Cruel

Just a quick note regarding the sometimes seemingly cruel cruel world we live in. 

7 days prior to surgery a list of pain relievers are on the "no-no" list and even for a few days post surgery. 

Well, my dear friend Advil is on that list. 

I came downstairs after we put the Boys to bed last night. 

It was coming all day. 

The beautiful cloudless sunshine day. 

The bright sun shine was killing my eyes.

Yes, since January 2012 my already sensitive eyes now fall victim to photophobia.

This is typically a migraine trigger. 

I came downstairs  last night and then comes the flashing in my eyes.

The aura that I get prior to a migraine. 

I panicked knowing there is no medicine I can take..that I know of. 

I ran around turning off most of our lights. 

I hid in the dark. 

The aura left but there was pain and the increased sensation of smell that comes with a migraine. 

So far, no nausea or severe pain, but the nagging worse than "normal" headache, the smells and the lights are still in force today. 

I guess I'll take it...

We just got home from the Doctors for the Boys.
D has a cold but since his Brother's were dancing down a sketchy path we decided to lump him into the visit.

Aidan has had a cough and cold since Mid February.  It gets better for a day or two, but then comes right back.
He is run down and tired.
The two nights ago I noticed some discharge from his eyes, just a little.

Logan has been on and off fever and runny nose since he went to Duke the last Friday in February.
Yesterday, afternoon I looked at him and his eyes were goopy, tons of discolored discharge and blood shot.

This morning Aidan and Logan were even yuckier.

Aidan has his first ever sinus infection and pink eye.
Logan has lots of cloudy build up in one ear, a sinus infection and pink eye.

They said if D's eyes get goopy just to give them a ring and they will call in a script for him.

Oh yes and I noticed a lump the other week in Logan's diaper area.
In the inguinal crease.  You know right where Boys (most commonly) get hernias.
Don't worry it's just a swollen lymph node probably due to the bug he has had for most of this year.
That on top of no padding to hide it.

Oh yes, and don't worry, it's all really nothing big just seems sometimes like someone is every so often poking you with a stick just to see if you notice.

And on Friday I noticed water marks in our living room coming from the Boys bathroom upstairs.
Yup...they're light, but those issues are now hopefully under control so we should be able to when we have time prime the marks so they are no longer apparent on our ceiling unless we did not fix the real problem...
Hope not!

Let the chaos continue....

Bring it Baby!

Hoping it sticks

We are now at 4 days before surgery. 

It is hard to imagine next week at this time I will have had a craniotomy.

Very weird to say the least..

We are in preparation mode. 

I have pancakes made..well I did.  

I made a double batch on Sunday and there are only 2 left!

I have a double batch of waffles. 

Today, will hopefully include pizza crusts and at least 2 loaves of bread.

You see, I am a fiend about preservatives and knowing what goes into our foods. 

ALSO, it really is a ton cheaper to make it yourself and doesn't take too much time.

In my opinion...

So, I make big batches of waffles, pancakes and pizza crusts so they can be frozen. 

Our Rogers' special of "Eggos" and "Frozen Pizza"

they get eaten up quick too. 

I am hoping for this to make breakfast easier on Andrew and hopefully make sure our supply won't run out too soon. 

I need a good scrub on my fridge because when I am unable to do it, I will think it looks super dirty.

Mopping, bathroom cleaning,clean sheets,laundry, brush the dogs etc. 

On top of all of this I want as much time as I can with the Boys.

Andrew noticed this week that Aidan has his first lose tooth!

We are hoping he loses it before the surgery or after we are home from the Hospital.

That's a big first to miss!
 If I miss it I think I really will cry. 

The Little's seem to be requesting me more for snuggles.
  This is a BIG deal for Logey.
I am trying to eat it all up but also get things done.

This morning I went to my last Boot Camp class for a few months.
The Ladies there are WONDERFUL.
When I started 2 years ago I never would have imagined how great these women are.
They have gone above and beyond to help my Mom and I.
They are generous, kind and are people I feel lucky to be able to have met.
I am going to miss class terribly while I am recovering.
I am looking forward to coming back to class and hoping to take up running again too.

I want to race again.
I used to love it.
Always giving yourself a challenge to face and over come.

I find myself day dreaming more than ever.
I get lost in music a lot too.
Always day dreaming there is a reason for the song or it was played especially for me.
That somehow Someone knew I needed to hear it's message.

I dream of how things could be one day.
What I want to do or teach our Kids to do.

