A Look Back: Remembering Our 2008 New Year's

With the coming of this new year upon us, I have been deep in thought about where my little family was this time last year.  One year ago today on January 10, 2008, Josh and I brought Audrey home from an eleven day stay at the Pediatric ICU center at Sutter Memorial Hospital.  With many of you being familiar with what happened, I'm sure you remember that Audrey came down with Infant Botulism, a very rare disease, also known as an orphan disease in the medical community.  About only 100 infants are infected per year in the United States, and our Audrey just happened to be one of them.  In case you are not familiar with Infant Botulism (trust me, most people have never even heard of it) an infant contracts Infant Botulism by breathing in a spore that was released into the air.  These spores live within the earth, and become airborne when there is movement to the soil.  This could be from construction, digging, tilling, farming, etc.  Once the infant breathes in that spore, and for that spore to take root in the body, the infant needs to have a comprised immune system at the time, and they also need to be constipated.  If all of these conditions occur at the same time, creating the "perfect storm", the spore begins to attack the infant's nervous system, shutting it down - thus leaving the infant basically paralyzed.  Our Audrey started to act strange on the 30th of December. At first she had a hard time nursing, almost like she had forgotten how.  By the next day, Audrey had lost all ability to hold her head up on her own; it was flopping from side to side like a newborns.  We took her in to the doctor, who referred us to Sutter Memorial Hospital, and when we arrived, we were told that our room we almost ready.  "Our room is almost ready?" I remember thinking in a haze.  I was so confused.  By this time we still did not know what was wrong with Audrey, but we knew that whatever it was, wasn't normal.  I remember being escorted to the room and walking into the Pediatric ICU.  Panic shot through me, and I remember trying to stay calm.    When Dr. Smith arrived to examine Audrey, he asked us a few questions about her, examined her to test her strength (with was almost gone by this point) and said "Excuse me while I grab a chair.  I need to discuss your daughter's diagnosis with you."  Instantly I thought, "is this going to be the worst day of my life?"  When Dr. Smith sat down he told us that he thought Audrey had Infant Botulism.  He explained what it was, and emphasized the fact that Audrey was going to be okay; most children who contract Infant Botulism make a full and complete recovery.  She just needed to have a single shot of a drug.  He told us that we may be here for a bit, but that because we caught it in enough time her prognosis looked good.  He went to order the drug (the hospital did not carry it), and Josh and I began making plans for the night - our New Year's Eve.  It was only over the course of the next couple of days, did I become to realize just how scary Infant Botulism is, and how very lucky and blessed we were with our precious Audrey.  This is what I learned:

• Like I previous mentioned, Infant Botulism shuts down your ENTIRE nervous system, leaving the infant paralyzed.  The process happens within a matter of hours.  This is why infants suddenly can't nurse (they loose their ability to suck), and this is also why most infants who contract Infant Botulism are put on a respirator.  With the ability lost to contract their muscles, infants loose the ability to breathe on their own.  Because Audrey was diagnosed in enough time, this didn't happen to her.

• Most Doctors are not familiar with Infant Botulism.  The symptoms for Infant Botulism can look almost like anything: not wanting to feed, constipation, & dehydration.  Until you add "lost the ability to hold themselves up" and if you have a doctor who doesn't know what this might mean, the child often gets "lost" in the system.  Luckily we had an experienced Doctor with Audrey who had treated a case of Infant Botulism a couple of years previously.  Most mother's that I have talked to whose child had IB, watched their child get poked and prodded with every test imaginable while they slipped deeper into the disease.  All of their children ended up on a respirator because the doctor's didn't realize what was happening.

