News and "No fairy please"

What on earth happened?

Long over due and I apologize!  What an unexpected set of events these 3 weeks have been.  I have grown more gray hair and ability the react and think ubber fast on my feet.  I have grown weary and leaned hard on God.  Life is funny and challenging and unexpected some times, and that sums it up!

August 28, 2013- Tim and I arrived at 8:00 for his last open heart surgery, the Fontan procedure.  We did the usual prep and then were told the first surgery had JUST gone into the OR so we would be delayed from 8:30 to 11:00.  No problem, we watched some TV and waited.  At 11 am, we were told we would be pushed back to 2pm???  Wow, this boy is thirsty and hungry.  They allowed him some clear fluids and we were offered to spend the time in the playroom.  No problem, we love to play!

At 1:30 Tim was given his "giggle juice" to go nigh-night and off he went to the OR, completely asleep.

I then met with the surgeon and discussed all the details of what would be done and any concerns he had that would prevent this operation from moving forward.  Not to be dramatic, but, open heart surgery with a complex heart condition isn't easy peasy!  

We discussed Tim's unique anatomy of his fragile heart and the "unknowns"  were addressed.  Tim has had 2 echocardiograms and 1 heart catheterization.  He can not have an MRI due to a shunt that serves as his pulmonary artery and multiple surgical wires left in his sternum from his two previous heart surgeries.  This MRI would have verified the exact location of Tim's anatomy.  Dr.  Gaynor knew the aorta and the shunt were very close to Tim's sternum and chest wall.  He was not aware that Tim's body had so over produced scar tissue from the previous surgeries, that the Aorta was directly adhered to the sternum and the shunt was completely embedded in his chest wall.  In opening the sternum bone, they cut bone, wires and pry open the bone.  Nothing delicate about any of it.  The fact that this entire OR team has seen this all before, they were ready for the unexpected and had Tim already prepped for an emergency by-pass of the heart, which puts Tim in the safest position to fix any problems.

Well that unexpected did happen.  It is not certain if it was bone, wire or something else, but the aorta sustained a small hole.  Tim was immediately put on by-pass while the bleeding and repair of the aorta was tended to.  His vitals did not even waiver in the least.  But that rapid by-pass and the amount of blood products given to replace the loss, left his surgeon with 2 choices: 

press on with the Fontan 

or wait and assess Tim for any neurological, heart or lung damage.  

He consulted with the best minds here at CHOP and finally said..."If this were my son, I would wait and make sure before stressing his body even further".  I am grateful that he views ever child he operates on as his own.  Never hurts to be cautious and safe.

So, we unfortunately got caught by the holiday weekend and thus 6 more days we had not bargained for!  Bottom line....Tim healed well and reluctantly, agreed to go back and "unzip" his chest zipper again!

Words can't convey getting unexpected news, with no support team to lean on and then seeing your child fight to stay alive.  No words, nothing prepares you for it.  He awoke combative, trying to pull everything out.  He had no idea at this point, he was going to do this again in 5 more days.

He decided to drive himself to pre-op the second time.  This time we were moving swiftly.  He got the "giggle juice" and immediately grabbed me and wouldn't let go!  He was fighting the sedation with everything he had in him!

Police escort

So hard to let go a second time

So grateful this time would be the last time he would have to climb back to health.  So grateful my best friend flew out...just in case....and that "just in case" stayed away!

The Fontan was completed!  We have had more bumpy days than smooth.  Currently Tim is down 1 chest tube and 1 IV.  So much better than 12 tubes/lines he had fresh off the table!  He is battling pleural effusion right now....fluid in his chest cavity and lungs.  Hoping each day brings more and more healing!

This was day two.  I walked into his room and got this greeting.  It is insane how happy this boy is all...the....time!  

Can barely stand up, tubes coming out of his chest and arms and he begs to go catch "bad guys"!!!!!!  

By the way.... Life does go on even in the cardiac ICU!  

Tonight was yet ANOTHER big event!

Tim had another surprise for me.  As I walked in from grabbing a quick dinner in the cafeteria, He gives me this treasure.......

Tim's FIRST lost tooth!

After reviewing what this all means, he very strongly DOES NOT want the Tooth Fairy to take his tooth.  He was even willing to go without the treasure(money), just so he doesn't have to part with it.  Sooooo, we negotiated the terms.  

