Rogers' Rollercoaster

So, yesterday we had an IEP meeting at our base school.  So..yes, our son goes to our Church school but the Church school (most the counselor from how things seem to be done) is requested more testing.  That said, I knew from the meeting at the 12.5 days into the school year that her purpose was to push him into the public school so they could deal with Bitty. 

Amazing, enough though his Teacher is becoming more comfortable with him.  It really appeared she was working with him in fear of the unexpected.  Wondering when he would meltdown or as she wrote in an email, “Since we need to use our instructional time wisely, we do not create a show down with Logan.” That is just what every Parent wants to hear.  That said, we are also told that she is afraid to discipline him. 

Thankfully, the magic of the behavior chart (giving Bitty guidelines) his RDI therapist made has been beautiful and we have gone from nothing but negative chats with the teacher with no constructive information to constructive, helpful information with a few positive notes!

In the IEP meeting the Church school counselor told the base school IEP staff that they wanted to make sure we (Andrew and I) knew of the support the base school can offer so we know how the base school can help when we would need to move him over there because the Church school can’t do what the base school can.  Funny, enough the base school states he would be in the same situation and getting the same help that the Church school is giving him. 

The school psychologist was wonderful in asking exactly what is that we (Andrew and I) are wanting out of these tests.  I had already informed the base schools Head EC Teacher that this is not a need for us but us complying the Church school’s request. 

So, the Head EC Teacher stated that it wasn’t for us it was the request of the Church school.  So, the psychologist directed the question to them. 

Then stated that some of their requests versus testing she could do.  She pointed out that the educational testing is best done in the student’s school by the school staff.   People, that Bitty is comfortable with because if we pull him into a different environment and with a stranger he more than likely will shut down and it will skew and corrupt the results.  So again, the observations they have of him in class.  That said I would request the RDI therapist be the one to offer more information due to she is a non-biased observer. 

I feel the school counselor is doing her best to push him to someone else so she can go back to not having to work as much.  Just my opinion due to other interactions with her.  For example, telling me to contact the base school for to request the reeval.  The staff at the base school tells me that is not something they do.  I go and ping my Special Needs online groups and get the actual contact person with our public schools.  I call her, she answers in 2 rings.  She asks what Church school and then easily states, OH --- --- (counselor’s name) I have worked with her before!  Here’s what you do..and she in a 5 minute phone call tells me what I need to do, asks if I have any other questions, and within two minutes of the phone call sends me the promised email.  I was floored…that said the process with the base school went much easier. 

So, I very kindly (a tad bit on sarcasm dripping there) contacted the school counselor via email with the entire support staff on the email letting her know the difficulty I had with the base school and for her to better help others in the future give her the contact person and proper route to take.  Then did also throw in the information that the contact has said she has worked with you before. 

So..yeah..I threw a low ball but as classy and business like as possible. 

If this is your job, you know the process then please give proper information.  We were thrown into a last minute invite to a meeting that we were blindsided in. 

At a next meeting the counselor stated that it was the “unexpected meeting” that caught her off guard.  We have written proof that it was a planned staff meeting and we were only invited to it 36 hours before it began.  Unexpected my booty.  But..kill them with kindness, right?!  Well..that sounds terrible..treat others the way you want to be treated.  So, we smile, thank them but do speak simple and clear to make sure nothing is misunderstood. 

Anyways, back to the good day yesterday.  J  Every negative thing the Church school staff had written and pointed out about what Bitty was doing.  The lead EC Teacher, the base school typical Kindergarten teacher and the school psychologist would say, “Well, that is a typical Kindergartener action.” “Very normal for any Kindergartener to do that.”

I also made sure I added the 2 cent detail of their requests after 12.5 days of school.  All of the base school staff said, that is too soon for any Kindergarten child to adjust! 

I REALLY appreciate all they did. 

We then went on to giving them background on Bitty as they asked and looked at prior IEP and testing.  Stating he never had any academic goals it was all behavioral.  Again they pointed out the pointlessness of education testing and that again all of his behavior things are indeed pretty typical for a Kindergartener and a child on the Spectrum.  And that the issues he is having with multi-step directions are pretty darn typical (as typical as it can be) for a child on the Spectrum and again share they would be doing what the Church school is doing and that actually the Church school may have 5 more kids in a class but they have more consistent TA help than the public school does.  The base school has a much larger setting.  5 Kindergarten classes versus 2 and shared TA’s between classes.  In our school they have TA support full up through 3^rd grade and then shared part time TA’s after that. 

