A Christmas Poem

Sunday, December 21, 2008

Christmas is coming,
How can you tell?
Caro's wearing red, 
And swinging like a bell.

Excited for bright lights,
Excited for fun,
Excited for presents,
And the wrappings therefrom.

Anxious for Christmas,
Why won't it come,
Caro's tired of waiting,
And getting quite bummed.

Tired of waiting,
If it doesn't come soon,
Caro may give up,
And think that it's June!

But how can I forget?
She says with a smile,
There's a tree in our house,
It's been here a short while.

And there's snow on the ground,
How can this be!
We live in Las Vegas,
It's a desert you see?

And the snow keeps on coming,
Falling far and wide,
Caro likes it a lot,
So long as it's outside.

Christmas will come,
But it won't stay for long,
So let's enjoy the waiting,
With kindness, love, and song.

Merry Christmas and Happy Holidays to everyone!

Christmas Lights

Sunday, December 14, 2008

Caroline enjoyed participating in the Christmas decorating a couple of weeks ago.  She really liked the lights.  See pics below (sorry most are blurry, but I still think they're magical.)

This Christmas has been bittersweet.  Caroline's progress encourages us (we love to see her respond to light, sound, toys,etc.), but it's so far from where we thought we would be with an almost 2-year old.  This would be the Christmas where she starts to understand and get excited about Santa and presents, where she could actually toddle around to look at the ornaments, when she might've even given us hugs to say thank you.  

It has been almost 2 years since we received Caroline's diagnosis, so you'd think we'd be over the loss by now...just accept that this is how she is and move on.  And we do that a lot of the time, but I'm not sure if the memory of those expectations, those dreams will ever fully fade.  So, we see Caroline as a "Dream Deferred" - we know that because Christ was born and died for us one day we will see her be able to do all that any other child can do - and our dream deferred will come true.  

So, we see these Christmas lights that Caroline sees and remember the Light of the World who gives us wonderful hope in a life to come....

Looking at the lights and smelling the fresh Christmas tree

Daddy showing Caro the tree

She liked to touch the branches...

...and she liked rubbing her feet on the pine needles.

This pic was taken during another decorating day (we had to do it in phases this year).  She got so tired from all of the excitement.

"Over the River and Through the Woods..." or "A Visit to Grandpa's Gun Shop"

Wednesday, December 3, 2008

Yes, both titles could apply to a post about our Thanksgiving trip to my grandparents' house in Palm Springs....

After a yummy and comfort-food-filled Thanksgiving dinner, in the midst of a typical post-feast evening - watching football, eating pie, flipping through Black Friday ads - Bryce said, pointing to a few gun ads, "let's get one of those."  I shrugged "hmm, I don't think that's really my family's thing..." to which he countered "I bet your Grandpa has a gun."  

So, after my dad agreed w/B's suspicions, we turned to my Grandpa and asked him, and boy was I wrong!  My grandpa confirmed, "yes, I think I have a few."  Well, my brother started exploring the house to find them, and below you'll see that my Grandpa did indeed have "a few" guns...

A family that weaponizes together stays together.

Ok, that's the main story from the trip, but we did have fun showing off Caroline to everyone...

Caroline in her positioning chair (Bryce is spotting her, but she can hold up her head in this chair [a Rifton chair made by the Amish!] for much of the time.)  We call it her school desk.

GGma and Little were buddies...

Finally, we did a full family photoshoot w/Mel's family friend, Paulette Blomquist.  We love the pictures she took - she really captured Caroline!  I've posted some below of me, B, and C below...but I'm reserving some of the whole family for the Christmas card we hope to get out by mid-March : ).  Enjoy!

Caroline on TV!

Monday, November 10, 2008

Well, not really but very close...

A family with a little boy w/9p deletion was given an Extreme Home Makeover.  Caroline also has 9p deletion (plus 1q duplication), so it was great to see someone with facial features and characteristics so similar to Caroline's on TV!  This episode meant so much to me - I was crying as soon as I saw the little boy.  He is one of twins, and his name is Evan Martirez (see above for a pic of Evan in his walker).  He doesn't have as many medical problems as Caroline, but the diagnosis is so similar and it gives us hope that, one day, Caroline will be as mobile as Evan is.

It would mean so much if you would take a moment to watch the first segment of this show.  To do that, you go to Extreme Makeover:Home Edition, then click on a box on the right of the webpage titled "CATCH UP on recent episodes ONLINE NOW".  Then, it will ask you to install a launch player - do that - it goes very quickly.  Then a window called Full Episode Player should come up.

After that, click on "Watch the Latest Episode" - or, if you see this after Sunday the 16th, it's Episode 7: Martirez/Malik Families (from November 9, 2008). 

I know this is a bit of a pain, but please take the time to at least watch the first segment (where they introduce the family).  It's wonderful to see families that are different from the norm be given a chance to be understood.

Thanks and let us know what you think!

A Pumpkin's Story

Sunday, October 26, 2008

Caroline loves Halloween...

because her hair matches all of the festive outfits.

She still doesn't know what her costume will be..., she decides to use her "i"Phone (the "i" stands for imaginary:) to call Gma and ask her...

.... but then she decides whatever Mom and Dad pick out is fine with her...

...and she falls peacefully...


Celiac Attack

Sunday, October 12, 2008

Not wanting Caroline to be the only one in the fam w/a rare genetic disorder, Bryce was diagnosed with Celiac Disease a couple weeks ago.
If you haven't heard of Celiac Disease, it is a digestive disorder caused by an autoimmune response to foods containing gluten. The only treatment for this disease is to go on a life-long gluten free diet. 

