Thursday, February 26, 2009

The Saga Continues... (and with that title you now have permission to stop reading!)

Ok..I'll be honest.

I haven't been updating the blog recently because...

A.) We've been suuuuuper busy over the past couple of weeks....

but mostly B.) In following with the rule I impart on my students, "if you don't have anything nice to say, then don't say it at all" I'd be a hypocrite if I did.

After finally recovering from the respiratory slaughter, Faith finished her antibiotic on Tuesday then botta bing, botta boom it hit us like a ton of bricks by Wednesday night. The G.I. bug from "you know where" is back (remember him from 10/07 and 10/08...y'up we sure do) and Faith has been miserable ever since.

You know that terrible feeling you get in your gut when you need to throw up? Remember how good it feels (in a sick sort of way) after you've done the deed? Well our little girl cannot throw up because her stomach is tied off. The result is hours upon hours of retching (now I know how you feel Tina!) and it all coming out the other end. It may sound nice, but trust us it's not pretty. Watching her toss and turn, moan and groan and not be able to do a darn thing about it, is torture for everyone involved.

Faith is also running a high temp. which surprisingly rare for her. I can count on one hand the number of times she has had a temp, and that's through many bouts of sepsis!

So that's where we are tonight. I'm begging...pleading....givng my first born (ok not really..) that we will not get this, too. The other two times Faith had this it came for us days later. The only thing more difficult then taking care of a trach/vented baby who cannot throw up is having to do it from the lavatory..yeah you got it..not a pretty picture.

Uh-oh..... there I go again. I didn't hold true to my word...well I had to post something...or you'd really think we'd actually fallen in the commode.

Ok enough potty talk for one post.

Thanks for hanging in there w/us,
Jen & CO.

PS: Yes, this is messy, icky and miserable, but I'll take a G.I. bug over a respiratory issue any day. (I may be retracting that statement at 2am tonight!)

Monday, February 16, 2009

Once Upon a Nightmare..

If I had not already reached my "feel-sorry-for-my-sleep-deprivation" quota for this month, I'd tell you the tale of the Massacre of St. Valentine. Reming-tine:

In this tumultuous tale, a two-foot tall two-year-old simultaneously took down two grown adults and had them on their knees begging for mercy by the night's end.

While the two crusaders hoisted their white flag, pleading for a truce to be made, the two-year-old duked it out with her own nemesis; the serpent suction machine. The 22 pound tiny warrior was no match for the roaring, twisted dragon that breathed down her neck hour upon hour...

But alas, this far-from-fairytale does have a happy ending. See, by dawn's early light, wounded from the battle, the Knight in Shining Armor came to rescue the Damsel in Distress, barring gifts that could come from no place other than Camelot; Chocolate, flowers, and a spa package. No, it cannot be afforded, but if I may be as so presumptuous to say, *ahem* ...........well deserved?

And as for the little warrior, you might ask? After a long pilgrimage to a land far far away, and after having to fight completely different sort of battle (which included it's own cast of antagonists) she was given a magic potion that will attempt to tame the ruthless adversary that infiltrated our humble abode.

OK......I know what you are thinking.....

Give me a break!

If I haven't already won the award for "Most Dramatic Mom of the Year", this account certainly puts me in the running. ;)

(Coping mechanisms, else do you expect us to get by?)

Hope your Valentine's day was equally as rewarding,

Jen & CO.

Wednesday, February 11, 2009

Two Years Old and LOVING IT!

My daughter turned two and I forgot how to blog! Really, this week has just slipped away from me. So here's your weekly update:

Faith had a very nice birthday. We kept things very low key this year (I know, those of you who know me are wondering how that is possible). Faith spent the day of her birthday being evaluated for an augmentative communication device (more on that later) which was pretty cool. Over the weekend we had a little family party, once again keeping it simple. :)

As usual the opening presents thing was are some pics from her soecial day:

I may only be 2, but c'mon Ariel, those shells can't be real!

Ok guys...what the heck is THIS supposed to be?

Really, Mom? A play kitchen? I know we are living in a post-feminist society, but don't you think this is reinforcing stereotypes we've worked so hard to nullify?

Who needs cake when you can have some rim? And they say I have an oral aversion...

FINALLY, they listen to me.... What a girl REALLY wants....