The school psychologist listed testing that could be done and the quickly listed why many of the choices would offer minimal to no help with what they (Church school) are seeking.  So, truly only one thing may be beneficial however, it is forms filled out by Andrew and I and one by the teacher and depending on how we answer it may not be a score able questionnaire.

Andrew and I shared our Bitty’s story with where he started and where is he now.  We listed the gains we have seen since Kindergarten started.  We shared our concerns of the Church school’s requests and mention what is doable and what is not for us.  As in the Church school telling us he needs a small class size which at any schools that have that is $2,000 a month minimum.   

We shared all we do for him and how we work with him. 

We then get the wide eyed shock look and told that we do more than most Parents of kids on the Spectrum and they are amazed by what we do.  People tell us that a lot.  We don’t understand that. 

As a Parent isn’t our job to help our Children grow and thrive?!  That said every day passes we feel like failures.  We did not handle something as we hoped to, we did not get to do something we hope to.  We ran out of time on a promise to our kids, we ended up yelling and screaming and throwing a tantrum like the kids did.  We feel we were too critical.  The list can continue.  We are just Parents doing our job.  We are not Olympians, we are not exceeding at anything but perhaps feeling crazy.  Isn’t that one other thing all Parents do?  Feel crazy?!  We have that one in the bag. 

Crazy wonderful, crazy crazy, crazy mad, crazy concerned, crazy hopeful, crazy frustrated.  Perhaps we are just awesome at crazy.  That is about it though. 

We left the meeting with a good feeling dates in place for appointments and more meetings.  It was good meeting but I left with my chest on fire and sweating.  That all is how my body handles stress and that was after I spent 45 minutes before the meeting speed walking to try to burn off some stress. 

During the meeting while the base school staff collaborated we gave the school staff a heads up of Andrew’s work wanting him to travel but just giving him a window of next week or the week after.  That said, he had went into the meeting with the message from someone higher up to call him when Andrew has a moment.  We told them we will prep Bitty but it will change our morning routine at home and Bitty may or may not respond well.  I feel if we don’t give them a heads up it would be used against Bitty as an excuse to push him out.  Any child has a hard time if a home routine changes, Bitty just has a little bit tougher time than the average kid.  Andrew left the meeting and made his needed work calls only to be told he needs to leave in a few days, the sooner the better.    So, our crazy wonderful life continues. 

Truly it is never dull and there is always the curve, hill or dip coming out of nowhere in our rollercoaster of life. 

Perhaps we just need to learn the safety dance, yeah..maybe that will help.  

Shirts are in!!!

Just in our hands about 15 minutes ago..

Ready for the 2014 Angels Among Us..

Are you?!

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.

Scramble Ramble

Today is one month until the

21st annual Angels Among Us

5K and Family Fun Walk

and I still owe a post that I said I would do last year. 

About the experience there. 

I am in the process of getting Team Shirts ordered. 

I have created a shirt image to use.

Yes, I created it with the help of

free apps and images to get the works together

nothing real savvy but yes I did it. 

We are also less than 2 week from our Logan

turning 5!!  

5 years!

I always have so much running through my head

I want to write about. 

If only I could attach a word processor to my brain

so I could "type" while thinking

and 

doing everything else I try to do. 

I need some 36 hour days where I get 12 straight hours of sleep 

and the 

kids get a few more so I can get some things done without

being distracted from them. 

They are growing up way to fast. 

We have our Bitty actually excited 

and 

anticipating his birthday. 

This is the first time in his 5 years to 

acknowledge it. 

In past years I have gone out of the box

to do something on his birthday

that he would enjoy

and 

show us he was aware of the day. 

Wow..that looks selfish

when typed out. 

That we did it for us?

Let me try again, 

so it was a day and time 

we all could really share together

and 

see all of us 

enjoying it. 

So if people think I go overboard

or 

as I have heard their comments

of criticism.