One is to give them no limits on their dreams.
I hope they will have big dreams and hope.
I hope they will believe anything is possible even if they have a tough road at times.
I hope they see it's just a bump or you never know it could be a sink hole,
 but to keep Believing and Trusting that they will get out
and
get out for the better.
It may not seem so at the time but one day it will.

My Dad always dreams big.
You can do anything you want to do.
He always has hope and sometimes crazy dreams.
We may laugh and sigh at what he says.
But he is right, he is oh so right.
Never lose sight of your dreams and if you do, take the time to find where they went.

“And will you succeed?
Yes! You will, indeed!
(98 and 3/4 percent guaranteed.)

KID, YOU'LL MOVE MOUNTAINS!

So...
be your name Buxbaum or Bixby or Bray
or Mordecai Ali Van Allen O'Shea,
you're off to Great Places!
Today is your day!
Your mountain is waiting.
So...get on your way!” 
― Dr. Seuss, Oh, the Places You'll Go!

My Mom and Dad picked out this book and gave one to my Brother when he graduated high school and one for me when I graduated.

I truly love getting to read it to the Boys.
I hope it sticks.

The Best Christmas EVER

So Christmas of 2012 was the BEST EV-ER!!
It seriously was.
Here is a collage of photos.
The Top Right was our Tribute to Andrew's Grandpop Rogers'.

He passed away right before Thanksgiving.
Andrew's Dad brought this bottle of bourbon home to Andrew.  It was in his Grandfather's basement.
So, we put a Santa Hat on it and it sat on our mantle all season.

I hoped it would be an enjoyable Christmas.

Just 3 days before Christmas I had my 3rd MRI of 2012 and scheduled a biopsy.
That was pretty heavy on our minds but did not want to take away from the joy and excitement most Kids have.

Our Kid's however, aren't usually that way.

Obviously, at 2 years and 10 days old D didn't know anything about Christmas.
Logan, had yet to "have" a Christmas yet.
In 2011, Logan stared at everything and had his Christmas excitement about 5 days later.
It was just too much for him on the day of.
Aidan tends to worry and gets himself worked up for a non-routine day.
It usually includes a lot of meltdowns coming up to the day and a complete and utter refusal to participate in the day.
So, we do try to keep it simple and fun but not overwhelming or overstimulating.

This year we made cookies.
(I try to every year, but the last few years have been very difficult to do it.)
I eventually had all 3 helping.
Logan EVEN sprinkled the candy/sugar onto the cookies.
There was a lot of hand flapping  between Logan and Aidan.
It was fun to do it but that pesky stuff sticks to your hands.
That means sugar/candy ALL over the kitchen.
I did not care, they all wanted to help and it made my heart so very happy.

That is the majority of the photos.

The last two are Baby D in his Christmas Tie Shirt and a photo of our tree and mantle.


Santa came.
Santa likes to keep it simple but yet it always seems to be too much stuff in the end.
(We still feel we went overboard.)
I grew up getting something (sometimes only 1 thing) that you really wanted.  It wasn't about the quantity of gifts it was about the quality.
Numbers of presents don't matter, it's the thought and the time put into the gift that does.
We hope to teach the Kids that.

Which could be VERY hard to do in a time where people spend hundreds upon hundreds of dollars on oodles of gifts.

The collage shows Aidan's letter to Santa.
He dictated to Andrew and then signed it. This is the first year we ever left cookies and milk for Santa.

Then we have Aidan's Santa Gifts, Logan's Santa Gifts, Danie'ls, the stockings and the whole outfit together.

As you see the Pups stockings are filled too.  Andrew and I's are empty.  We usually do only stocking gifts for each other but this year did not.  We do get a gift from the Boys though.
Simple and wonderful.
Our house is overflowing with stuff, we don't need more.

Here is a video from the morning.
Logan usually spends the morning dazed and confused.  A
idan grumpy
and
last year Daniel was so excited he got a train in his stocking and showed everyone.
This year was GREAT!

Here is Logan actually reacting to gifts.  We have to give him a little incentive to try and tear them.
 Aidan is a pro unwrapper.
Daniel is learning.
I guess we'll see how much stuck with Logan when his birthday rolls up in less than a month now.
Aidan was excited for everyone.
Daniel was too.
It really was wonderful!




Andrew's Parents and My Parents came over after the Boys opened their gifts from Santa.
They went to nap/rest and we headed over to my Grandparent's house for Christmas late lunch/dinner.
There is no "big" exchange at their house.
We get a couple gifts but every "family" gets theirs as they come in and it really turns into time together instead of presents.
On Boxing Day we headed over to Andrew's Parents house and celebrated with his Parent's.
His Brother was in from out of town and the Boys got more gifts and we had dinner also.

