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).

I...er I mean.... She Did it!

To the other places..

"Out there things can happen and frequently doto people as brainy and footsy as you.And when things start to happen, don't worry, Don't stew. Just go right along. You'll start happening too. "-Dr. Suess (once again from Oh, the Places You'll Go!)



My nerves are shot. The pit in my stomach feels endless.

Tomorrow at 12:05 a yellow school bus with the Jefferson County Public Schools insignia predominately displayed across it’s middle will pull up to our curb. This 13 ton vessel of steel will transport my daughter (and all that goes with her) twelve miles (that’s an hour or bus time) to Fletcher Miller Special School where she will attend her first day of preschool.

And I will be at work. Where I should be. Because if I wasn’t and I had to watch that 13 tons of steel drive away with my daughter- the first time she will be in someone else’s care outside the home (and hospital, of course) the strongest prescription of Xanax wouldn’t suffice. So I will sit at work, watching the clock, counting down every minute until my baby girl begins her first day of school.

And she will enjoy every minute of it.

This might come as a shock with the post that preceded this one, especially when the next few months hold such huge implications for Faith’s future health. Yes, we are running the risk of exposing her to lots of germs- ok it’s not even a risk- there will be lot’s of germs. Yes, she is bound to catch a something. Yes, this could risk her not being able to have the necessary surgeries that could result another year with the trach. But really when it came down to it there was no choice.

Childhood is waiting, and it’s time for Faith to have her fair share.


:) J & CO.

The Waiting Place

"You will come to a place where the streets are not marked. Some windows are lighted. But mostly they're darked. A Place you could sprain both your elbow and chin! Do you dare to stay out? Do you Do you dare go in? How much can you lose? How much can you win?"-Excerpt from Oh, the Places You'll Go by Dr. Seuss

I have been hesitant to post because I so desperately wanted to write that Faith is back to her healthy, vibrant three-year-old self but that's just not true. She's yet to make a full recovery from RSV and in fact has gotten worse then she was about a week ago. We managed to wean her off the vent at night only to have the docs tell us to out her back on (Ugh). She is most likely fighting a post-secondary infection (like pneumonia). During the day she is happy (when she is not coughing/gagging) but nights have been another story. The constant suctioning and fall out from the steroids (which they want her on for two more weeks!) have meant little sleep in our home.



On another disappointing note we had to reschedule Faith's tonsillectomy/bronch that was set for Monday. This was a step in the direction that would lead to reconstructive surgery, which might not even be a possibility due to her recent time on the ventilator. That's the million dollar question for which I have no answer for. When I was probing our ENT's (the person who will ultimately make that call) nurse she said that this recent bout of illness has definitely set Faith back. When I discussed this a day prior with her pediatrician I received the, "if Faith needs another year with the trach/vent then that's what she needs."



For me it's not about the trach. Heck, we'd much rather have Faith on oxygen with a trach than a nasal cannula. The part that's difficult for me is that it means one more year of silence. Living with a child who cannot make noise is pretty depressing some days. If she could make noise with her trach I'd say leave it in.

Ok now I am getting all dramatic. Nobody has said that the reconstruction is NOT going to happen but some have hinted that it's probably not going to. Ultimately we just need to trust that God is in control and His plans are bigger than ours.

Thanks for checking in!
Jen :)