Continued Fear and Unparalleled Love

*I apologize in advance for some missing photos - I used Photobucket for free as a means to store my photos and they are now holding a few hundred pics of mine for hostage unless I pay for an expensive plan and I also managed to lose half my photos from my computer*


Ever since Ellie's ENT appointment last week, I keep going back to an old post of mine--Overwhelming Fear Over a Little Girl in a Pink Dress.  In the past 3 months, both of Ellie's ear tubes have fallen out and the right ear is already full of mucoid fluid.  Her hearing is affected.  She has suffered from chronic adenoiditis since January and they are obstructing her airway.  As are her tonsils. This means that next month, my little Ellie Bear will under go the trifecta of ENT surgeries--Tonsil removal, adenoid removal, and the insertion of ear tubes (her 4th set of tubes).

Oh you mean, these tonsils????
This photo was taken 1.5 years ago.  Those little bad boys have nearly doubled in size.  

I know that a T & A and ear tubes are minor surgeries, but they are still surgeries and this is my daughter!  Those old feelings of fear creep into my mind.  Paralyzing me.  I just want to hold my little girl close and protect her.

Overwhelming Fear Over a Little Girl in a Pink Dress
*a re-worked post from June 2012 with some new photos*

The Little Girl in the Pink Dress. . . Ellie Bear. . . My Love, My Life

My daughter is so beautiful that it hurts.  She is so amazing, so precious, and just down right sassy that my heart is over flowing with love for her.  How is it possible that she is my daughter?  She is a gift.  A priceless gift.  And I fear that I will lose her.  That she will be taken from me all to soon.

Is this something that all mothers feel?  Is this why mama bears are so ferociously protective of their cubs that they will kill a human or another animal that trespasses too close to their family den?

When Ellie was a little over 6 months old, when she went into anaphylaxis due to eating a small amount of infant oat cereal.  A surprisingly rare allergy.  I drove so fast to the nearest hospital and by the time I arrived, her little lip was swollen and she was gasping.  A high pitched squeak was released with each breathe.  I fear for her life.  I later on felt a chest crushing fear every time a little child walked by with a Cheerio.  A cheerio could kill her.  Those infant puffs could kill her.  Thankfully, she has outgrown this allergy.

When I watch my precocious little adventurer climb that 2-story playscape, I have moments of mommy panic.  What if she falls and breaks her neck?  Yet, I know I need to let Ellie develop her independence, test her boundaries, and practice her gross motor skills.

Every time I am in the car and I look back to see an empty car seat, I have a brief moment of fear. Oh right, the car seat is empty because I have a babysitter or she is home with Andrew.

Then there are those scarier times when Ellie has her routine blood draw.  Her complete blood count [CBC] is routinely measured to look for signs of leukemia.  A cancer that could ravish her body and could take her from this world, from me and Andrew.  A cancer, that while rare, is more common in children with Down syndrome.  Oh how my stomach drops and my heart freezes as I hear the nurse on the other line calling with the results.  Oh how my huge sigh of relief could be heard across Texas when I hear that "everything is normal".

Then in June, when I rushed Ellie to the ER at the recommendation of her pediatrician to rule out meningitis.  Again, adrenaline seized me and fortunately it all turned out okay.

Or just this past Valentine's Day, when my little spider monkey decided to sky-dive off the side of a chair, bonked her head, cried, stopped breathing, and then seized.  It was Ellie's (and my) first ambulance ride.  I stared in horror as I witness my baby continue to have absence seizures the entire way to the hospital.  Yet, again, her guardian angel worked over time for her.

Facebook and the internet are dangerous places.  Facebook and internet forums can be excellent avenues for support and yet, they are also where I learned about another little girl Ellie's age diagnosed with leukemia.  They are where I learned that a little cousin was in a horrendous car accident required multiple surgeries to realign her shattered bones.  It is where I saw my friend's little boy miraculously survive Steven-Johnson's Syndrome after having a rare reaction to an antibiotic.

I have seen too much.  It is my own fault for opting to work early on in my career as a pediatric intensive care unit nurse.  Many of the accidents and illnesses that I have encountered during my years as a nurse were rare incidents. They were unlikely and yet, they serve to remind me just how fragile life is.

This is my absolute most favorite photo of me and The Bear.  

