by Sarah | Jun 13, 2013 | All About Denver, All About Family, All About Kennedy, Cystic Fibrosis, Special Needs
It starts early.
Actually, the night before in a way.
As the teen is put on a fast, and we all go to bed early.
Because we have to leave at 7AM to get to the hospital at 8AM.
So the teen can drink that sickeningly sweet glucose concoction.You know the one, the same one we drank when pregnant.
And then we wait.
For two hours.
For more blood to be drawn.
Then the girl gets her blood drawn – which holy hell it’s like she’s being murdered.
Then it’s onto x-rays.
And functions.
And then we meet…
THE TEAM.
The social worker who hasn’t got much to say, but comes in every year. Makes sure we aren’t being killed by medicine costs. That we have all the ‘help’ we need.
The nutritionist that always tells us the kids are too skinny and to fatten them up. She gives us orders for calorie/fat boosting nutritional supplements.
The nurse that takes cultures and histories and makes sure all is clear.
The research associate that clues us in to new research projects we can partake in if we chose.
We break for lunch, and return and wait.
As our hospital is a teaching hospital we then see the Fellow. Who talks to us, examines both kids and heads out.
Then the doctor. Who examines both kids, goes over x-rays and future plans.
This year we had a change from the patter as the teen is being prepared for his own care. His exam was held in his own room where she went over the (still surprising to me) aspects of CF and how it could affect him and his future. The things no teenager wants to talk about in front of their parent…I mean EW.
It’s a full day.
Long.
Exhausting.
It ends with us grumpy.
Ready to get the heck out of there.
And grateful for another year.
It’s called a “birthday visit”.
A celebration of an anniversary i’d rather forget.
Kennedy’s is June 11th.
Denver’s is April 29th.
We meet them in the middle.
But in both cases, I’d rather forget that day.
The day we “knew” for sure.
Not celebrate it with a painful, long, exhausting day.
Although if we have to ‘celebrate’ such a ‘birthday’.
What better way than in misery?
by Sarah | Apr 27, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), GERD, Hypotonia, Special Needs, Tibial Torsion
So X-ray might not be original, but I don’t care.
Some days I wonder how it is that Kennedy doesn’t glow.
I know the exposure levels are ‘minimal’.
I remember the lectures.
I remember the exposure tags when I worked at the vet’s office years ago.
But Kennedy has had so many x-rays in her short 7 year life.
They started around the time she was a year old.
Some X-rays were because of her lungs, and her eventual diagnosis of CF.
Others were for her hypotonia and the possibility of one leg being shorter than the other.
Or her tibial torsion.
And let’s not forget the reflux…oh, and the dysphagia where she had painful swallowing (which we eventually learned was from her inability to chew properly)…which meant about 5 times drinking and eating barium-laced substances and eating in front of a fluoroscope.
She has spent more time in front of X-rays, CT-scans, fluoroscope’s in her 7 years than I have in my entire life.
I’m seriously surprised she doesn’t glow.
*~*~*
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by Sarah | Mar 25, 2013 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
Cystic Fibrosis.
The word hit me like a ton of bricks the first time Dr. A used it to refer to Kennedy.
My only experience and knowledge of the word harkened back to the TV show “Touched by an Angel.” The special 100th espisode “Psalm 151” that had guest stars Wynonna Judd (as the mom) and Celine Dion (as herself).
An 11 year old boy with Cystic Fibrosis that knows he doesn’t have much time left. He has a ‘list’ of items to complete…the final one being “Go to heaven.”
In the episode we saw a young child with the disease. We saw examples of chest percussions being performed (done by hand, not vest).
We saw an 11 year old die.
With that as your only experience, and a doctor telling you, “Don’ research on the internet, the stories will terrify you, let me talk to you first”…you sort of get a little freaked out.
Okay, you get a lot freaked out.
Dr. A’s reassurances that the diagnosis doesn’t mean what it did as many as 10 years ago did little to help my nerves.
Only living it has eased my sense of panic.
Seeing my kids live normal lives.
Is the worry still there?
Do I have a little heart attack at every high fever? At every cough?
Yup.
But with two kids living with it, and living well…suddenly having a bucket list at 11 doesn’t seem like quite as much of a possibility.
You just may have to remind me of that next time we’re in the hospital.
Deal?
by Sarah | Mar 1, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
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.
by Sarah | Feb 28, 2013 | All About Erik, All About Kennedy, All About Me, All of Us, Cystic Fibrosis, Failure to Thrive (FTT), Hospital, Special Needs
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.
by Sarah | Feb 25, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
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.
It starts early.
