like before a migraine

but no aura!

I am glad at that, because  a migraine

and 

no advil?

Is a form of torture. 

When I get spacy/disoriented

I bump into door frames.

Perhaps, it's all in my mind.  

You know, I can maybe by 

chance make myself spacy??

I can dream right?

I did not worry much until it has come back.

Then a nagging bit of worry comes. 

Don't worry, there is plenty to keep me busy.

And of course I am typing this while Andrew 

has been at work for an hour now (it's not even 7a)

and 

our Boys still "seem" to be sleeping

since they were up late

last night. 

It was a good night!

In the 5.5 years of having a child

it was the first one

where "fireworks" 

were enjoyed. 

We did have a slight meltdown with our Biggun'

as we got home and neighbors were

shooting some

the poor Kid flew into our house. 

HOWEVER, we used sparklers and Pop Its.

And all 3 LOVED THEM!

Our Biggun' had a trial run earlier this week

and 

did great

and 

it got him excited for last night. 

We got some photos from then. 

And last night I took a few videos.  

One of which I did load to Facebook. 

I got them all to say, "Happy 4th of July!"

Logan did not say it on the video, but

he REALLY did say it!  :)

And our DD (not darling daughter, Daniel D as we sometimes 

call him even though his middle name does not start with a D.)

His version was, "Happy Jefe!"  (Jefe pronounced heff-eh)

Jefe is the name of my brother's dog. 

It made us all laugh. 

Roxy and Cooper were with us at Andrew's Parents house

and 

they chased the Pop Its

like they may catch them. 

Yeah, Cooper won't fetch a ball 

but will 

go after a Pop It?

Needless to say Cooper went inside because our Pup

is on edge on the 4th 

or 

any day fireworks are done in the area. 

Roxy doesn't care. 

Yes, I am updating on our dogs. 

As I was told by my nephew

when he was 3, 

"Aunt Carrie, you can't have dog kids!!"

OH but we do!

Human and dog kids.  :)

I hear a Bitty Boo doing morning babbling!

Gotta go!

Photos and video will be loaded soon (hopefully soon)