I never knew it was possible to love someone so much, with every ounce of my being until I became pregnant. In those first few moments when I saw Ellie before the nurses whisked her away, I knew that life would never be the same.  Yes, I have a fear of losing my little girl and yet, it has made me forever grateful for each moment that I spend with her.  Tell me, am I the only one who has this fear?  Hold you little ones close and whisper those sweet words of I love you.

***

Yes, The Chunky Chicken does own quite a few pink dresses.

Overwhelming Fear Over a Little Girl in a Pink Dress

My daughter is so beautiful that it hurts.  She is so amazing, so precious, and just down right sassy that my heart is over flowing with love for her.  How is it possible that she is my daughter?  She is a gift.  A priceless gift.  And I fear that I will lose her.  That she will be taken from me all to soon.

Is this something that all mothers feel?  Is this why mama bears are so ferociously protective of their cubs that they will kill a human or another animal that trespasses too close to their family den?

When Ellie was a little over 6 months old, when she went into anaphylaxis due to eating a small amount of infant oat cereal.  A surprisingly rare allergy.  I drove so fast to the nearest hospital and by the time I arrived, her little lip was swollen and she was gasping.  A high pitched squeak was released with each breathe.  I fear for her life.  I later on felt a chest crushing fear every time a little child walked by with a Cheerio.  A cheerio could kill her.  Those infant puffs could kill her.  Thankfully, she has outgrown this allergy.

When I watch my precocious little adventurer climb that 2-story playscape, I have moments of mommy panic.  What if she falls and breaks her neck?  Yet, I know I need to let Ellie develop her independence, test her boundaries, and practice her gross motor skills.

Every time I am in the car and I look back to see an empty car seat, I have a brief moment of fear. Oh right, the car seat is empty because I have a babysitter or she is home with Andrew.

Then there are those scarier times when Ellie has her routine blood draw.  Her complete blood count [CBC] is routinely measured to look for signs of leukemia.  A cancer that could ravish her body and could take her from this world, from me and Andrew.  A cancer, that while rare, is more common in children with Down syndrome.  Oh how my stomach drops and my heart freezes as I hear the nurse on the other line calling with the results.  Oh how my huge sigh of relief could be heard across Texas when I hear that "everything is normal".

Then last week, when I rushed Ellie to the ER at the recommendation of her pediatrician to rule out meningitis.  Again, adrenaline seized me and fortunately it all turned out okay.

Facebook and the internet are dangerous places.  Facebook and internet forums can be excellent avenues for support and yet, they are also where I learned about another little girl Ellie's age diagnosed with leukemia.  They are where I learned that a little cousin was in a horrendous car accident required multiple surgeries to realign her shattered bones.

I have seen too much.  It is my own fault for opting to work early on in my career as a pediatric intensive care unit nurse.  Many of the accidents and illnesses that I have encountered during my years as a nurse were rare incidents. They were unlikely and yet, they serve to remind me just how fragile life is.

I never knew it was possible to love someone so much, with every ounce of my being until I became pregnant. In those first few moments when I saw Ellie before the nurses whisked her away, I knew that life would never be the same.  Yes, I have a fear of losing my little girl and yet, it has made me forever grateful for each moment that I spend with her.  Tell me, am I the only one who has this fear?  Hold you little ones close and whisper those sweet words of I love you.

***

This post was written just after Ellie's meningitis scare, but BEFORE my cyber friend's little boy became severely ill with Stevens-Johnson Syndrome.  Sadly, the doctors are now stating that little K has Toxic Epidermal Necrolysis [TEN].  All of this from taking an antibiotic.  My heart is so heavy for my friend and her little boy.  He is a fighter.  He is strong.  His medical team is competent.  The care he has been receiving is excellent and so far appears to follow the treatment protocols for this type of illness.  Yet, I am scared for him.  Please, continue your prayers for K and for his family.  Updates can be found on his CaringBridge site---please email me if you would like the address.  Never take for granted your children, your spouse, your parents, your friends for it can all change so quickly.  Sweet boy, we love you so much!

Kicking Off Ellie's 2nd Birthday Week!

September 16, 2009 was the day a little squirmy bundle of cuteness and chubby cheeks changed our lives.  The day our daughter Ellie Marie Theurer aka Ellie Bellie Bear, Bear Bear, The Chunky Chicken, Chicka-A-Boom-Boom was born.