It truly was our best Christmas by far for the Boys.

I can feel it. Yep, it's bad...

Yesterday, I had my MRI and pre-op appointment.  

Radiology was about 20 minutes behind with their MRIs.  

 The tech said the orders looked different so she called my neurosurgeons office to verify what exactly they wanted.  

As it turns out I had a full MRI instead of just the brain lab series.  

So this more than doubled the time the MRI would take.  

She said I get to be the first patient to use their new MRI. 

This one takes super super detailed images.  

She mentioned fibers...  I don't know exactly what it is really called.  I have tried to look it up but no luck.  So they will have a lot of detailed images of all that is going on in my brain.  

Oh yes and one of the techs Simone, has been there for all of my MRIs since May of last year. 

 She remembers me,so when I left I told her, "I'm sure I will see you soon!"

We made it to my pre-op appointment 20 ish minutes late.  

The people there were all great.  

The appointment pretty much was giving them the same info I gave last time right before surgery.  

Detailed medical history, pharmacy information etc...a blood draw (just like the morning of last time) and a sit down with the anesthesiologist. 

 Last time I had an anesthesiologist come talk to me but there was a different one in the OR.  

(Just found that out yesterday.). 

This anesthesiologist Dr. Henderson will be the one with me next Wednesday.  

They will take measures prior to sedating me to help with post-op nausea.  

So here's hoping I don't yak like last time.  

I will take mass amounts of pain over nausea or just vomiting  any day.  

Blech! 

She reviewed I will have at least two IV's, possibly a port depending on vein options but I usually have good veins.  

I also will have another in my wrist going into an artery to very precisely monitor my blood pressure with every single heart beat.  

She said at different points throughout the procedure they will need to raise and lower my blood pressure... 
 She told us about the first step of sedating me prior to inserting the breathing tube.  

This will be general anesthesia vs. MAC/heavy sedation like the biopsy. 

 She was really nice and explained everything very well.  

Again, I will have a CT after to check on how everything looks.

 I may be still asleep at that point. 

 Following this I will be moved into ICU.  

Then she had touch base with the possibilities of things not going to plan. 

They may have to decide to not wake me up. 

I would remain intubated and stay in ICU. 

OR

I may not "want" to wake and I would stay in ICU while they monitor me and I "decide" to wake up.

Yeah, I know those won't happen but it was a pretty sobering moment. 

Yuck. 

Things went well and took a long time.  

After it all I had to head to the tire store because Andrew noticed on Sunday evening there was a gash through the first layer of sidewall on the passenger front tire on the van.

Remember how I mentioned there seems to be a necessary amount of chaos maintained ??

Another point on the list supporting the theory. 

So two new tires for the van 

and

hopefully we will save up in the next few months to get the van a whole new set of tires. 

After that I came home to the Boys.  Aidan asked me if they took out the "bad spot."

I reminded him that is next week (8 days now) and I only had pictures of my brain taken

and

had an appointment to show them how healthy I am. 

He seems OK. 

He later asked me if I would be able to lay next to him and read his bedtime book. 

I said, "Of Course." 

(He knows that after surgery laying flat will not be comfortable for me to do.)

He then asked me where the bad spot was. 

So, I showed him. 

He said, "Can I touch it?"

I said, "Sure."

He said, "Oh yeah, I can feel it.  Yup, it's bad all right."

So, now I wait for a phone call about the delivery of our new dishwasher..

Yep, ours no longer cleans dishes.  They need a  pre-wash, dishwasher wash and then we end up washing them again. (chaos again)

We will get that tomorrow. 

Pray install goes well.  Andrew is doing it.  He is very handy and this saved us some cash too.  

Then I should get a call from the hospital confirming my arrival time on the 13th and a call from my neurosurgeon's office to walk me through the procedure. 

Changes...

Man. 

The Boys coughs lingering and Daniel is still super snotty.  

Here I am hoping they get better before my surgery. 

I have finally come to the realization that they probably won't. 

And that's OK. 

 We seem to always "need" a certain level of chaos.  

I think I am slowly accepting that. 

Just like last month, when I had my biopsy. 

Logan had been sick for 3 weeks so I took him to the doctor. 

They gave him an antibiotic. 

8 days later (the day after my biopsy) he was covered in hives and another rash not like hives. 

Soo...my attempt to "make" him get better so we did not have to go to the pediatrician right after surgery failed miserably. 