• When Dr. Smith told us that Audrey would need a single shot a drug, and that he had to go and order it because the hospital didn't carry it in stock, I truly didn't grasp what he meant.  The shot that Audrey received is called the Baby BIG shot.  NO hospitals carry this shot; it is kept in Southern California, I'm guessing at the lab where it was created.  When Dr. Smith "ordered" this shot for Audrey, it was personally flown up to Sacramento on New Year's Day where it was hand delivered to the pharmacy and mixed for Audrey.  The hospital had to get clearance to agree to pay for the drug before the drug was even put on the plane.  Wondering what the cost of this drug was?  A shocking $45,000.  FOR ONE DOSE.  However, one dose is all Audrey needed.  The Baby BIG shot was approved by the FDA in 2003.  Before this shot was approved, the average stay in the hospital for a child with IB was roughly six weeks, with a ventilator.  Our stay with Audrey, without a ventilator, was eleven days.  Thank God for modern medicine.

Throughout this entire experience with Audrey, I was beyond humbled by the kindness and generosity of people.  I was also amazed at the strength that both Josh and I mustered.  Those eleven days were undoubtedly the longest of my life.  At times I felt like I was watching my child die before me, and at other times I was celebrating her own little victories ("Look, did you see her grasp the rattle?!).  When Josh and I walked out of that hospital a year ago today, Audrey was quite weak, and still very little, but she was okay.  Within a couple of days she was smiling, laughing, and had returned to herself.  Her doctors warned me that because of the damage done to her nervous system, and because all of her neurons needed to grow back that she will likely miss and be slightly behind on her developmental milestones.  What the doctor's didn't account for was her will and determination.  She never missed one milestone, and even began walking at 11 months.  Our Audrey is a fighter, for that I am sure - and I have never been so proud.  Today she is a busy toddler running around and destroying everything in sight.  She will never remember what she went through, and for that I am grateful.

I felt a strong urge to post this story today.  To honor the memory of those eleven days, knowing that we are so richly blessed.  Thanks for reading & remembering with me.

   

Audrey & I a couple of days into her hospital stay.

Audrey resting while in her crib at the hospital.

Audrey on January 14th, three days after returning home.

Audrey today - a beaming, happy and healthy little girl.

A December to Remember

My, oh my how time passes!  Honestly, I can clearly remember the beginning of December.  I was unpacking and getting our lives back together from the cruise, wondering where the heck my Christmas cards were (hello, I ordered them before we left!) and I was cursing myself because I did not have all of my Christmas shopping done (admittedly, I knew this would probably happen; but I so wanted to be better this year!!)  Knowing that this month was going to pass by quicker than one of Audrey's naps, I braced for impact - yet I don't think that it did any good!  Today is Tuesday, the 30th of December and honestly it is one of the first days that I have been able to breathe a sigh of relief that it is all over.  During the last month of this year I have witnessed the passing of an older generation, welcomed my Sister into my home (yahoo!), flew back home to Salt Lake for a 15-day stay (fifteen days you ask? Was I crazy? Heck yeah!),  Audrey experienced snow for the first time, and then she refused to sit on Santa's lap for the first time, Christmas Day with all of it's magic and wonder came and went - AND THEN - (yes, there is more) the three of us flew back to Sacramento on the 26th in time for Ted & Amy's wedding (dear friends of ours, of which Josh was one of the groomsmen).  We attended the rehearsal & dinner that night, celebrated their wedding the next day, and then finally  shared Christmas with Josh's family on the 28th.  Geez, I am exhausted just explaining all of it! My apologies to all who have been suffered from neglect on my end... Life has just been so crazy!  I promise to make it up to you next year (He he!)  Hopefully the following pictures provide you a glimpse into our December... a month that has passed by much to fast to remember!

My Grandpa Jack, pictured here with Kate, Audrey and I in November of 2007, passed away at the end of November.  While he was not a big part of our lives growing up, he cherished Audrey and loved her so.  I will remember him for his witty personality, advice that he gave,  and for his funny emails.

His 1930's Ford Classic car was at his funeral.

Audrey & her Tia Katie back in Salt Lake.  Audrey was showing her support for the Peace Corps, a gift from her loving Auntie!

Audrey's first steps in the snow!

Ah.. this white stuff is kinda cold!

Audrey and Kate hammin' it up for the camera!

