Hope you are all having a very merry Christmas.

Us. :)

Dear Santa, waiting to see if we made the list...

Would you believe me if I told you....

That they did this all on their own? Well, it's true. :)

If you haven't heard from us in a while it's because "all is calm, all is bright."

We've had a very uneventful transition into winter- just the way we like it. Last July Faith was put on a prophylactic antibiotic. This is what's kept her out of the hospital. Just when it looks like she is going to get really sick, she recovers. It's amazing! She even was exposed to the swine flu a few months ago, and other then coughing blood for a few weeks came out unscathed. In addition to the antibiotic, she is on an inhaled steroid which is also boosting her immune system.

As I posted last summer, this winter has huge implications for what this next year holds. If she has a "decent" cold/flu season she will be a candidate for re-constructive airway surgery this summer and if successful would mean decannulation.

Brian and I are looking forward to a two week break from teaching. We love what we do, but it will be nice to just hang out with our girl (btw, Brian's school was on the front page of the Denver Post today, neat little story here).


For those of you who have not done so already, you can sign up to receive e-mail alerts when the blog is updated. I always feel bad when people tell me they check the blog so frequently and I have not updated in a while. I will be sure to update more in the coming weeks...it's a much more manageable task when I am not working.

Hope you are all enjoying the Holidays!

Jen & CO.

I know I am a week late and a dollar short on posting Halloween pictures, but better late then never, eh?

We had a great Halloween night. We actually took Faith Trick-or-Treating! Always the social butterfly she enjoyed herself (and we enjoyed eating all of her candy!) ;P

Unlike the past two years, I had no agenda for what I wanted Faith to be for Halloween. We didn't have to think too hard about what Faith would want to be if she could speak for herself. In fact, sometime we think she things she is already one!



So without further ado may I present to you our third canine companion..

Ok, I know she looks more like Max from Where the Wild Things Are, finding a puppy costume was a little tricky this year (that and she had already outgrew one I purchased for her a month ago...)


Hitting the streets w/Grandma by her side (and yes, all of that snow melted the very next day...something you'd only understand if you lived here).

Hmmm..perhaps this is why our approach to Faith's feeding therapy isn't panning out.
Faith's favorite part of the evening was greeting the trick-or-treaters who came to our door. Every time the doorbell rang she would run to the door (little did I know learning all about Pavlov in college would apply in such a circumstance).

These aren't the best pictures but they do capture her adoration for her "brothers"- I just couldn't resist.
Hope you all let your LIGHT shine this Halloween!

Jen & CO.

A Not-So-Spooky Tale

'Twas the day before Halloween when all through the Reming abode
Not a machine was alarming, not even the heater set on invasive mode.

The g-tube extensions were hung to dry by the sink.

due to our little girl who will still not take a drink.

No one was nestled all snug in their beds,
for life with a toddler brings an early wake up call instead.

When out on the lawn there arose a clatter
As Faith sprang from her chair her tube feed went splatter

Away to the sliding glass door we flew like a bird
We opened the blinds and saw something truly absurd.

When what to our wondering eyes should appear,
but two feet of snow, alas, Faith’s final frontier.

With a little toddler at our feet, so lively and quick
We knew that her first time in the snow would be a kick.
More rapid than doctors running to a code,
We knew that our girl was ready to hit the road.

“On Elway! On Buffalo, let’s go,

it’s only October and I've never seen so much snow!

As we stepped outside we thought she'd want to flee

but to our surprise, her face lit up with glee.
We had not a sleigh in sight, but the laundry basket would do,
We pushed on the boons, and her oxygen tank too.

She spoke not a word, but we knew what her smile meant,
We knew if she said "no", she’d surely relent.
With her fists in the air she signed, “C’mon, let’s Go!”
So her daddy pulled her through the mounds of snow.



Her mommy stood there documenting everything in sight
For Faith’s first experience in the snow was a pure delight.

Oh what a day, oh what heaven!
How far she’s come from room 827
For this is what boots and jackets are for,
Not collecting dust as a child lives on a hospital floor.

While the pumpkins may have gone rotten on the front porch due to ice,

This year's Halloween has turned out really quite nice.

For in life we have learned to take each day with stride,

even if there is snow, hop in and enjoy the ride.

So whether this year brings you ghouls, goblins or a vampire bite....

Happy Halloween to all and to all a good night.