It wasn't until I wrote the post about Aidan's Christmas Chapel that I realized this is just how it goes.  

You know, 

knowing that I would more than likely be in labor during Aidan's first Christmas Chapel. 

There are more occasions to back my theory than the two I just listed...

I know there are things out of my control and I just need to have Faith because it always works out. 

There will be some big changes for the Boys with this surgery.

Mainly because after surgery I will not be able to take care of them for at least a month. 

My Neurosurgeon said, someone else must come in to take care of them otherwise my recovery will be even more difficult. 

I will be allowed to take walks but no exercise other than that until after my first 6 week office visit. 

"Do not return to the gym, play golf, swim, run or mow grass until after 3 months after surgery."

"Avoid aerobics, heavy house cleaning and lifting over 5-10 pounds."

"Do not drive 1-2 weeks after surgery."

"You may not drive for six months if you have had a seizure.  This is a NC State law."

Those are some of the big things that will really affect daily life around our home.

**Hopefully the last one won't happen and it will only be the few listed above it.**

Luckily, we have an AWESOME Family  who are signing up to help us out with the Boys. 

The Boys know something is up.

Aidan has some basic preparedness.

He knows I will be in the hospital for about 5 days. 

It could be longer but right now that doesn't matter.  

That will only matter if it has to be longer. 

This will be a huge change for the Boys. 

At least we can prepare Aidan a little and he does much better with change when he has a little bit of warning of what to expect. 

So, here we are 10 days before the craniotomy and resection. 

Tomorrow I have my 5th MRI in the last 13 months and immediately following 

go in for my pre-op testing. 

Time to go in Wild Preparation Mommy mode. 

Hope to post about our Best Christmas EVER soon...

Our "plan" or so we thought..

11 days..

Oh My.

I guess the reason I want to post about all that is going on right now is
well, to keep people informed
and
 a lot of information can be lost in translation.

Another reason I feel guilty for

is

selfishness.

I want to know that there are as many people out there

praying for us

or

thinking good thoughts for us.

The only way to get that is to let people know what is going on.

We live in a day where people are very private and don't want to “air their dirty laundry.”

My feelings are, let people know.

It shouldn't hurt you to let people know you are human.

It seems a lot of people want to give off a “perfect” life image.

No one has it “perfect.”

Whatever that means.

It's kind of like what is the definition of “normal?”

My normal is different from your normal.

My perfect is different from your perfect.

It's all about perspective.

We need challenges to grow

and

different people need different challenges.

We are all individuals.

Some people may seem to have it “worse.”

All I know is I have a great family, friends, a home, clean water, a warm bed...

I hope you get the drift.

Do I want granite counter tops?

Do I want a bigger yard?

Yes.

I would love to have plates for every season.

Is it practical?

No.

But, one day we may get those things if we so desire.

Will they change my life?

No.

OK..well maybe a bigger yard when you have 3 teenage boys.

I am grateful for all I have.

I am thankful for our “plan.”

This plan is not the “plan” I had for us.

There have been some bumps but it is way way better than “my plan.”

In my plan, we would have moved to another house by now.

I would be thinking of getting pregnant with our third child.

Our children would be 3 years apart. They were all typically developing.

I would have a super clean house on a tight cleaning/organizing schedule.

The list goes on...

What did we get?

The market crashes and moving won't happen for a while.

We have had neighbors move, die, get divorced, foreclosed on...

All in 7.5 years of living here.

I had our first child quickly and to “plan.”

Then when he was 8.5 months old I found out I was pregnant again.

I fell to the ground and cried.

I got back up and insisted that evening we would have a do over.

So we did.

We celebrated.

We sold a car that we had a lot of equity in.

Bought a cheap affordable car with cash.

We saved the money of the small car payment to help prepare for two babies 17 months apart.

Then all of a sudden our baby was not OK.

I was on bed rest and my Parents were out of town (they were to watch Aidan when I had Logan.)

I flipped out again.

I sat in the Doctor's office and bawled hysterically for a while.

Then I pulled myself together and listened to our new plan.

We then hit the perinatologist a few days later.

They sent me straight to the hospital to be induced.

My babies were 16 months apart.

They prepared us for a low 5 pound baby (Aidan was 8 lbs.)

He may not be able to breath on his own,

he may not be able to feed well,

he will have to pass extra tests before he goes home

because

he was deemed a preemie by my due date and his size.

Our Little Bitty was born 5 lb 3 oz, he came home at 4lb 12oz.

