My 6 week post-op ADD'esque novel based post.

One day over 6 weeks since the craniotomy.

Yesterday we were at Duke

meeting with the Family/Marriage Therapist.

It was good.

Really nice to sit down and talk with someone

non-biased.

We will see her in another two weeks.

(Our choice.)

This morning we took Logan into the Geneticist again.

So, after meeting our Genetic Counselor,

getting the run down.

signing consent,

having our Geneticist come in and talk

all the details behind the test,

Human Genome Exome.

Then back with the Couselor,

then checking out,

getting set up for the lab work

via phlebotomy.

Then waiting, watching people stare at Logan

chasing all around the waiting room,

then launching a lego car

about 6 inches from Andrew

and

watching it shatter after smashing

into Andrew's forehead.

We got called back for

our blood draw.

Andrew's turn,

mine

and

we finished with Bitty's.

Now, we wait for results in 4-6 months

as they filter through 17-20,000 genes

and

we hope to perhaps to find

some answers.

Since it seems we all fit into the

atypical pattern of issues.

Yeah...I could do an whole extra post on that kind of thing

or even type about

really our basic learning

of the need and/or hopefully help of this gene testing.

So the purpose of this post was to touch base on 6 weeks post op.

Yup..take me an entire 1 page of a word

document of typing to get to this point...

Haaaaa.

Yeah.

Can I claim tumor related ADD?

Or

like I said in a video I posted to Facebook

perhaps now it's

ADD/memory due to a hole in my brain??!

I used to be pretty on the ball on

everything

and

then it slowly started to drop.

Blame it on the Kids, stress,

all of the above.

Or

perhaps not.

So, 6 weeks and one day ago

Arnie got kicked out.

Bunk you Arnie.

Don't come back

and

if/when you do

I will stomp you again.

Yes..you suck.

I will win.

I am stubborn, hard headed

and

can be competitive and motivated.

Go Jump off a bridge Arnie!!

Yes. There is a spoonful of my feelings.

As of yesterday I feel I have made it over a

wall of challenge.

I feel like a version of myself.

I know I am not 100%

but actually

feel like I can do some things for the kids.

Last week I started wearing my contacts again.

My eyes weren't so happy.

My left eye still hurts like a foooool

to look up or roll it.

Yeah...since Arnie was putting pressure on my left optic nerve.

I hope it will lessen with time.

I figure so, since I still have some swelling in my left temple area.

My eyes will go blurry sometimes with contacts.

Not sure if I need to see the eye doctor again

or

just more time

and

sometimes they feel like I am looking through a magnifying glass.

Who knows?!

My head is actually not totally hurting

for the first time in 6 weeks too.

BOO YAH!!

Yeah..and I can lean forward with out

a ton of pressure building up in my head.

I can dry my hair after a shower

and

straighten it now

with out having to take a rest.

BOO YAH AGAIN!!

I WILL WIN FOOOOL!

Yes.

The Boys have done great

with the last little bit of me being able to do more.

Again, first goal is,

take care of my Boys.

The Kiddos and my Wonderful Husband.

The house may not be cleaned,

the laundry may be super behind,

but

the hopes of the basics.

Since my Aunt is with us

I was able to nap today

Yeah..I took a two hour nap

and

here I am tired still.

BUT not Exhausted.

Soo,
I will take that.

Once my body gets used to taking care of things here

I am back to Boot Camp Class.

I am so excited!!

Forward steps,

it may be baby steps

AND

I don't care!!

I mean come on, every bit moving forward is

AWESOME!!

I mean again...come on it's like the things

with our Bitty.

He follows a different ruler.

He takes baby steps.

I mean today at his appointment he

asked for a diaper change.

WHAT??!!

Yes, new for us!!

This is forward motion towards potty training

for

our Baby D he will probably be in a a few months

for

Bitty it could be a few months

or in a

year or more

but this is forward progress on it for him.

He is taking us there at

the pace that works for him.

If they both want to do it at the same time

AWESOME!
That would be the first time in 5 years

we could have break from buying diapers.

However, we will probably

have 1 in diapers which would be a break

for the first time in 2.5 years.

Yup and nice to your budget too!

So we shall see.

Again, so baby steps peeps!