He had none of the common symptoms of celiac; the only way he found out about this was because he happened to get a blood test for some additional life insurance, and it showed that he had elevated liver enzymes. After numerous doctors' visits, various tests (including a liver biopsy) and blood tests, his internist determined that he should have a blood test for celiac. The test came back positive. Then, to confirm that he did in fact have celiac disease, he was referred to a GI for an upper endoscopy where he took a biopsy of his small intestine. The scope revealed that his small intestine was stripped of villi and damaged. The biopsy confirmed that he has celiac disease.

Even though he currently has no symptoms, his GI said that, if he does not adhere to a strict gluten free diet, he will begin to present symptoms of celiac. In addition, and most importantly, failure to adhere to the diet will put him at a high risk for cancer in his small intestine, which is apparently very difficult to treat and has a high mortality rate.

Celiac disease is genetic and is not that uncommon (1 in 133 people).  Gluten is in foods like: bread, pasta, pizza, cookies, cake, pie, flour tortillas, beer (a real sacrifice for B :), most soy sauces, most oats - anything with wheat - pretty much our whole diet:).  

It's not the ideal thing to deal with, but we feel blessed to have discovered it when we did and that is wasn't a more severe diagnosis.  We can make this change and soon it will become easy.  Like I said in a previous post, I'm currently working full-time (fundraising for a county commission candidate), so this hasn't exactly been the easiest time to completely alter my family's diet, but we're adapting.

For more information on celiac disease, go to:

Also, don't worry about us, his doctor said that if he adheres to a gluten free diet, his small intestine should repair itself within a few months and his liver enzymes should return to normal. Then he'll finally be able to get that extra life insurance : )

Healthy and Happy

Wednesday, October 8, 2008

Grandma S visited and did a photo shoot w/her girl

Grandma loves hair accessories for Little

Good news! Caro saw her GI yesterday.  She weighed in at 28 pounds 0.5 ounces (50th percentile) and is now 34 inches long (75th percentile).  No changes to her feeding schedule (same since April). She just keeps growing!

Photo Shoot the Sequel "Because what else is there to do"

Monday, October 6, 2008

Pictures of Little from Sunday afternoon 

Her new fave toy - she likes the texture on the bee's wings

Our angel 

There's a bee on my head

She's getting to be a long one...

Her sitting is getting better and better

...but she still has to do tummy time

"Seriously, Mom?"

"Fine, I'll push up, but I won't like it"

A well-deserved nap

Basil Exposition

Tuesday, September 16, 2008

"The recipes on your blog always look good, but they also look complicated. Give us easier recipes!"

That's what I heard a lot at a recent family reunion. So, as a shout out to my beloved family, let me share two great things that contain my favorite herb, BASIL.

The first is our favorite after-church meal.  No title for this one- it's just fresh basil, fresh mozzarella, and sliced tomatoes sprinkled with cracked black pepper, kosher salt and a drizzle of extra-virgin olive oil. Serve that with slices of your favorite baguette bread, toasted (I love Cracked Wheat sourdough bread from TJs) .

You make little open-faced sandwiches - take the bread, put down a leaf of basil, a tomato slice, with the mozzarella on top. (Because it's meatless, some may not consider it a meal but it really is - filling, delicious, and so easy.) We have a tradition of eating this after church while watching a Masterpiece Mystery.

Second, it's a delicious recipe for the grill and very easy (no picture but just trust me):

Basil and Garlic-Slathered 
Chicken Breasts
(Renee Schettler, July 16, 2003,
(4 servings)

3 cloves garlic, finely chopped

1 teaspoon salt

1/2 cup chopped fresh basil (may substitute other fresh herb)

1/2 teaspoon freshly ground black pepper

Olive oil to taste, plus additional for the grill

Few drops lemon juice (optional)

4 boneless, skinless chicken breasts (about 1 1/2 pounds)

In a food processor or a mortar, process or mash the garlic together with the salt. Add the basil and pepper and continue to mix until well combined. Add just enough oil to make a paste. If desired, add a few drops of lemon juice. Set aside.

Pat the chicken dry. Place the chicken between 2 sheets of wax paper or plastic wrap and, using your hand, a skillet or a rolling pin, gently flatten it to an even thickness of about 1/2 inch. Transfer to a resealable plastic bag or a plate, add the basil paste and shake or smear to coat the chicken evenly. 

Preheat the grill or place a grill pan over medium-high heat. Lightly oil the rack or pan.

Grill the chicken, turning once, just until cooked through, 3 to 5 minutes per side. Serve hot.
Per Serving: 156 Calories, 5gm fat, trace fiber

Back in the Saddle Again

Sunday, September 14, 2008

Hello, everyone!  Sorry we've been so remiss in our blogging.  We've received several complaints, which have been noted and filed with our complaint department.  Please think of the extra pictures below & the smiles in the pic above as an olive branch.

Life has been very hectic.  I'm currently working full-time again (just til November - more info later), and by full-time, I mean FULL, as in all-of-my-time!  As you can see, Little has been a busy bee too.  Yes, that's only one hand of support.

She even sat up by herself for about a minute at therapy the other day.  

Her rolling is coming along nicely.  She's practicing more and more (you'll have to trust us as there are no pictures on file).

She finds it easier to play with toys WHILE sitting up, another advancement.

And her smiles have become a daily occurrence...

She's a happy one.

She loves her little room.  It has been a wonderful tool; it helps with her memory, her play, and her movement (she has to reach and roll to grab things).

She gets to find toys on her own, not just have toys presented to her.

Look how big she is (yes, Mom, sorry about the diaper shot!).

From the roof of her room...

She's still Daddy's girl

...and she especially loves kisses on her hands lately.

Playing with Dad's hair, trying to keep him awake while he feeds her...

... unfortunately, not a success - her Dad's a sleepy one.

Thanks for continuing to keep tabs on us, even with our long pause in blogging!   

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