He did everything he “wasn't” supposed to do.

He was awesome.

He was a tad fussy at times.

I remember one day out of frustration saying,

“I did not do this to you on purpose.”

I was so overwhelmed.

Fast forward 11 months and I had told Andrew a few times let me know when you are ready for a third.

And he said, “Let's go!”

Lo and behold baby #3 came 9 months later.

My second OB appointment came and

we reviewed my blood work

and

found out this time I had “anti-c”.

An antibody in my blood that if the baby had a subtype of c my body would attack him and hurt him terribly.

They told us worst case scenario was “fetal hydrops.”

I still don't know if I have googled it yet.

They warned us not too.

Bottom line,

if my anti-c levels began to raise to a certain point my body would attack him

and

he would be born severely anemic or need an inutero blood transfusion.

In a way like people who are RH negative

but

I did not have an option of a magic injection to trick my body.

Monthly blood draws were needed.

Thankfully, it never became a concern.

After an eventful birth.

Our sweet 7 lb baby projectile vomited and screamed over 12 hours a day.

There was no help from our pediatrician until he finally witnessed the arc of his vomit.

We were sent over to a radiology place with a concern of pyloric stenosis.

Our baby may need surgery ASAP.

He was fine.

We changed his formula to soy.

*To all BF advocates, he was the same on breast milk.*

I thought I made sour milk and with no help from the pediatrician I gave up.

He also started being treated for reflux.

The following week he developed a cough.

Again, no help from the pediatrician's office.

I knew something was wrong.

Especially when I realized he wasn't waking to eat.

The next day he was diagnosed with RSV.

A few months of him still vomiting we met with an allergist.

We learned he has sensitivities to dairy and soy.

At 1 year old we learned these still to be true and now included nuts of all kinds.

By Logan's 2^nd birthday I knew something was not going as planned again.

AGAIN,

we faced no support from the pediatrician.

As told ,a month later I called back to get the referral for speech therapy that I was promised.

Within a month he was evaluated by an Occupational Therapist.

By August he had a diagnosis of Autism from the CDSA.

October he received a diagnosis from an MD.

December it was confirmed again when he was deemed eligible for services through the TEACCH program at UNC.

The list goes on...

From all of this I have learned.

If we did not have Logan. Our world would not be complete.

We would not have the understanding of Autism that we do now.

It was something we did not understand and our “opinions” tended to stand with all the naysayers regarding Autism.

We now see that was pure ignorance.

If Daniel hadn't screamed for 12 + hours a day then Logan's fits would have seemed even more terrible.

Luckily, Logan only tantrumed 4-6 hours a day due to his frustrations.

He has given us even more ways to see how the world works.
He has given us so much more understanding.

If I had not gotten pregnant with him..

well, we wouldn't have him,

our plan wouldn't have changed,

and here we would be wanting a third child.

It would not be the most opportune time to attempt to conceive.

My pregnancy with Daniel and our time wondering what we needed to do for Logan,

taught us patience and understanding.

It taught us to keep our Faith and Hope during times of great unknown.

All in all it prepared us for today,

Where we are.

We now know,

where we are today is only going to

better prepare us for tomorrow and the rest of our lives.

We are by no means perfect and daily see our lack of Grace.

But what we have is perfect for us

and

we are so grateful for all we are given.

Aidan's Christmas Chapel

Yeah..so I am over two months behind on this. 

In December was Aidan's final preschool Christmas Chapel. 

Rewind two years before and we were at his first ever Christmas Chapel.

I was in early labor. 

I went to Christmas Chapel, stood most of the time and held Logan. 

Yeah...I for some reason thought I would be in labor during Christmas Chapel but prayed it would only be early labor.

I guess I thought that because we always seems to have a certain maintained level of chaos and so that comes to just be an expectation of mine. 

I was right too.  But don't worry Daniel wasn't born for 17 hours after Christmas Chapel. 

So, Aidan was freshly 3 and did not like the crowd.  He screamed and bawled.  His Teacher's held him and he took a few potty breaks too. 

His second Chapel was better.  No meltdowns. 

This year was AWESOME!  He had fun, he enjoyed it and really sang. (Like he does at home AAAAALLLLLL the time.)

I have a few videos..yes they are longish. I just think it is cute to hear Kids sing. 

And I have a little college of Aidan in Chapel and after Chapel his Brother's, Us, and his class.

The first song they sang..

Feliz Navidad.  The 4 year old classes choice of their favorite song. 

At one point Aidan takes some cues from a friend and breaks it down. 

I love it.