Best Laid Plans

If we were here:









We wouldn't be able to be here...

And we certainly wouldn't be able to do this...



And this would be out of the question...


Exploring new places....?


Meeting new faces?



Forgetaboutit!







But while the whole situation still rubs us the wrong way..



Least we forget that we still have this..




So we pledge to do less of this...


And a lot more of this...



So it's time to put on our big girl/boy panties hats and see where this new detour takes us.



Thanks for all of your words of encouragement. They mean the world to us.

Promises to update more often,
Jen & CO.

PS: Faith finally turned a corner today. She is now walking (for those of us who know her spunk it's hard to imagine that she wouldn't walk for 9 days) and our diaper quota is back to normal.

Last week I had written a post I had intended to publish titled, "What we are looking forward to most..." It was not hard to come up with a very long list of what this surgery would mean to our family...and most importantly to Faith.


The number was being able to hear her laugh.

Three years ago we met a family who had a daughter who had been trached. I'll never forget when the mother told me that hearing her daughter laugh after decannulation was her number #1.

"That day will come for you Jen," she encouraged "someday you will hear Faith laugh and it will be the sweetest sound you have ever heard."

Today, we learned that that day will not be Monday, August 2nd.


Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. -Matthew 7:7-8

We have asked, sought, and knocked so hard our fists are sore.

And yes, we received.

We received the answer we did not want to hear.

But perhaps the answer isn't "no" just "not now."

Someday there will be a now...but it doesn't take away from the hurt that after getting so close...being able to hear our daughter's laughter remains a "someday..."

:'(

Jen & CO

The Numbers

2 - Very tired parents who just want one night of uninterrupted sleep.

1 - Night booked for two at Della Terra Mountain Chateau for Monday, July 26th.

177 - Days since Faith's last visit to the children's emergency department

2 - Overnight visits to the er in the last 36 hours, the first being on Monday, July 26th.

5 - The number of days Faith has been lethargic, not wanting to walk or even sit up.

10 - The average amount of diapers changed per hour due to this nasty, nasty stomach bug.

5 - Days until Faith undergoes major surgery to reconstruct her airway.

4-10 - The number of days the docs at childrens have seen this G.I. bug wipe kids out.

24 hours - Faith has to turn a corner before the surgery is canceled (their words, not mine).

1 year - The time we'd have to wait for the opportunity for this surgery again (it is only done in summer and the OR is booked solid for the next month).

2 - Very, very tired and sick parents who just want to catch a break.

Drum roll please...

We. Have. A. Date.

August 2nd.

Not as early as we had hoped, but after three years of waiting it’s soon enough.

On August 2nd Faith will undergo laryngotracheal reconstruction. We are still unsure of all of the details but found this great website that describes the procedure:

http://www.cincinnatichildrens.org/health/info/ent/procedure/ssltr.htm


Faith will need both an anterior and posterior graft (from rib cartilage). We have been told the recovery for this will take months and to expect about a month being inpatient (now you know why we were hoping for an earlier date- our schools begin in the second week of August). She will be sedated and intubated(in an induced coma) for 7-10 days post surgery.





This surgery will be a big deal.





Not breathing through her neck and being able to vocalize will be an even bigger deal.

The scheduling of this surgery is not without controversy. On one side of the coin some feel she is not yet stable enough to go through such a lengthy surgery and the risk of her getting sick and needing intubation may result in a trach being placed again (and in the doctor’s own words, “undoing all of the work of the surgery”.)

The other side says, why hold back on “what if” scenarios. What a shame to would be if we elected not to do the surgery and she never needed the vent again?

In the end we choose to have FAITH. We choose to give her every possible chance for success that we can.




Yes, she will still need oxygen (that's an entirely different issue) and yes, trying to keep a nasal cannula on a roving toddler will be difficult but her being able to make noise when she cries, laughs, and to be able to learn to speak will be well worth it.



So until then we are going to enjoy every ounce of summer we can. We have no doubt this one is going to be very memorable!

Thanks for checking in!

