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..