Audrey's first sled ride... what fun!

Smiles galore!  Audrey's first snow experience turned out to be a success!  YAHOO!

Audrey at the family Santa Christmas Party.  She looks like she is having a good time here, until....

...Santa arrived!  She wanted NOTHING to do with the jolly old fat man who was handing out presents.  Notice the grip she had around my heck?  Yeah, she wasn't going anywhere near him!

I WANT YOU!

During our stay in Salt Lake, my Mom made Audrey this adorable hat.  I couldn't help but include this picture!

Christmas Eve has finally arrived!!  Audrey was showing off her ability to point out her belly-button.  Isn't she the cutest?!

Audrey & I at my Grandpa's house on Christmas Eve

Marquiana, Liz, Isiah, & Madison enjoying the festivities.

Kate, Jessica, Liz & I

Kate & Morgan

Audrey giving sloppy good-bye kisses to Grandpa

It's Christmas Morning, and Audrey's favorite gift was this box.  She spent quite a long time moving it around the front room, and climbing in and out of it.  (Note to self: next year, don't spend ANY money on her: just get her a box!)

Grandma Deb & Audrey reading one of the books that Santa brought her

FINALLY FLYING HOME!

Sacramento, here we come!!

December 27, 2008

Congratulations Amy & Ted!  What a beautiful wedding!!

Thanksgiving Cruise

This year for Thanksgiving, Josh's parents treated all of us to a 7-day Mexican Cruise aboard the beautiful ms Oosterdam, one of Holland America's cruise ships.  Having never been on a cruise before, I was a bit nervous (being pregnant, having motion sickness, AUDREY!!) However, I am happy to report that we all enjoyed ourselves.  Audrey loved being absolutely spoiled by her grandparents, and flourished with kisses from her uncles.  Josh and I relished in the two nights that Audrey slept in her grandparents cabin (THANK YOU AGAIN, LINDA & PAUL!)  My favorite memory of this cruise, was the day that Linda, Audrey and I spent at the beach in Cabo San Lucas.  The weather was just beautiful, and Audrey had so much fun playing in the sand.  It was so calming and relaxing, it was perfect.

One big happy family!

Zack, Josh, Audrey and Jeff enjoying our first night out on the cruise ship.

Audrey enjoying herself in Cabo San Lucas.  She spent all afternoon filling a cup full of sand, dumping it out, and then starting all over again.  What fun!

Zack, Linda and Jeff in Mazatlan enjoying the sun.

Josh and I heading out to our formal dinner.  Linda and Paul watched Audrey for us while we enjoyed a "grown-up" dinner for two.  While I adore my little Audrey so much, I can't deny the fact that it was so nice to have a nice dinner all by ourselves.  

 My sweet precious Audrey.  While she was a handful on the cruise, she did exceptionally well adapting to her surroundings, and going with the flow.  She loved all of the stairs on the cruise ship, and spent a lot of time walking up them, and then down them - all the while reaching for one of our hands to help her.  Audrey has a straight forward personality: when she doesn't want to do something, she simply doesn't do it!  One night, after dinner, Josh declared: she is a 'Rubalcava'!  I just laughed and smiled.  Yes, our precious little Audrey may be a little stubborn, but it makes me love her all that much more.

Playing in the Pumpkin Patch

I love pumpkin patches!!  When I told Josh that I wanted to go to a pumpkin patch to get some pumpkins, I have to admit that I was pleasantly surprised when we stumbled upon this particular pumpkin patch.  Previous pumpkin patches that I had been to were just that: a field (dirty, no doubt) filled with pumpkins that grew there.  Dirt, or no dirt, I wanted some pumpkins (plus, who could deny the photo op with Audrey?)  So, off we went!  As previously stated, Josh and I stumbled upon this lovely little "Pumpkin Farm", and had a wonderful time with Audrey.  The grounds were beautifully kept with pumpkins to be found everywhere.  Audrey enjoyed running around, picking up pumpkins (in some instances only attempting to!), setting them down, and then starting all over again.  The Pumpkin Farm had a petting zoo filled with goats, along with other animals kept on the grounds including bunnies, chickens, cows, and lamas.  The look of amazement and wonder in Audrey's eyes whenever the animals made noises was so much fun to see.  I am so glad that we "stumbled" upon this little gem of a place not to far from our home.  It is a place that we are sure to visit next year, and many years after that I am sure.