They are good!!

It's whether you decide to see it or not.

We decide to.

So yup.

6 WEEKS FOOOOOOOLSSSS!!

Here we are.

I feel kind of like me!

YESSSSSSSSSSSS!!!

Which is great news for all

but

especially all the Boys I live with.

Who ever thought as a Mom

you would live with 4 Boys!

Heck if we had more kids they all would be Boys.

My gut says it.

I don't doubt it.

It's what was meant to be.

I am so grateful for all we have

and

all there is.

I think Andrew is there too.

Good. Just showed him what I typed

I got a nice head nod.

:)

Yes because when I type I

use my nice ear buds

with usually one silly rap song

yeah..

Lil Jon and

the East Side Boyz

and

Ying Yang Twins

Kings of Crunk

“Get Low”

…

inappropriate yes it is.

If you ever saw

Sandra Bullock's movie

“Two Weeks Notice”

and

she danced around a tribal fire

with

Betty White

and

sang her own song.

This was it.

So that is what I think of when I listen

to the not so nice lyrics..

I think of her dancing to it

and

can't wait to start running again

and

using this song as along exercise motivation.

Yup.

Quick post..many more to come

There is so much I want to post about

but

I need lots of rest after today.

Today was a great day.

Amazing, heart touching

and

so many things I cannot describe.

I wanted to update the blog this week

but

did not have the chance.

It was an interesting week.

I was also looking forward to the

Angels Among Us Event today.
That consumed a lot of my energy.

Our team went past our goal!!

The most gargantuan Thank You

to all who donated

and

participated.

The joyous thankfulness

kept me on the verge of tears

a lot this week

and

just a huge sense of being overwhelmed.

I want to donate at least one post

possibly more than one

in regards to it soon.

Team Members who all are from Boot Camp Moms. 

We got quite a few Duke calls this week.

We are now 5 days away from Logan's

genetics test.

Keep your fingers crossed we may

get a few helpful answers.

Andrew and I go to Duke on Wednesday

to meet with the Family Therapist

to get a good baseline.

She was super nice

and

said she can't wait to meet us.

She said she is excited to talk to us

with how I described how

we are and our outlook/view among things.

I also got a phone call from the Child Life Specialist too.

It was just for more background

and

how things are going.

Another entire post of how that is going

on good and not so good days

for the Sweet sometimes rotten

Little Ones.

Frustrating/hard on us but completely

understandable to

that things have changed

and

they just want some normalcy.

Yeah...

I also got another call

and

will be the

neuro-psychologist to establish a baseline

of my deficits.

Which I can't complain about them

since they have been there

longer than I realized

and

are a tad exaggerated

post-surgery

and

during the tiredness of recovering.

So yes.

So much stuff to say

but I am

up way too late.

I need to fix my hair

so it will be easier to do

tomorrow in the morning for
Church.

I will meet with my super awesome neurosurgeon,

Dr. Grossi in 10 days.

I also have one month to the date

my next MRI

and

visit with my nice neuro-oncologist, Dr. Desjardin.

 

Determination

So it's 1am.

Yup.

I began a nice migraine today.

All the nice flashy vision.

Then the terrible nausea

and

pain.

I finally fell asleep for

about 4 hours.

Now..here I am.

My Poor Husband is sick a dog.

It started after dinner.

There is nothing I can do for him.

The floors need vacuumed

downstairs.

I am not supposed to

do it for a while

but

I did it anyways.

Yup.

I made some strong bleach water

and

sprayed down the floors.

Poor Aidan's bowels are still mad.

His bottom is so sore.

Daniel seems OK enough so far.

A little issues but not as bad as Aidan.

Logan seemed to have some sugar issues again.

I forced him to drink some juice

and

he finally perked up.

I have to call the Ped in the morning.

We were supposed to today

but I obviously

lost time with my migraine.

We took a walk around the neighborhood

tonight.

It was hard.

I pushed the stroller some

but had to stop

by the end I was leaning to my right.

I have some balance issues still.

I had to slow down a lot.

I pushed it through.

I am determined.

I sure hope I don't get sick

but

I don't know.

There is a pretty good chance.

We are going to celebrate Easter

sometime mid week.

That way the Kids can be better.

