After a week of panic, we finally got word back.
For now, oral antibiotics are the treatment.
For now.
The infection they found is one they usually leave untreated.
But because of her low functions and low weight, they are treating it anyway.
For now we can breathe.
Until April when we have our next appointment.
I am still waiting for the shoe to drop.
But I can breathe knowing that if it does, it won’t be until April.
Monday morning Kennedy had her tests scheduled.
By luck (or misfortune? or happy accident?) they decided only to perform the bronchoscopy. Of course, that meant she still had to undergo anesthesia and have a tube stuck down her nose – but it was one test, not two.
Overall the test went well. They were able to get a good sample to test.
For the bronchoscopy purposes and getting the sample, it was required that they inject fluid into the lungs…of a CF patient. This, of course, “could cause a low-grade fever.”
Low-grade my ass. She spiked up to 103.6*.
In the end, it came down with Tylenol, snuggle time, and a good round of her [amazon_link id=”B005LAIHW2″ target=”_blank” container=”” container_class=”” ]favorite[/amazon_link] [amazon_link id=”B007MDB6L0″ target=”_blank” container=”” container_class=”” ]movies[/amazon_link].
Now she’s back to normal, at school, playing/fighting with her sister…and none the wiser.
Meanwhile Erik & I wait.
And wait.
And wait some more.
The test results could mean a hospital stay, a PICC line, a g-tube – any or all of the above.
Kennedy is blissfully unaware of the repercussions.
But Erik & I wait.
Waiting sucks.
Today my youngest one is (as this posts) undergoing tests that will determine further treatment. In honor of that and the indomitable spirit I know she has, I’m re-posting this post from a couple of years ago.
[flickr id=”5883282550″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”] Neither love nor fire can subsist without perpetual motion; both cease to live so soon as they cease to hope, or to fear. ~François de la Rochefoucauld
She is never still.
My Angel.
Always in motion, even at rest.
Curious about everything.
Has to touch it, feel it, question it, learn it.
The world is but a canvas to our imaginations. ~Henry David Thoreau
She sees the world with bright eyes.
Hears music no one else hears.
Sings songs of her own workings.
Finds fun and life in nothing more than a rock.
A tomboy, and a princess, all wrapped into one.
Child of the pure, unclouded brow And dreaming eyes of wonder! Though time be fleet and I and thou Are half a life asunder, Thy loving smile will surely hail The love-gift of a fairy tale. ~Lewis Carroll
She loves with all her heart.
And can melt yours with a smile.
Or one look of her big brown eyes.
A Daddy’s Girl.
My precious Angel.
A sample of the purest love. Unconditional love.
Our Angel.
Time is moving fast these days.
When I would like to sit back and breathe it in.
There are great things happening.
There are frightening things happening.
There are moments I want to hide away and pretend the world doesn’t exist.
And moments I want to just sit and enjoy.
When I was growing up I wished I was older. I wished I could do things I was too young for. I wished to be grown up.
Now I just wish for time to slow. For the days to not rush by in a whirlwind of activity and necessity.
Just yesterday I had a six year old son and was realizing that I might just be pregnant with Molly.
Now my son is a teenager, my daughters are almost 8 & 7. My marriage is ten years old. This blog is seven (really?).
We’ve gone from one neurotypical son to three special needs children.
They’ve grown up and are declaring independence and having dreams of their own (A doctor! A model! A teacher! Oh my.).
My husband has had his struggles and we’ve had ours together.
What I wouldn’t give for a chance to take my family outside of the home equation and give us time away. It isn’t in the cards this year, it never seems to be..and we’re running out of time.
Time that is moving way too fast.
Because soon, Denver will be in college. The girls in high school.
And we’ll blink and they’ll have their own lives.
Can we slow it down?
Just for a few days?
She is our challenge.
Defiant and fiery – but so easily turns on the charm with her doe eyes and a smile that you find yourself fighting HARD to keep your smile. She’s cute as a button, and the little snot knows it too.
Her whole life she’s looked her challenges in the eye and laughed.
Torticollis? “Puh…watch me straighten my head out”
Hypotonia? “Pshaw…you say I won’t walk until later? Watch me and my crazy crooked gate at 12 months. (And just wait, I’ll run at 15 months).”
CF? “Ha! I got this…”
And she (mostly) has for six years now.
CF? “I told you…I got this…”
But she doesn’t.
Something is falling behind.
It could be a tough infection that’s skillfully hidden from the throat swab.
Or maybe her “poor” weight gain is exacerbating her CF.
Either way, she’s not maintaining weight. In fact, she lost this time.
Worse, her lung functions & saturation levels do not make her pulmonologist happy.
And now the challenger of rules and attitudes and restrictions is going to be challenged again.
Tests.
A Chest CT.
A bronchoscopy.
We’re going to get results quickly. By the end of the month we should know what we’re facing next.
Maybe IV antibiotics.
Maybe a g-tube.
Maybe both.
Doc says CF is more aggressive in girls.
So Doc is more aggressive toward it in girls.
Doc sat on this concern for almost a year.
Watching.
Waiting.
Believing it would improve – that K would knock it out of the park.
And she almost did – back in December we were sure trouble had passed.
But trouble came back.
Now is where life gets interesting.
Where we go on a strong offensive.
Time to once again laugh in the face of this challenge.
Whatever it ends up being.
First step.
Tests.
Answers.
Then we fight.
After the past few months with this one…
When the teacher calls…
First instinct is a cringe and suspicion.
But then they manage to blindside you again.
With good news instead of bad.
GREAT news instead of good.
PROUD news.
Her reading scores are off the charts.
So good that, thank to this new form of teaching the school is implementing (and we got into the sneak-peek-pilot-test of)…
Kennedy moves up a grade in her reading/language portion of class.
Every morning after the Pledge of Allegiance she will join a small group from her classroom and head into a 2nd grade classroom for an hour and a half.
Pushing her, challenging her.
To get even better in reading.
Because reading…is awesome.