Jen & CO

PS: As many of you know I am horrible at keeping up with non-work related e-mail. A fellow trach mom e-mailed me a few weeks ago and I accidentally erased it before I was able to respond. If you are that mom I'd love to talk to you more. Please e-mail me at jennifer_reming@dpsk12.org (I have much better luck with that one) :)

Chompin' at the bit

24 hours after surgery we came home.

About 4 minutes after that Faith proceeded to run around the house defying the doctor's "do not do" orders (you know running, wrestling, exerting oneself etc.)

Fast forward to the present and she is still our wild child who refuses to milk the "I-can-watch-all-of-the-TV-I-want/get-out-of-jail-pass "that goes along with surgery.

I know children have high pain tolerances but coming from someone who has had her tonsils and adenoids out (on separate occasions) I know how much it hurts...and our little girl isn't even batting an eye (and btw the only pain med. she came home with is over the counter Tylenol).

Incredible.

And now onto the question that is on every one's mind...(at least I think it is...)

What's next?

Still no definitive answer as of yet, but we get the sense that there is a big change on the way...

We'll let you know more soon!

Thanks for your prayers and well wishes,

Jen & CO.

Today's the day!

Remember how bummed we were last month when we had to reschedule Faith's tonsillectomy? Well did this day sure creep up on us or what because today Faith is getting her tonsils and adenoids out. Perhaps more interestingly to note she is also having a bronch which will hopefully begin the discussion on if or when Faith will have reconstructive surgery on her airway.

So big day for us! They want to keep her overnight so our bags are backed and we're ready to go.

Your prayers are greatly appreciated!

Jen & CO.

The Cat's Pajamas

My daughter wants alligator pajamas.

In an attempt to give our toddler her own sense of independence one of our nightly rituals is having her pick out her pajamas (Note that I am not ready for her to have this type of control over her daytime attire...she's aiming for independence not style, plus I am taking advantage of these years while I can). And every night the dialogue goes something like this...

US: "Faith do you want to wear polka dots or monkeys?"

Faith: (signs) Monkeys.

US: Princesses or monkeys?

Faith: Monkeys.

US: Monkeys or owls?(a sort of control group...you know in case her choice is based on the last word she hears)

Faith: Monkeys.

So monkeys it is and usually is (she has three pairs), until the other the night the conversation went like this...

Me: OK Faith do you want monkeys or stripes?

Faith: Alligators.

Me: Alligators?

Faith: Yes, alligators (not sure what the sign for alligator is but Faith takes two of her hands and snaps them together like an alligator's jaw).

Me: But Faith you don't have any alligator pajamas. How about the monkeys?

Faith: Alligators.

As it turns out this was not the first time she had made such an eccentric request. When I summoned Brian into the situation he said that she had asked for alligator pajamas earlier that day (we're both not sure how she got that point across since neither of us knows the sign for pajamas or alligator).

This prompted my relentless search for alligator adorned pajamas (which has been extremely difficult because apparently manufacturers have the impression that five year old boys are the only interest group of predatorial reptiles.) This also prompted the realization that our little girl has reached a new level of independence. That night marked the first time she "talked" about something without us giving her the words. Up until this point her vocabulary has been one dimensional. She can only say things that we teach her and only says them when prompted. This often causes us to wonder what she thinks about but cannot say. That night she had her own thoughts and opinions and by george monkeys just wouldn't do. Even more impressive, she was able to say it.

So the search for alligator pajamas continues meanwhile we have taken her to the zoo JUST for the alligator exhibit, watched The Princess and the Frog (where I think her fascination with alligators began) numerous times, and replaced any and every familiar song with an alligator(turns out Old MacDonald might have had a farm in Florida...)

And whatever is going on in that little head of hers keeps snapping (yes, pun intended) 'gators and all. :)

Jen & CO.

PS: It's kind of a non-event for us this year but just wanted to get the word out in case I get any "you didn't tell us"comments after the fact-The March of Dimes' March for Babies is this Saturday. If you haven't got anything better to do then walk 6 miles in the rain (yes, rain again!) then come join us. We're meeting at Civic Center Park in Denver at the MOD family tent at 8:45).