She used look like this:

Now:

Wah!  She looks like a big girl.  Where is my baby????

She used to look like this:

See that sweet look of innocence and crazy muppet hair.

And this:

There's that punk!

Now, like this:

Look at that hair!  The back is even longer.
This can mean only one thing. . . I am old.

Oh where has my baby gone?  Who is this full-blown toddler Bear?

A Year in Review:

Beary Special Birthday!
Ellie 12 months-old 

October 2010 / 13 months: Look at how short her hair was!
Obviously she was going to be a bear for Halloween.  This year--a chunky chicken. 

November 2010 /  14 months: The Chunky Turkey

December 2010 / 15 months: Bringing in the Holiday Bear Cheer
Clearly we were not in Texas with all that snow!

January 2011 / ~16 months: Yep, was sassy back then too.
Says "MAMA" :-)

February 2011 / nearly 17 months: almost walking!!!!!
Diva Alert!

March 2011 / 18 months going on 20 years
Walking!!!!!

April 2011 / 19 months
No more oat allergy!  Bring on the pancakes :)

May 2011 / 20 Months

June 2011 / 21 months
Ellie Bug

"I Just LOVE Baby Signing Time!"

July 2011 / 22 months
Officially running, climbing, and giving mama bear heart attacks.

July-August 2011--My favorite photos ever.
Ellie is really possessive of those Converse shoes.

 Beginning of September 2011 / 23 months
Four words: dog, woof-woof, shoe ("oooh"), mama
Now climbing EVERYTHING.

Ellie Bunny Cheerio

There is an old saying in the medical field (and maybe in other fields) called "If you hear hoof beats, think horses."  As in, think of the common things such as ear infections when a kiddo presents with ear pain rather than a rarity such as a tumor (really really rare).

Howdy.  Unlike my mommy, I am pretty laid back.

It is a great analogy and it works really well except when it comes to my darling little Ellie.  Then, I hear Zebras. Lots and lots of zebras.  Like a whole entire herd of zebras with perhaps 2 or 3 random horses mixed in. Like when that spot on her leg started to turn red, warm, painful, and swell.  Clearly the spot was getting infected, but Mama bear panicked.  Of course it was after pediatric office hours.  More panic. What to do?  What to DO!?!?!  Visions of The Bear having to be admitted into the hospital and surgery on her wee chunky little leg danced through my head.  And amputation.  Hoof beats = zebras.

Ack!  Sophie is trying to steal my bunny ears.

Then I had to step back, and say to Andrew: "If this was my patient, and not my daughter, what would I do?"  Easy peasy because they are horses.  I would culture the area and start antibiotics all while reviewing with the family about what to look for if it gets worse.

So, take a wild guess what happened when we went to urgent care?  The area was cultured and Ellie was started on antibiotics.  Her leg is now absolutely beautiful (and chunky) with a small little scab to serve as a reminder.

Ellie Bunny Bear

Moving on to today.  I will start by saying ELLIE CAN NOW HAVE CHEERIOS!!!!
In case you are wondering about the significance of the above statement, please click here.  Or here.
Ellie Bear and I had a nice bonding experience over play telephones and plastic dinosaurs in the allergist's office this morning for today was her big oat-tolerance-food-challenge.

Ellie Bear totally rocked it and in her typical bear-fashionista style.

Sorry, I have no clever or witty comment. Just enjoy the cuteness :-)

Pre-test:  Paranoid Mama Bear.  Backpack full of Cheerios and infant oatmeal, unopened and safely secured in plastic wrapping which is in plastic grocery bag.  Epi Pen Juniors x 2 clutched in my hand.  A full binder of medical records complete with every single doctor ever seen and multiple emergency phone numbers is also in the backpack.  (I like to be prepared).  I was scared out of my mind to let the box of Cheerios near Ellie let alone let her have one.  Sure, the office called and said "be sure to bring her Epi pens and our office is fully equipped with oxygen and epinephrine." Seriously, why should I worry?  They have their own oxygen.  [sense my sarcasm]

Skin Test for Oats (sorry such poor quality)

Repeat skin test & wait 15 minutes: Negative
Smearing of oatmeal on lips & wait 20 minutes: Negative
1/2 tsp of oatmeal & wait 20 minutes: Negative
1tsp of of oatmeal & wait 20 minutes: Negative
1/4 cut of oatmeal + handful of Cheerios & wait 1 hour: very excited and happy Ellie :-)

So, what was I worried about again?