No fairy taking his tooth, it will be given to Mommy.  

In return, his treasure will be left under his hospital pillow.  

Deal!  

Apparently, his teeth will NOT be used to make any castle for her.  Why?  No idea? 

Letting the Tooth Fairy know the terms!

 But at this point, this Superman can call the shots!  He's earned it and more!

CHEESE!

  

All you need is.......

Well...in the perfect world that is a nice thought......BUT!!!!!

We Brakman's live in reality and the first thought that comes to mind.....is.....

Super Human Patience!

AND....... those who know me would be SHOCKED!  Since, I'm growing that in rapid fashion!  

Since my last post a blurrrrrr of life events have occurred.  Please view in an assortment of pics!

The new American's first 4th

TWO new swimmer's

No exaggeration 16 trips(in July and early August) to specialist at the AR Children's Hospital.  I never looked at nor heeded the STOP sign, until the last trip.  Yeah, need to work on reading and obeying!

Tim had urological surgery

We are still trying to get to the bottom of Beau's orthopedic

issues.  Second opinion still pending from a Texas hospital.

This adorable toddler had her tonsils and adnoids out.  Anyone who has met Kate knows how extra tough she is!  This surgery, right in the midst of our move, AND me leaving to take Tim for heart surgery in Philadelphia.... has set her back terribly.  Please pray for this babies heart and healing.  She is currently staying with my parents.

This big guy became a TEENAGER!

Bryce had his retirement ceremony.  

Kate provided the animation during his speech!

Tim learned some non-communist soldier moves.  Now wants to be a "marching man" in addition to his other future jobs...policeman, fireman, park ranger anyone who wears a uniform....etc!

Some well behaved kids....well, mostly behaved!

Tim FINALLY had his birthday!  He has been asking since January... nearly daily.... when HIS birthday was coming.  Just a little behind the scenes.  Tim and Kate have NEVER had a birthday.  To be honest, the birth date they have..... was assigned to them by China, most likely NOT their true birth date.  So when Tim saw what was in store with the first birthday party he saw...which was Beau's 16th in January.  Well, he couldn't wait for his turn at presents and cake and candle's!  Every month that went by, he added things to his wish list and told everyone he will be 6 and get his own bike.  The day finally arrived!  Although we called it Tim's FIRST birthday it was actually his 6th.  BUT, he actually had to celebrate it not on his birthday, which is August, 24, but on August 18th.  The open heart surgery schedule waits for no birthday celebrations!  Tim and I spent August 24th, in Philadelphia awaiting his surgery at the Children's Hospital.  NOPE, life isn't fair sometimes!

The rest of the update involves boxes, packers, moving trucks and an avalanche of stress!  Bryce handled our move from Arkansas to North Carolina.  Luckily my parents came to tend to the 4 remaining kids at home.  Tim and I are just waiting in Philadelphia for the BIG DAY to get here.....his open heart surgery. We have toured the city and are now just crazy bored!  Luckily we don't have too much longer.  We should get our surgery time for tomorrow any time now.

This morning Bryce got his 7:30 am "surprise your household goods moving truck is here" wake up call.  We have had to rent a very small town home as we have not had time to find our last and FINAL home, with all that has happened. Yes....that is 7...SEVEN..SEVEN people in 1700 sq ft.  So, that means yet, ANOTHER move is in our immediate future.  

Prayers for this family please..... we are all carrying a load, with much ground left to cover!

Sand, Celebration and Surgery!

WE HAVE A SURGERY DATE!!!

NOW THAT WAS EASY!

To be honest, I never even considered ALL the twists, turns and abrupt stops this journey of just getting a surgery date for Tim.  We started this waaaayyyy back on January 11, 2013.  

We knew going into this Tim needed his Fontan procedure done soon, as he was approaching 6 this summer and getting older is not a good thing, when only half your heart has been repaired.  

In a nutshell, most kids in the US have this surgery before the age of 4.  The longer the heart adjusts to life/work load after 4, the more difficult it is to re-train the heart to function after the Fontan is completed.  So the chance for complications after this necessary surgery is much greater.  

So your now asking yourself...."gee, it seems like they should just leave the heart alone then?"  

