Faith is 4 today!

Everything we didn't (and some we did) show you from Faith's 3rd year of life...

Merry (almost) Christmas!

What can only mark the arrival of the Christmas season in the Reming household other than the steady stream of sub-par Christmas movies w/predictable, unrealistic plots on the Lifetime network that I just can't seem to stop watching (it's like a horrible accident on the side of the road- you just can't help but take a look)and my insistent need to begin blogs w/run on sentences? Ah, yes, the awkward Santa photo. For three years running Faith freaked when she approached the man in red which resulted in another momma-being-groped session and left her father with no choice but to stand awkwardly beside it all. Holly jolly Christmas indeed (and once again a little too jolly for Mr. Kringle).


We are officially on winter break and officially enjoying the season. Faith is very much into everything this year and when asked what she wants Santa to bring her she signs, "train" and "barbie car." (Could we have asked for a more balanced toddler? I think not).


Brian's mom is in town for the week so Faith has been receiving lots of love from her Buffalo Grandma. Now if we only could get some snow I think we'd have a picture perfect Christmas.




A little update on the school situation, beginning in January Faith will be visited by a home bound special ed. teacher provided by the district for three hours a week. I think Faith is the most over serviced child in the state (which of course is a really good situation to be in.) She receives home visits from her speech therapist, occupational therapist, and physical therapist each of whom come 2 times a week (for a totally of 6 visits) and we've just started taking her to a feeding clinic at Children's on Mondays. So with her addition of the home school teacher she's maxed out on adults (now only if we could have some kid therapy in there..) After just writing that I realize that might have sounded negative but in reality we have one incredible team of professionals that surround our family.

In keeping with the randomness of this post, my goal this break is to get Faith to wear her eyeglasses (y'up, she still has glasses, you just never see them in pictures b/c she whips them off her face faster then our camera's shudder speed.) I'm on the hunt for "princess" glasses so if anyone happens to come across any let me know (and they have to have an actual princess on them- when I showed her a pair of glasses inspired by Disney princesses she called foul and refused to allow them within 6 inches of her face). We've come to an agreement that if momma can find princess glasses she will wear them (just like the other day I came home from work and she greeted me at the door by requesting a princess potty...we're still negotiating the terms in that contract).



Looks like our little girl is growing up!





Hope you all are enjoying the holidays- it all seems to be coming and going very fast this year, but I hope you are able to savor the season.





Jen & CO.

Eeek! You know it's bad that you haven't updated your blog when your camera is filled pictures from two major holidays, none of which have been uploaded..and another one is just rounding the corner.

Busyness aside (which is excuse that can only go so far), I think I've avoided updating because I'm really not sure what to say...Faith is "good" but not "great."

Faith has had two bronchs since her first utterances of Momma. The Bronch in October did not look so hot, last week's bronch showed improvement. While her breathing is not labored or stridorus, it is still not normal. She's been struggling with a bout of croup for about 6 weeks now which results in long nights of coughing fits.
Other than that we can't complain. Faith doesn't have a hole in her neck, which I suppose is the goal.


We have been advised to keep Faith out of school for the time being. Something I am having a very difficult time coming to terms with. If you could see her face as it lights every time she runs to thw window as she hears the breaks of the garbage truck thinking it's the bus stopping to take her to school it would make you sad. If you could see how over the past month she is not as affected by the noise of the garbage truck's breaks, it would make your heart melt.

Faith's airway is still considered unstable and exposing it to the petri dish that is her school would not be wise. That still does not stop us from taking Faith out and about every chance we get. She frequents libraries, museums, and Cost-co (Ok that last one's for me- is it bad that I know if I have Faith in tow I can get twice
as many samples? Hey, busy moms have to eat!) Joking aside there is not a day goes by that she doesn't sign "friends" which is just heartbreaking.

Faith spends her days with her wonderful nurse (whose been with us for over 2 years! Words cannot express the blessing she has been to to us!) My mom fills in for 1/2 days on Fridays, which of course Faith loves.

Work has been going well. Brian is teaching art at a school in downtown Denver and I am still at Greenwood (NE Denver) teaching as a math interventionist/coordinator for a teacher residency program at our school. I am working four days a week this year which allows me flexibility with Faith's constant doctor appointments and therapies.

Faith's only word is still "momma" but she uses it for everything. I don't think I'll ever get tired of hearing that. She is definitely experimenting with her voice and is making up for her lost babbling days from infancy.