I sure hope so.

I REALLY don't want anyone to get anymore

reinfected.

Nasty nasty illnesses.

I am kind of wired right now.

I had to help Aidan

he got up a few

minutes ago.

He had his explosive issues.

I got him back to bed.

I keep checking on all of the Boys (Andrew too)

I sure hope they all sleep.

I won't really relax

and

will be on edge all night.

On April 20^th there is a 5 K for

Angels Among Us

All of the proceeds go to

The Brain Tumor Center.

My Doc says I can't run it yet.

BUT

I need to pick a good name for the team

and

get it set up.

Any one want to input any ideas would be great.

I REALLY wish I could run.

Who knows maybe I can wing it. :)

Right?!

Determination.

I will keep it.

I keep getting tried with

all the Boys sicknesses.

I will WIN.

I promise.

GO AWAY ILLNESS.

I have some nasty ideas for Arnie..

at least twice a day

I tend to pop out an

nasty name to fuss at him.

I know he is gone but I am

not happy he was there

I know he probably will come back

but I will kick him to the curb every time!

Kicking a$$

I am supposed to get my stitches out tomorrow. 

It will be nice. 

My head is still numb for now. 

Oh well, I just have to be careful using the hair dryer since I can't really feel it on my left side.

Heh..

I hope to go out shopping soon.

I need some clothes. 

I bought some new jeans on sale right before surgery

and since it

I have lost 6 pounds.

My pants are falling off me.

I hope they fit again soon 

but for now

my clothes are too big. 

Ugh. 

I will gain weight back I am sure

when I get to work out again.

I am going to ask more about what I can do.

Dr. Grossi just keeps reminding me

that I will be tired.

He doesn't want me to try too soon 

and 

get frustrated. 

If I had all the money in the world I think

I would just have someone make me 

clothes that fit. 

I am shaped kind of like a teenager. 

Seriously...

it's annoying. 

 But anyways

I am going to get back into running again. 

I want to try and make a goal to run a race a month. 

You know...we have tried for a long time working on 

Total Money Makeover. 

Anyone heard of Dave Ramsey?

We have always worked towards it

 but 

we don't get 

much rolling on it since

we spent a lot of money

on therapy for Logan.

And that is OK. 

We'll keep working on it. 

When we get to no more debt it will be awesome!

Our goal will to always be able 

to make some nice donations

towards all 

things we want to work towards. 

Donations especially for research. 

That's for sure. 

We'll get to give back. 

We don't need anything fancy 

just be able to put a good effort into all

research. 

I really want to race again. 

I really do. 

We'll keep our money 

invested into all the information they can find

 and

understand. 

Autism,  Brain Tumors, Cancer etc. 

You name it.

We're gonna do it. 

If my stupid tumor wants to come back

I am going to kick it's ass. 

I will keep running too. 

It won't win. 

I will make sure it won't. 

I am a little scared 

but it all will work out. 

God is looking out for us  

and 

keeping us near

some amazing Doctors. 

Of all Kinds. 

We have some beautiful Boys. 

They are pretty mad at me too.

They want me to take them to school. 

They pointed it out again today. 

They just want our normalcy back. 

Right now I still can't drive and won't for a while. 

Ugh.

I am on an anti-seizure medicine too. 

They hope to keep it under control 

and 

after a month work it off. 

If they don't put me on it there is a good chance I will have a seizure 

and 

then

I will not be allowed to drive for 6 months!!

The Boys would be really mad at it. 

I don't remember my first few days home. 

Andrew made a few phone calls 

and 

they adjusted my medicine because 

it wasn't treating me well. 

I asked one of the Nurse's what they like. 

I need to decide what we are going to bring to them. 

It will take some weeks

 but start at the 

Neurosurgeon's office, 

then the neuroscience floor, 

pre-op floor, 

to the radiologists too. 

The least I can do it send them something as a Thank you. 

I am also going to write Thank you's to all who have sent cards, flowers, dinners. 

You people have amazed us!

We are so Thankful!

All of this is just so hard to wrap our heads around

but 

there is something so good. 

We're going to figure it out. 

I am going to kick ass and take names. 

Maybe I get to pick out some clothes tonight....Just an outfit or two...