Good point, however, the heart is working infinitely harder than a normal heart and will give up at some point, much sooner than necessary.  So in order to prolong Tim needing a new heart (transplant), and he will eventually, the Fontan is done to lessen the workload on his heart.  This will give Tim the stamina to be a somewhat normal 5 year old boy.  He runs out of oxygen running to the end of our driveway.  He desperately wants a bike for his 6th birthday soon, but really can't go down the street without a few stops for gasping for air. 

The second part of this discussion is about.....

WHY DID IT TAKE SO LONG???

That is a fair observation.  The short answer is this:

1.  Details and data needed to be gathered on our Arkansas Children's Hospital.  I am obsessive about trusting, when it comes to my kids.  I really do call and ask hard questions from all the sections that will be involved.  The data wasn't bad, but really wasn't favorable to Tim.  AR Children's had not performed the Fontan on ANY child older than the age of 4 and never on a child who was partially repaired in another country.  The element to mess this up was growing!

2. Tim needed a heart catheterization because the echo that was done, left the cardiologist somewhat puzzled as to what his anatomy truly looked like in his chest.  After the cath was done a second possible diagnosis was added.  Tim has a artificial pulmonary artery.  The cath wasn't able to determine if he ever had a pulmonary artery or if his was removed due to it's disfunction in China, many years ago?  So Truncus Arteriosis with a big

                                    ? 

was added to his congenital heart defect list.  He is very complex indeed.

3.  A second opinion was requested by us to one of the top pediatric heart centers.  We chose Children's Hospital of Philadelphia(CHOP).  They are neck and neck for the best hospital for this type of procedure.  This second opinion took longer than expected, but in the end they have a tremendous amount experience with international adopted complex congenital heart defect kids.  We feel much more at ease with this choice.

4.  Our insurance company.  They required detailed evidence sending Tim to CHOP vs AR Children's is the best plan for him.  This is actually being decided as I type this blog.  Prayers they allow this referral to press on.... and Tim be allowed to have the best of care at CHOP..

So our official Surgical date for open heart surgery is:

August 28, 2013 at CHOP.

Are you exhausted yet??? Yeah, its been a journey, like I said!

In other related fun, we took this family on vacation to a beach near Tampa, FL.  

Let's see....

4 days in the confines of our car.... oh yeah, were having FUN now!

7 days on the beach in FL....they kids LOVED the sand, salt and surf!

2 hotel stops....Kate isn't fond of her porta-crib:(

20 or so friends/family member's visiting....so glad to see everyone of you!

1000 hours of sun and fun

1 billion grains of sand, sea grass and shells Tim tried to avoid as he walked on the beach...yeah really!

Turns out the sensory buckets we put our orphans hands in, to grow those pathways in the brains and prevent all the sensitivity to any different texture.....well, I never considered sticking his feet in them??? 

He walked like it was a gravel pathway the 35 feet from the concrete to the ocean.  He worked his way to walking without looking like an 88 year old fire-walking man, but never was comfortable.  

Our 2 year old was absolutely correct in her assessment of herself, she IS a tropical baby indeed!

FIRST 4TH OF JULY!

The little's FIRST 4th of July was a hit!  They loved the fireworks, fun and being as loud as they want to be without being shushed(Tim mostly!!).  This is our last 4th, actively serving this great nation!  So it was doubly special in our hearts!  Retirement and all the stress and hoopla it brings is upon us as of October 1st, 2013.  24 years of the military has been a marathon of it's own!

VACAY, YEAH!

JEEPERS!!

EVEN I HAD TO GO BACK AND RE-READ!  It has been 2 months plus since my last blog post?!!

If I weren't living this roller coaster, I would have realized the crazy long time that has elapsed.  Soooooooooo, Without one moment longer, here we go!

FASTEN YOUR SEATBELTS! 

                         You might want the 5 point restraint kind.....this will be a bumpy bit of info!

This guy is probably driving beside one of you RIGHT NOW!

YUP, He's Legit my fellow drivers!

Although, don't be alarmed, he drives more cautious than a gramma because  he bought his gramma's car and is channeling her driving skills!  

The Big kids all excitedly bid so long to school and started summer vacation.  Although if you remember,  1 "little" is a backpack wearing school going youngin too!