Here are some shots from our little get together this past weekend:
An OT's dream: While this appears to be a typical picture from a 2 year-old's birthday, we have never seen anything like this before! Faith FREAKS whenever she touches anything food realted. She's gone through lots of therapy to "desensitize" her to textures of food, but she HATES every minute of it. So when she GRABBED the ice cream container and started playing with it, we were AMAZED!!! (not only is it FOOD, but it's COLD!!!!) Looks like all that time spent in the dogs' bowls is paying off....

Now, we are not ones to get all fancy and put Faith in a dress (when your child doesn't walk, it's really impractical) but we couldn't resist when uncle Josh gave her this beautiful brown dress last Christmas. Not only was it as cute as can be but it served multiple purposes as it immobilized her enough to actually sit still.
This is one of those "you-had-to-have-been-there-to-appreciate-it" pictures. Since we do not take Faith out (respiratory season isolation) she doesn't get much interaction with kids, yet alone get up close an personal with one! So when my brother's girlfriend's son came over, Faith was completely enamoured with him. It was too funny. It was like she said, "enough with these boring adults, I wanna play with someone my own age!" Poor Gabe was tortured as he tried to play video games.

So that's that. Our girl is now an official 2 year old and although she seems very "un-two" we really don't know any different, so it's OK with us. I still cannot believe that we have ALL made it this far! Here's to many more 2's to come!

Thanks for all of the birthday well wishes!
Jen & Co

Wednesday, February 4, 2009

For our little butterfly, on your birthday....

Too soon you left your Mother’s watery embrace,

Too soon you sprung from her internal nest,

Too soon the gift of you unwrapped…

And yet, sweet child, you were on time.

On time to tell of Cradling Palm and Giver of your name,

On time to force to trembling knees witness of unseasoned clay,

On time to wish our pulse and breath into your fragile frame…

On time, sweet child, on time.

And what of tomorrows – yours and ours?

Of dreams long held and dreams unspun?

What of the Promise with which you came?

The Promise lives, the Promise waits,

To enfold you in His strong embrace.

From distant worlds you arrived on time

To a place prepared you shall return, in time.

And of the interval inbetween?

And through each eternal spring?

You’ll share our hearts, our love, our faith,

O precious child, who came on time.

-Sharon Morcos

Happy Birthday precious Faith! We love you!

Mommy & Daddy too

Tuesday, February 3, 2009

Growing Pains

I knew I had officially grown up last October when the flu ransacked our house and everyone was left to fiend for themselves. Brain had his head in the toilet the whole night, Faith was gagging and retching (because of her Nissen she cannot throw up) and I could barely walk because I had just had surgery on my leg the day prior.

Faith needed to be suctioned, her crib needed to be changed (when you can't throw up it all goes out the other end) and I was in immense pain. As I lay there realizing the crappiness of the situation, I came to the realization that this was what it meant to be an adult. Forget leg pain, forget the stomach flu. It's my resposibility to take care of my sick baby, and no one is there to take care of me, not even me!

A similar (although not as nearly severe) situation occurred last night. We avoided the hospital this weekend and it looked like things were on the up and up. Until last night all hell broke lose and it was another miserable night of non-stop suctioning and non-sleeping (although the latter is not unique in our house). While nothing compared to the stomach flu, Brian and I caught whatever Faith had and have been battling our own illnesses.

All I wanted to do was take some NyQuil and go to bed. But I couldn't. I couldn't even lay down because every time my head hit the pillow I would need to suction Faith again. This is the difference between a typical child having a cold and our child; suctioning. There is nothing I despise more than the sound of the suctioning machine slicing through my migraine at 3am...that and the non-stop alarming of the vent every time I "make a pass."

I couldn't help but loathe in a little self-pity as I realized that my child would be turning two years old the following day and she has yet to ever sleep through a night. Forget sleeping through the night, at this point we'd be happy if she slept through an hour.

The difference between last October and this year is that I handeled the situation with a little bit more maturity this time around.

At 4am when Brian came in and realized that not a wink of sleep had been had, he pleaded with me to call in sick. Knowing full well my alarm clock was going to be going off in the next hour, I reluctantly said no. And then he said something that struck a chord with me. He remarked that If any of the teachers at our school experienced one night like we had just had, you could bet your bottom dollar they'd call in, the only difference between us and them is that we do this 3-4 times a week (OK the bottom dollar part was me..Brian's not that cheesy).

He was right. And I was tired. And the difference between last October and now was that I knew our nurse would be here in the morning. A nurse I trust. A nurse I could shut my door and sleep the day a way without ever worrying about my daughter.

Around 6 am I caved in and called the sub line, e-mailed my colleagues, took a swig of NyQuil and I finally grew up.

-Jen :)