Sunday, September 1, 2013

Happy 5th Birthday, Brianna!

Happy Birthday, Brianna!

I can't believe you are FIVE years old today!  It seems like yesterday I was rushing to the hospital with your aunt.  Your birth was quite the story!

These five years have been the most amazing years of my life.  I have learned so much from you.  I have not only become a better mother, I have become a better person.

Your five years have had two halves.  The first 2 1/2 years were filled with anguish and uncertainty, upheaval and confusion.  Your first year was filled with ups and downs.  You were born this perfect, tiny little creation, and I thought there was no more reason to worry.

Your daddy was in Afghanistan.  It's hard to believe he didn't even get to see you until you were 5 months old.

Those first five months I lived in a bit of blissful ignorance.  Or maybe it was denial?  I tried hard not to notice that your beautiful little body wasn't working quite right.  And when we were told that you had to have surgery, I thought that maybe the craniosynostis was to blame for your not quite being on time with your milestones.  I thought for sure things would improve after that.  And they seemed to, a little bit.  You made progress, slowly, bit by bit.

Brand new Brianna
One Month old
Two months old

Two months old
three months old
three months old
three months old

three months old
four months old

four months old

four months old

five months old

Six months old

You were just not gaining weight.  And then we had more appointments and heard things like "neuromuscular disorder" and "cerebral palsy".  I started to realize that maybe you weren't just going to catch up.  It was just so much to think about.  And each appointment I felt like no one really had any answers, and those horrible words "failure to thrive" kept coming up, with this seeming insinuation underneath that maybe your problems were my fault, that you just weren't getting enough to eat.  Especially after that horryfing appointment when you were 7 months old with that pediatrician who told me that that I was doing everything wrong, and that you definitely didn't have a metabolic disorder.  Oh, Brianna, how I wish I could make that doctor eat his words.  But once we saw the lactation consultant and got some help with nursing, it seemed like things picked up a little.  You were getting more from me, your weight was getting a little bit better.  We seemed to ride this little improvement until your first birthday.  And of course your daddy come home when you were eight months old!

 Of course that made SOOO many things better for our whole family!  And you took to your daddy right away!

Oh, Brianna, that time was such a blur.  You were sitting, and seeming to do a lot better with the help of the therapists coming to work with you.  But there was still so much going on.  You just didn't sleep, and then the seizures started.  We really just didn't know what was going on.  And it was so scary.  You were such a tiny thing.  It's hard to believe that you were only 13 pounds at a year, and still that much 5 months later.  If only we had known that the food was the enemy, and making things worse.

On your first birthday

Five months after your first birthday we had your feeding tube put in.  We still didn't know what was going on, but you weren't gaining weight.  Although you were slowly pushing forward developmentally, your little body was so tiny.  And it was almost another year still before we found out why your little body just wasn't working right.  In that time we found out you were going to have a little brother (which you're just now starting to get over the shock and annoyance).  What a year that was.  I'm really not quite sure how we got through.  But we did!  And it wasn't all so terrible!  We had some amazing times.   Here are some highlights from your first 2 1/2 years!

Before your Baptism with Grandma and Grain

Six months old, with Garin

Five months old, meeting daddy for the first time

Six months, with Garin

With Garin, one year old

A ladybug for Halloween! One year old 

One year old, with daddy

One year, looking up to your big brother! 
One year old, working on those muscles!

Decorating for Christmas, One year old 
With cousin Lauren, one year old

All Smiles!  One year old
Being watched over by Makai, Four months old 
Visiting the volcano with mommy and daddy, five months old

In Hilo with your family, five months old
Five months old, hiking on the lava fields

With Garin, six months old 
Reading with Garin, seven months old

Tummy time! Seven months old 
Meeting Mickey with mommy and Garin: nine months old

Giggling with Garin, Seven months old 
Nine months old, welcoming daddy home from Afghanistan!