HE 

STILL

ASK'S

DAILY

WHY THERE IS NO SCHOOL, TIM POUTING BECAUSE THERE IS NO SCHOOL, AGAIN, TODAY.

ABSOLUTELY!  His big sib's have a lot to teach him! I have tried to figure out how to capture that enthusiasm....like pixie dust or something....to sprinkle on the "less excited about school" bunch in this house!  Taking suggestions, really!

Grand Canyon Or Bust!

Bryce and the BIG kids went west for a week of fun touring Vegas Baby!, Grand Canyon, Hoover Dam, Sedona, Some big crater thingy (of course that's the official name...pfft!) and Glen Canyon Dam and Zion National Park.

I stayed home with the LITTLES and had an enormously exciting time washing windows, touch up painting, fixing the slide on the pool, cleaning every inch of the house to get it ready to sell. 

WHAT ON EARTH???

I am just realizing, I was had.... AGAIN!

SHORT STICK DRAWN AGAIN!!!!

The little kids and I, waiting for our BIG kids to return from their vacation.  We survived!

Now since I referenced selling our house in the last paragraph, better fill you in on our crazy roller coaster, we are on currently. 

 Bryce has about 23 years in the Air Force.  We left the Air Force about 13 years ago to fly for US Airways.  Then 911 occurred and we were furloughed.  Bad deal, but the Air Force desperately needed qualified pilots due to the Gulf War.  We were lucky to land right back were we started.  So long story....very briefly.... we were still an employee at US Airways during this entire time.  

Although we had a commitment to stay on active duty until 2015, because of an annual bonus and moving from IL to AR last summer, Bryce asked for release based on Timothy's health needs.  We would like to be closer to family, to help in the many surgeries and appointments upcoming for Tim.  The release was granted and we are retiring as of October 1.  

SOOOO, We are selling our house by owner, in case anyone here is just DYING to live in Cabot, AR!

I will update you on Timothy and the complicated web of :

WHO

WHEN

WHERE

I KNOWWWW I have said that, LIKE EVERY blog since Christmas.....BUT

I promise we are getting much closer to the answers.  He is complex, and the entire puzzle is being pieced together 

EVER

SO

SLOWLY!

Next blog coming soon.....Our first FAMILY  VACAY!....

YES!!!!

I actually got invited to this one.....geez, you embarrass the family once and never get invited back again!

A TEASE, since I want ya'll to come back soon, now ya hear!

Mamaw Hot Rod, Mother's Day and the Stuffing

SERIOUSLY!!

I have fallen off the cliff.....

Me not keeping up with details is...well.... a serious sign of 

SOMETHING

 and lets hope nothing to permanent??  I am falling back ON the blog wagon to serve ya some of the ...

STUFFING

Or just report on life in the super-sized HOV lane around here!

Oh, I crack myself up .... since my first topic is the perfect seg-way!

This is the Beau- leader of the kid pack

- in his new used Prius he bought from his Mamaw  HOT ROD!!!!!

If all of you remember his proclamation when he was 2 years old....he wants a green car with windows when he grows up.....Well, it has windows and with the proper lack of lighting, it could does have a green hint!!

Tilt your head right...ok... squint...yep there....now it looks more green----ish:-)

He is Over the Moon at the gas pump, as it doesn't empty his wallet!  I never thought I'd raise such a practical child??? ODD FEELING!

As the school year winds down, It always seems we get stuck in some sorta WARP speed ride.  The kids are just too busy these days.

Megan is sad to have soccer end for the season, but very excited to have no school soon!

Wes has soccer, band and general mischief to occupy him until further notice.... which the general mischief part may last until he is about 183 years old, or there about.  

My first Mother's Day as a super sized Mom..... wait a minute, let's re-write that a little more flattering.....as a Mom who live's in a shoe and has more children than she know's.... all righty, that's not it either...

AS A MOMMY TO 5 YOUNGIN'S

Well maybe there isn't a less comical way to put it? 

Yes, by the way, it still strike's a...What? huh? really? That many kids? Why? 

When I think to hard about it.  Since life stumbles on, day to day, with only a few minor hiccups and children being left behind....on accident mind you.... I only notice in the laundry category or the trying to squeeze 7 people in one hotel room category, that we are very large!