And I'm finally able to report that I had my not-so-silent-mothering-moment. Three years ago a friend who's daughter was trached assured me that one day I'd be telling Faith to be quiet (she told me this while shhhing her preschooler in the grocery store.) I can now confidently say that every time we take Faith out in to public she is incredibly, ridiculously, MIRACULOUSLY Loud. And I've bitten my tongue many a times when my first impluse is to "shhh."

I cannot part without posting a pic. So here's one from Halloween. I have to admit that my years of picking Faith's Halloween costumes are officially over. And this year she chose something that we'd certainly never expect, after all this is the girl who loves dogs, alligators and dinosaurs. But she chose something that one would expect from a little girl...






Y'up. A princess. This choice not only signifies the end to my involuntary torture of Faith in subjecting her to my choice of Halloween attire, but assurance to Disney shareholders that the stock is secure as they have nabbed another consumer. It was only a matter of time and while she is still demanding dinosaur rides, it's with a tiara on head and wand in hand. And after all she's been through she can have any kind of ride she wants.


Thanks for checking back, I promise to end my blogging negligence!

Jen & CO.

How sweet the sound....

Make an on-line slideshow at www.OneTrueMedia.com

Several weeks ago I wrote a post that mentioned Faith's favorite books are from the How Do Dinosaurs series. In a serendipitous turn of events, a reader (and author, see her books here) who happens to read this blog also happens to be friends with the author of the How Do Dinosaurs series, Jane Yolen. Within a few hours I received a lovely e-mail from both authors. A week later a package arrived at our door filled with dinosaur goodies (books, a DVD, stuffed animal, etc). Last week when Faith was in the hospital, another package arrived, this time it was the just released How Do Dinosaurs Laugh Out Loud? book, signed by Ms. Yolen herself.

The teacher in me was ecstatic to have an autographed copy from such a celebrated author. The mom in me was touched that someone whom we've never met reached out and made our little girl's day.

Here's a pic of Faith "roaring" with her new dino friends.

As it turned out we were on the cutting edge of learning how dinosaurs laugh and we're on the verge of hearing Faith's. When she laughs we definitely hear more air behind it, but it's still a work in progress. For now she's enjoying ROARING with her new dino stuff, and we're loving every minute of it.

A special thank you to Margaret, Heidi, and Ms. Yolen for helping bring out our little dino's laugh.

Jen & CO.

PS: In my excitement I forgot to mention Faith's breathing, which has greatly improved since my last post. It's not perfect, but it's livable. The coming weeks will be telling as Faith is coming off of heavy doses of steroids, which have a history of masking some her her underlying issues.

SOS!

****Update*****

Just wanted to give you a quick update that Faith is home. The bronch looked "OK" but we still have a long road ahead of us. They did another dilations to balloon it open. Part of the graft also appeared to be "dying" which means there is risk for infection. They will take another look in 1-2 weeks. For now she'll wean off the steroids which will be the ultimate test (can her airway stay open without them?)

Keep the faith!
Jen

Help! We're being held hostage by the hospital!! Ok not really, but it's true they are holding us against our will. ;) Faith is her typical active self but the staff does not feel that she is safe to go home yet. Plus, there is still a debate on whether or not heated high flow (which she is on) can be done at home.

The pulmonologist on service this week made a comment that we are walking a very thin line. He also warned that this will be the most dangerous and critical respiratory season for Faith and we will be seeing these four walls of the hospital a lot. Her airway is extremely narrow and the tiniest bit of inflammation can (or in words, "will") cause need for intubation.

We learned some new information last night that answers some questions we've had. The reason why our ENT isn't quick to re-trach is that one of the grafts is directly over where her stoma (trach opening) was. This is why Faith was never able to have the reconstruction and the trach at the same time. This is also why the decision to "tough it out" or re-trach has not been black and white.

So the plan is to do another bronch tomorrow. If everything looks "OK" (I use that word very loosely....with such a narrow airway perhaps a more appropriate term would be "livable" or "sustainable) then the soonest we can go home is on Friday. Although in rounds today it sounded like we'd be staying through the weekend.

It's very difficult for Faith to sleep in the hospital and she (and her parents) have been doing very little of it.

We'll let you know what we learn from the bronch.

Thanks for checking in,

Jen & CO.

Just a quick update to say that Faith transferred to the floor yesterday and is in very good spirits. :) She is alert, active, and happy (during the day, nights have been another story). She has been on a high flow nasal cannula, which has been a nice alternative to the bi-pap. The only downside is high flow doesn't exist at home. Hopefully tomorrow we'll talk to the docs about making the transition home in the not too distant future.