Our Disney World Holiday

Last week, Josh, Audrey and I met up with Josh's cousins in Orlando to go to Disney World (honestly, I don't know what I was thinking being pregnant and all!) But we all really had a great time!  We went to Disney's Hollywood Studios, Epcot, Disney's Animal Kingdom, and finally Disney World.  All-in-all, we spent 5 days at Disney's theme parks.  While it is pretty likely that Audrey won't remember this trip, she really had a wonderful time.  She enjoyed meeting Piglet, Pooh, Tigger, and Pluto, and above all loved all of the water fountains that decorated the theme parks.  It was Audrey's first time meeting her cousins from Ohio, of which, they all absolutely adored each other.  Below are some pictures of our trip.

For our first day at Disney World, we dressed Audrey up as Minnie Mouse.  

She looked beyond adorable!  

Here are photos of Josh's cousins: Percy, Ashton, Tyler, Piper and Grace.

They were all such a HUGE help with Audrey.  Thank you girls!

I couldn't resist adding this Pumpkin Mickey!

Here is Audrey and I at Minnie Mouse's House.... um, I wonder if she is home?

Carol, with her eye's closed (Josh's Aunt), Cousin's Becky & Matt (Parent's of the five girls) 

and Piper.

Audrey is here with "Aunt" Becky.  Audrey was laughing because the girls were tickling her... they had so much fun!

Finally, a picture of Josh and I...  

I have to say that during this trip, I was in awe of my husband.  Because I was so exhausted due to the pregnancy and all of the walking and moving that we were doing, Josh really did everything for Audrey.  and I mean EVERYTHING.  He is so darling with her, and loves her so much that it really was comforting to me to see their relationship grow a bit during this trip.  She certainly is a Daddy's girl, and I couldn't be happier.  

Thank you Josh for everything that you did on this trip.  

It meant more to me than you will know.  I love you!

Playing in the Backyard

A couple of weeks ago, we had our family pictures taken in our backyard.  Here are some of the best that I wanted to share with you.  It constantly amazes me just how much Audrey has grown up, and how much she continues to change.  She has such a personality on her (as you will see) and she loves to play with her Mommy and Daddy - ah!  Audrey really brings so much happiness to our lives, I truly don't know where I would be without her.  I find that my favorite time of the day is watching Josh chase her around the house and listening to her scream in delight.  Have fun looking at the pictures, I hope that you enjoy them as much as I do!

We are California Buckeyes!

Many of you may know that Josh's family is from Ohio, and in Ohio they kinda take their college football a little seriously.... so naturally, we, the Rohrer family, are Buckeyes!!!  Here is an oh-so-cute picture of Audrey showing some school spirit.  We just couldn't get enough of her in her darling little cheerleading outfit, and knew that you all would feel the same way.

Our Saturday Evening

Tonight, Josh and I had some fun playing with Audrey outside in our backyard.  Above is a picture of Audrey and Josh smiling for the camera.  Audrey just can't seem to get enough of my red watering can, and she loves to make a game of walking back and fourth from the cement to the grass.  We think that she is showing off to us her ability to do so.... She is getting so big!

By the Way...

In case you have not yet heard: I"M PREGNANT!  Josh, Audrey and I will be expecting a new addition to our family in April.  Audrey and the baby will be 20 months apart, and while I know to expect that it will a hectic transition for our family (with two young ones) both Josh and I really wanted our children to be close in age.  So... bring on the gray hair!!  HA!  All joking set aside, Josh and I are really happy, and feel extremely blessed to be so lucky.