Was this really taken a year ago?  When did she get so big? 

Chick-A-Boom can now walk (toddle) into a restaurant and have pancakes or French toast or Cheerios!  I am jumping up and down for joy.  Yay!!!  Yippy!!!  Relief.  Big. Sigh. Of. Relief. {sigh}

Yeah, Andrew was involved in this.  Also taken last year.

Don't forget to vote (daily please) for Ellie's blog at http://www.circleofmoms.com/top25/inspiring-families  Thank you!!!

Spots, Oats, Development

**Because Ellie's funky spots are still rearing their ugly heads, you will have to deal with my amateur attempts at photography.  Subject: The Hungry Caterpillar.  And, no, I do not have too much free time :-P

My daughter has never enjoyed a Cheerio.  Ever.  Because if she did, she would die.  Literally.

Okay, maybe not if I had her EpiPen Junior handy.  What child doesn't eat Cheerios?  Isn't that a part of being a child? Gasp. Sob.

Hopefully, all of that will change next Friday.

RRROOOAARRRRR!  I am a VERY hungry caterpillar.

But First:

The past few weeks have been filled with all sorts of fun and entertaining appointments (notice my sarcasm) and then of course, Ellie's painful spotty, nasty, red, blistery rash in horrible places.  Yuck! And then the cellulitis of her leg due to part of the rash getting infected thus requiring antibiotics.  Yuck!  And the perpetual ear drainage/goop/pus/nastiness requiring various types of ear drops.  Yuck!  And snot.  Yuck, again!  She is leaking everywhere!  Well, not every where.  It really could be worse.  Seriously, much much worse.  Like vomiting too. . .oh wait, yep, projectile. Yuck!

Did I mention that I am VERY hungry?  

Well Check:
A few weeks ago was Ellie's 18 month Well-Child-Check. (I am a little behind on the updates.  Oops!)  My daughter, in her typical, smiley, Ellie-Bellie-Bear fashion was a super star charming the scrubs (and panty hose) off everyone in the office.  Yep, all while wearing a very fashionable Costco diaper and pigtails.

She gained weight, finally!  Hooray for GI meds!

Wt: 20lb;  3% on regular chart
Ht: 29.5 inches; 5% on regular chart

We checked her Thyroid and a CBC.  As many of you now know, children with Ds are at higher risk for thyroid problems as well as leukemia.  Therefore, routine screening is performed.  As you can imagine, my mommy brain panics which results in me contacting the office for lab results every other day.  They know me by name.

Lab results:  NORMAL !!!!  YAY!!!  Big. Sigh. Of. Relief. [Recall paranoid mommy brain]

Very very hungry!

Allergist:
Thanks to Ellie's previous anaphylactic reaction to infant oatmeal, we get to add "Allergist" to our list of specialists.  Dr. L is awesome.  Given that an oat allergy by itself is considered well, odd, we had to go in for more skin testing.  Goody.   Fortunately his office rooms have these really neat and exciting plastic dinosaurs.  It was in this office that I discovered Ellie loves dinosaurs.

Dr. L had his own mini panic attack when I informed him of Ellie's milk intolerance (excessive, projectile spitting up with poor weight gain).  Apparently, he was having visions of a milk allergy and then allergic eosinophilic esophagitis.  WHAT?!?!  Now being in the medical field, I am used to medical jargon, but I am not used to big ugly, multi-syllable words like "eosinophilic" anything with regards to my dear sweet baby Bear.  So imagine his (and mine) relief when the skin test came back negative for milk. . .as did peanuts, walnuts, cashews, almonds, and oats.

Wait. . .

Oats?????

OATS?!?!?!

Yes, oats.  Then, are you ready?  The IgE blood test for oats-also negative :-)
*As per Dr. L, the skin tests are much more accurate than the IgE blood tests.  The blood test was ordered by PCP.

Again, jumping up and down for joy.  Yay!  Happy!  Yippy!  My-kid-might-be-able-to-have-Cheerios yippy!

Next up, an in-office oat-tolerance-feeding-test with the allergist.