Nine months old, meeting Great Grandma and Grandpa Maynard

seven months old 
Seven months old

Eight Months old, with Grandma 
One year old, exploring Oahu

After a hike to the lighthouse with Grandma and Grandpa 
Grandpa helping you stand, One year old

Playing with Grandma, one year old 
Visiting the Polynesian Culture Center with your family, one year old 
Christmas '09 (one year old) 
Christmas '09 
Christmas 2009, One year old

One year old 
One year old

One year old  
One year old, with your family

Snuggling with Garin, One year old
One year old, getting on hands and knees!

One year old, at Hickam Harbor 
One year old, with cousin Lauren

One year old 
One year old, at the beach with cousins Austin and Adam

One year old, hiking with Grandma and Austin
One year old, at the lighthouse with Grandma and Austin

One year old, snuggling with Grandma Pat

One year old, in the hammock swing with Garin
One year old, watching Elmo with Garin

One year old, at the beach 
At the beach with Grandpa, one year old

Kisses from daddy, one year old
At the beach with Grandma, one year old

Hanging with cousin Lauren, one year old

Meeting your cousin, Chally! 

one year old
one year old, meeting one of mommy's best friends!

Fourth of July '10

These Pictures are from our "epic" trip the summer of 2010, the summer you turned two.  This is when we traveled to Rainbow Babies hospital in Cleveland for a muscle biopsy and mitochondrial testing - testing that 7 months later confirmed that you had Pyruvate Dehydrogenase complex deficiency.  That summer we flew to Atlanta, visited your Aunt Jennifer, then drove to Montgomery for daddy to check into class.  Then mommy stayed with her best friend, Carolynn, in Birmingham, where the third of our bestie trio, Alicia, joined us for an amazing time.  Then we drove up to Ohio to spend time with Grandma Pat, we drove down to Cincinnati to meet your Great-grandmother, then drove to North Caroline to vacation with your grandma Pat, your great grandparents Maynard, your cousin Alicia, your great-aunt Donna, and we got to meet up with your Uncle Wes, Aunt Megan, and cousin Wes.  Then we drove back to Ohio, waited for Daddy to finish his class.  When that was done, we drove to Williamsburgh, VA for a week-long vacation, then drove to visit Grandpa Wes and Grandma Ludmilla in Texas, then up to California to visit your Grandpa Rick and Grandma Mary Ann and your great-grandma Rando.  Then back to Hawaii.  All that visiting in two short months.  Phew!  Here are some of the highlights!

North Caroline
North Carolina

Riding a horse at the Lakeshore farm park in Ohio

On the Smolen Gulf Bridge in Ashtabula, OH
 Celebrating your Second Birthday - you knew that chocolate cake wasn't good for your body!!! 

Two years old!


At a Tavern

In grandma's Ohio garden

gardening with Grandma 
Meeting the sons of mommy's friend and USAFA roommate, Becky!

Riding a horse on a visit to Grandpa Wes and Grandma Ludmila

with your cousins in New York 
In New York with Great-Grandma & Grandpa Maynard, Grandma Pat, Aunt Heather, Uncle Shawn and your Mitchell cousins

Being balanced by daddy in New York 
Visiting with more kids of Mommy & Dadd's USAFA friends

Wow, what a vacation that was!  And some more pictures to round out the first "half" of our time with you- before the diagnosis

An Indian princess for Halloween

At the beach with grandma Pat 
At the beach, not long before your baby brother was born!

Learning to walk! 
Halloween '10

Playing trains with Garin
kisses from Daddy

 Oh Brianna, those 2 1/2 years were full of ups and downs!  Then, the day after your brother was born, we received the news that we had been waiting for - a probable diagnosis, a reason for your struggles.  We found out you most likely had Pyruvate Dehydrogenase Complex deficiency.  Four months later they confirmed that diagnosis, and things began to change.  Brianna, you can't imagine how scary it was.  There was nothing I could find about this diagnosis that was positive.  Everything we read had us fearing for your life.  It sounded like the clock was ticking, and we wouldn't have you for long.  But then, I met an AMAZING group of people.  A facebook group of family of children with your disorder.  In this group of people we found some amazing stories.  Stories of sorrow, stories of triumph.  And most importantly, stories of hope.