Their kids enjoy the day, 

they have fun

they are ready for cake

and 

blow out candles and sing. 

Logan does that now

at birthdays. 

He did start out screaming during the singing

and 

get even louder because

the candles were lit 

and 

very quickly blown out. 

He would stay far from the group

but would 

bee line through and then

go back to his space. 

He now may do that at times 

but stays closer

and if

someone chases him

he LOVES that. 

His best interaction with other kids

is to chase them or they chase him

(he takes turns)

whether they are on their feet

or on a bike. 

We need to find a gift for him. 

He has all he wants. 

Heck, Santa brought 

a train table to us December 2009. 

It gets used daily for hours. 

BEST EVER. 

It is in need of some TLC

but it is a must keep. 

But here I am scrambling for birthday ideas, 

party work, 

shirt orders, 

some "graphic design" (haaaa..yeah right..just simple not impressive work)

Bathrooms need scrubbed, 

clothes washed and put away, 

sheets changed, 

restocking the bread supplies in our home, 

some things need a few sewing repairs (not a professional

there by any stretch either, but can get the job done)
I also need to run!

I ran Ella's race last Saturday. 

I need to build up my endurance

in prep for Angels Among Us. 

I spent a lot of time psyching myself out.

The more I practice 

the more I "train" myself not to psych myself out

and 

build up endurance.  :)

But all while wanting to sit back relax and not miss anything. 

Oh the acts of juggling...

In the mean time random photos of last week and weekend. 

Ella's Race..the two finish photos and our Sweet Boys with the Chickfila Cow
and "snow trees" as our D likes to call them. 

Aidan's Lego Creation complete with his eye brow raise, and two dirty Littles.
This is a massive feat for Logey and have shared them with his OT.
DD he would sleep in the mud if we let him.  :)

The perfect weekend night, in PJ's early ready to relax,
D likes to climb on everything and everyone and a Father Son moment of
teaching how to fold paper foot ball for some fun.  

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.  :)

Also, Angels Among Us Video

Angels Among Us shared this yesterday. 

A few videos have been made for the 2013 year. 

These are some wonderful 

and

super smart people. 

I feel blessed to have been a part of it. 

I still have yet to make my post regarding

our experience at the event. 

It will come.  

It is a little over 7 minutes video. 

It is a good watch. 

Right at the end in the survivor walk

leading into the Family walk

we are there

and

Andrew is looking right on at the camera

Celebrating Angels Among Us from Blue Water Media on Vimeo.

A month to the date...

One month to the day from surgery.

Wow.

It's been a long month.

We have had a bunch of silly stuff happen.

For some reason God keeps

us challenged.

He is doing it for a reason

and

perhaps one day we will figure it out

or

maybe we will only get told a

smidgen of it.

To me that's OK.

It's OK because I don't want to be mad.

I don't want to waste my energy on that.

He has slowly shown us why we

are challenged on somethings.

I can only believe it

will slowly be revealed at appropriate times.

He is watching out for us.

It all will work out.

He will guide us

we don't need to understand

100%.

We just need to

have Faith

and

open ears and hearts

to bring in his guidance.

I woke yesterday morning

and

stood on the scale

I lost 10 pounds.

My clothes we just bought 3 weeks ago

are too big.

Most clothes after you wash them shrink a smidge

well, they did but they are now too big.

I got a call back from my Neurosurgeon's office.

It was one of the Nurses.

Dr. Grossi told her the night before

that he had been meaning to call me

but

his PA is out sick

and he was swamped

and said,

“Give her my cell and tell her to call me.”

Yeah..How AWESOME of a Doctor is that?

He did tell her that the neuropathology

was what he expected but

any questions I had to

call him.

I said it was OK.

I had talked to the people

at the Tumor Center.

They covered it for me.

I mentioned a few other questions

regarding my weight

and

some other issues that I am not willing

to share yet

but perhaps one day will.

I told her my gut was telling me to contact

my Primary Care Nurse Practitioner.

She said, “Yes, you should. Those are some strange things.”

Uh yeah...stick with your gut peeps!!

So yesterday I went and met with her.

I have for a while wanted to send her a Thank You note.
I haven't seen her since the day

she told me my MRI was not normal.

She's been kept up to date from my Neurosurgeon.