October just wouldn't be complete without a trip to the pumpkin patch, nor would our blog be without the traumatic pictures to show for it.

Enjoy.








Still traumatized from last year's "mom-forcing-me-to-sit-on-a-pumpkin" debacle, Faith was not going to make that mistake another year.

Oh thank you for saving me daddy, you are always the voice of reason in this relationship.

The highlight of it all, of course was the petting zoo. Faith lights up whenever she sees a furry friend. She is completely trusting, and laughed when the animals gave her some nibbles.

da-na. da-na, da-na-na-na, da-na-na-na. Faith's proximity to animals should come complete with an alarm playing music from Jaws- a warning that the animal torturer is near.

"Hmmm...you know they make g-tubes so you don't have to deal with that sort of thing Mr. Cow"

I could probably come up with some cheesy "seeing eye-to-eye" pun for this one, but I'll spare you the cheese.

Yes, we let our 2 year old daughter stick her hand in a horse's mouth (no, there was nothing to feed them, just fingers) And they say we have a hard time "letting go."

And yes, as we made plans for the patch that morning I had a fluttering of hope that I could finally get the "perfect" hay bail picture we failed to capture last year.... Yes, perhaps without lugging a ventilator around (I still cannot believe we did that) this would be the year we'd capture our little pumpkin sitting poised perfectly on top a hay bail.....

Turns out, the ventilator had nothin' to do with it.

Sera, sera.

October takes the cake (or should I say, pumpkin pie) for being is busiest month of this year. In the past few weeks we've battled H1N1, job loss (and then job-gain), car woes, and multiple weddings. The latter of course, being the highlight of it all.

This past weekend my brother Josh married his beautiful bride, Noel.
This was Faith's first wedding and will surely be her last (well, OK not for a long time.) Simply put, toddlers and weddings do not mix. With the help of Brian's sister Kristen, and my cousin Margie, who helped out tremendously by corralling Faith (carrying an oxygen tank and chasing a toddler in heels is no easy feat), we had a lot of fun.

Per usual with these type of events I got home realizing I did not take enough pictures (especially of the actual wedding) but here are some snip-its from the evening:

The happy couple.

Dancing queen. All Faith wanted to do was dance- even into the late hours of the evening when her droopy eyelids were giving way, whenever we stopped dancing she'd point to the floor demanding more.





Run Faith, run!

MMm'mmm...who needs wedding cake when you can have frigid glass?

And speaking of weddings, five years ago today, Faith's daddy and I pledged to love each other through "sickness and in health" on a blistery October day. Never in a million years would I have imagined facing such adversity with my husband. Never in a billion years could I have chosen a more perfect partner to walk down this path with. Today I was strolling down memory lane and came across a song we had played at our wedding. At the time, we thought we'd already been through a lot, little did we know how prophetic these words would be.

Luv ya hun!

I was gently reminded by a friend that it is now officially fall and it is not prudent to have a picture of your child in a swimming pool under such circumstances. (what if we lived in Florida?)

I took that as a hint that it is time to update the blog. Fall has brought a time of transition for us. Both Brian and I are teaching at new schools which has been an adjustment in of itself.


Faith is doing tremendously well. However cliche it may be, she has exceeded all of our expectations. The girl who showed no understanding or connections to words six months ago is now continually adding to her repertoire of about 15 signs. She now knows words carry meaning and can follow simple directions such as, "Go give Elway a hug" (which is her favorite).

The girl who would make eye contact or acknowledge people in a room is now a social butterfly who demands the attention of anyone who steps inside our home.

The girl who we took home from the hospital who clinched her fists and whose high toned body became rigid at any source of external stimuli, recently put her hands in a tub of butter while we were cooking and rubbed it all over her body.

The girl who was not crawling at this time last year is now walking up a storm, falling down stairs, and forcing her parents to put up all of the unused baby gates (remind me every time we put one up and it chips the paint on the walls that the need for such a barrier is worth far more than the drywall.)

And the girl who did not breathe on her own for her first two years of life has not been hooked to a ventilator since June.

I have stopped diagnosing her. I've stopped marking time in terms of milestones unmet and I am simply enjoying my daughter. Perhaps it was not Faith who needed to make gains, but me. Once I finally accepted who for who she is and all that she is going to be, she proved me wrong on both accords.


Thanks for keeping up with us.

Hope your fall is as warm and cozy as ours.

Jen & CO.