Mother's Day was spent in the usual way: Church, laundry, meals, a trip to a local park and chopping wood for a fire, to make smore's.  I'm certain I saw other Mom's in the hood chopping wood n there back yards too

...this is Arkansas after all!  

A pic o gram of the day's events...minus the laundry, so silly if you logged in for that pic....come by any day of the week for a "live" shot of that!

geocaching until...

the tick count over exceeded the acceptable amount!

Red Rover, Red Rover.....and no, that is not me escaping on the bike!

Tree climbing and a case of the "giggles?"

Puff the Magic Dragon Brother!

Fire is HOT!

Ummm, what is this for again?

My five little monkey's swinging in a tree... 

I will update all of you very soon regarding Tim's upcoming open heart surgery.  We are waiting for our second opinion to be given.  

Breaks, Bunnies and WHOA 5 months!???!!

Easter 2013

Where did the time go??

We are swiftly approaching our 5 month anniversary of being a family of 7!

OF COURSE we will celebrate as all families of 7 do,


One of us will get a heart catheterization.....

DUH!!!

Well more to the point....this guy needs a check under the hood

Picking up from where we left off in January after his echocardiogram....We still need to get a clear idea of where all anatomy of his heart is and how it is functioning.  He has grown a tiny bit and had his dental work done all things needed to clearing the path for the next step...

Well ANY step forward at this point is a great thing!  

April 9th Save the date!  Prayer's Please:)

Tim is scheduled for his heart cath. at Arkansas Children's Hospital.

SPRING BREAK

Our family decided to hit 2 different time zones for Spring Break.  Well in 2 different packs that is!

The "little's" and I flew stand-by to visit my family in Greenville,  NC.  

It's quite possible several things may have been overlooked....in no particular order of course:

1.  Someone's underwear.

2.  I am too old to fly with 2 small children by myself!

3.  Dude, what were you thinking?  Your too old to shlep two kids and stuff by yourself!!

 4. Did anyone mention, Cindy your advanced age might make it a challenge travelling alone with 2 small children?  

Ummm...... 

N

O

P

E?????

Ok, I may have over-shot the runway on my confidence in my abilities a bit! Ok, a lot then.   

It was so good to visit with family and friends!!  However, I am still scrubbing my memory bank on that whole getting there and back part.  Some pic's of the littles first ever egg hunt.

Kate needed an assit from Aunt Beth!

Tim walked around and around holding the basket, then realized what to do with it when he heard candy was in the eggs!

And some of the "Big's" Spring Break fun in Colorado!  Next year, I hope to pull the long straw!

Beau and board

Wes, busted for NOT having his chin strap clipped...grrrr!

My smiley girl Meg!

We all returned home to celebrate our Easter together.  Tim is still having a hard time grasping all the true and commercialized meanings of all our celebrated events.  As I explain, I'm completely awestruck at how ridiculous some of our traditions are!!!  It's amazing how much of our daily lives have been hijacked by merchandizing and the world at large.  I too want to wear this face...

  What on EARTH??? That's crazy talk Mom?!!?

This boy cracks us up with his ever exploding English phrases and funny gestures.  One "too funny" moment was this....My Mom is quite the gardener.  Her backyard is an oasis of typical back yard tranquility!  The squirrels are her nemesis!!! They help themselves to her bird feeders despite being "squirrel proofed?"...Ummm , yeah, that's not possible!

Now Tim is starting to get all his animals learned(in english)....but not quite there yet.  He has never seen pine trees or the cones they drop.  While eating breakfast he spied those bold squirrels eating and yelled  at the top of his lungs....OH HEY, CHICKEN...NO!  Then ran outside!

Upon his return he announced he had fed the "chicken's" now a "pancake".  Translated in English...He thinks the squirrels will be fooled into eating a pinecone....or whatever Mom called those prickly things!  

Some pics of our Easter, which is really the only reason why you clicked the link anyways....yeah, I may look blonde, but I'm not really ya know:)

Surprisingly NOT the egg dyeing disaster  I was predicting with two newbies!

OH WOW another "day"of gifts?!!  Love this "HOME" thingy!

I can't WAIT to shoot this on the roof today!!!

Wes LOVES a clever bunny!

See Mom... If I had those SKY HIGH heels you don't want me to wear, reaching things would be easy!

This is such a "faux" shot!! I really slept through all the hunting for these!

Too cute for any caption!