These last two years have been a struggle, but what a glorious struggle!  You started the ketogenic diet, and how things started to change!  I read back over things I wrote the first two years of your life, and the constant theme was that you were always running out of energy.  After the diet, you started to bloom!  You began to walk, to cruise, and eventually to walk!  You began to vocalize more, and to interact more with everyone around you.  For the months before the diet you seemed to be slipping away from the world, more and more in your own little shell.  But now, you were engaged!  It made my heart sing to watch your light shine!

And now, for some of the highlights for these past two amazing years.

Meeting your baby brother

Learning to crawl, two years old

Dec '10 with Liam 
Checking out baby Liam Dec '10 
Decorating the tree 
Christmas '10 with Grandma Pat

Exploring Wainaia coast during a visit from Grandpa Wes & Grandma Ludmila

Christmas Morning 2010 
A visit from Grandpa Wes & Grandma Ludmila

Jan '11 
A visit from Grandma & Grandpa
Great Grandma & Grandpa Maynard came to Hawaii for a visit!

Cute as can be!

At the beach with Grandpa Rick

Brianna, after your brother was born we found the most amazing friends in our new neighborhood!  Those friends are now family and we will NEVER forget them!  They really helped us all get through those two years, through the ups and downs.  I don't know how we would have survived those years in Hawaii, separated from our family and friends on the Mainland, if it weren't for our adopted family in our neighborhood on the "ONC".  

two years old
two years old
two years old
At the beach with Jakey! Two years old

Celbrating your 3rd Birthday with our ONCers!

Celebrating Halloween with your ONC "cousins"  in 2011

Halloween 2011 
You started school!  So hard to imagine you a school kid!
Your favorite spot - the bottom of the slide!

Your new big girl bedroom!

It has been so amazing watching you learn to explore and play on playground equipment!

 In June 2012 your Aunt Jen made an EPIC visit to Hawaii, we had such a great time showing the island to her!!!

4th of July 2012

Your Fourth Birthday Party!!!

Add caption

Cowgirl and cowboys for Halloween '12

Halloween with the ONC crew!

Not diggin' the pumpkins

Quite possibly the world's most pathetic pumpkin patch!

We got to visit with Grandma & Grandpa on a trip to the mainland Nov '12

Add caption
Thanksgiving at Great-grandma Rando's house!

Seeing how close you can get to Daisy

Trying to maneuver yourself up to that TV!
One of the not so great times, a trip to the hospital :(
Thanksgiving at Great-grandma's house!  Nov '12

On the beach in December - won't be able to do that in December!

At Christmas Eve Mass '12 

Christmas 2012

Add caption

With your ONC cousins, Dec '12
With our best friends!  December '12

Wrestling with Daddy Dec '12 
Another rough stretch, Jan '13

What a beautiful little lady you are becoming! 
Enjoying Garin's birthday bouncy house March '13

Not so great overnight stay at the hospital in March '13

Add caption

At our favorite pool, the Hale Koa hotel! 
Is it time for my bath?

Hanging out with your awesome brothers, March '13

In April 2013 we got to do another amazing trip to the big island with Grandma Mary Ann!

Brianna, we've had an AMAZING five years with you.  Each and every day you melt our hearts.  You have blown us away with how much you've accomplished, with your little body struggling to make enough energy to get through the day.  You've taught us so much.  I know that I would not be the woman I am today if it weren't for you.  You have made me a better mother, a better friend, a better Christian, a better person.  There's no gift we can give you that can compare to the gift of your life to us.  We love you, and look forward to many, many more birthdays with you.  God bless you, our precious daughter.