I got to Thank her in person.

I Thanked her for wanting to do an MRI.
I Thanked her for sending me to Dr. Grossi.

She said, “He's pretty awesome isn't he.”

I told her the name of my neuro-oncologist too.

I updated her on the Boys.

She also stopped and looked at Andrew

and

asked,

“How are YOU with everything??!”

She is wonderful.

She is concerned with my issues.

She is running a slew of tests

and

told us a few things she thinks it could be.

This is scaring Andrew a tad.

Since you know, she was spot on

about the brain tumor.

So we shall see.

In the meantime she said,

“Eat anything and everything you want.”

“Eat as much high caloric food as possible.”

I told her I am.

I said, “I have eaten tons of food

that I should at least be gaining some fat on

my a$$

but it's shrinking.

Yeah...peeps.

If I could take some peeps fat off of them

I would gladly do it

and

we all could be happy.

I walked Aidan into school the other day.

I am finally realizing a LOT of people there

know.

Especially people I have no clue who they are.

I got hugged by a random little Boy.

It is a lot to swallow.

I also know where Aidan is going to Kindergarten

next year.

Everyone will know.

(It's a close knit Catholic School at our Church.)

I could tell at Church on Sunday some

people knew.

It's hard.

For some reason I don't care

that I do this

but it means I don't necessarily

physically interact with people.

It's easier.

It's something that will

take time to process.

Maybe one day I will be better

but right now

everything

is a tremendous amount of

stuff for Andrew and I

to try and wrap our

minds around.

I don't know if we ever will.

But one day will be able to hopefully

handle it semi-gracefully.

Here are some photos.  

This is one week from today!  Join our team or if you can make a donation.  I am serious $5 would be AWESOME!!

Here we were getting close.  Not overwhelming. 

Our direction list with Andrew's phone assisting ...

Looking across the road at The Duke Cancer Center as we were heading into the parking deck.
There was a mass amount of adrenaline flooding my body from stress. 

We weren't celebrating.  We very rarely go out for meals,but wanted a drink
and a bit of time to process the appointment before we started talking to everyone.
You see how much is out of mine?!  Yeah...with all my body is doing and the meds...
I am a super cheap date...  Yeah...

Papa Bear Needs a Helping Hand

Hey there everyone!  This is Andrew typing up a blog this time around. This might just be my first blog post on here!  Feeling special that you are one of the privileged people to read my handy work?  Good!  Well, I have made my way to the blogger section of cyberspace to ask for some pretty hefty assistance.

As you all know, Carrie's surgery is just around the corner. Once the doctors root around her head with a couple of sticks and put her back together, she will be completely out of commission for about 6 weeks. I will get to be both Mom and Dad!  I am normally a major stubborn butthole when it comes to asking for help, but I am not going to be this time around. We already have a fantastic family support network that we will be tagging for quite a bit, but, as the Little Einsteins say "WE NEED MORE POWER!"

This is where you all come in. Many of you have already expressed interest in helping with meals for the kids or helping with childcare.  As the Dom (Dad/Mom combined) of the house while Carrie is out of commission, I need some help mainly with meals, but there will be other stuff.  If it was my choice, we would be alternating chicken nuggets and cheese burgers everyday, but I guess we need some variety in our diets.

I have setup a care calendar to help organize some of this stuff, including meals and visits for Carrie. This calendar can be accessed here:

The HELPER logon is used by family and friends
that would like to sign-up to help a loved one.

To access Carrie Rogers's personal CareCalendar site,
visit http://www.carecalendar.org/logon/141259 and enter
the following information in the appropriate spaces:

     CALENDAR ID   :   141259
     SECURITY CODE :   7765

This is the info right from the calendar site. I will be adding stuff as needs arise, so check back in from time to time. Any help would be greatly appreciated. We are already more grateful than you could imagine for the love and care we have gotten from friends and family throughout all of this so far.  We will definitely want visitors to the house to help keep Carrie company, so if you think you can get away with dropping something off and running, you are dead wrong.  

My email address is asrogers1981@gmail.com. Please feel free to contact me anytime with questions you have about anything you can think of. I am not Dr. Phil, so please keep your questions in the right scope!  Thanks for reading!  Let the madness begin!

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.

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.