by Sarah | Feb 14, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), PICC, Special Needs
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.
by Sarah | Nov 23, 2012 | All About Denver, Cystic Fibrosis, Hospital, PICC, Special Needs
When Kennedy was diagnosed with CF we were assured that we were likely to see more trouble from her myriad of other issues than we would for CF. With the exception of one hospital stay two years ago, that’s been mostly true.
When Denver got his diagnosis at the age of 13, we knew his situation would be different. Already he had chronic lung issues (pneumonia, bronchitis, etc).
Still, given the unique nature of both his and K’s CF…and the fact that I have a document stating that genetics can not confirm the diagnosis in either child – therefore making them “atypical” CF cases…
We still never realized how fast it would happen.
We didn’t realize how soon he’d end up in the hospital.
How quickly one hospital stay could change his day to day existence.
Or the perceptions of those around him.
How he would go from being “Oh, I don’t see how they could diagnose him with that” to becoming, “Is it safe for him do this? What about his illness? We need his doctors information to let him do…”
In heartbeat.
In a cough.
In a moment’s time he went from one life to another.
Change happens fast for everyone.
This lightning speed attack of time & reality threw us all for a loop.
We’re all still adjusting.
It takes time.
Let’s just hope time gives us a little breather to catch up before we get blind-sided with another dose of reality.
by Sarah | Nov 7, 2012 | All About Denver, All About Erik, All About Family, All About Kennedy, All About Me, All About Molly, Cystic Fibrosis, Special Needs
When one kid is in the hospital you disappear into a bubble.
The world outside of that room fades away and you are nothing but medicines and doctors and nurses and monitors.
The last time we were in the hospital we didn’t know Denver had CF. We were there for just three days and everyone was always visiting Kennedy.
This time it was Denver in the hospital and Kennedy couldn’t visit (they don’t even like CF kids living together but…well, siblings and all that). We couldn’t all be up there, and we had to switch things around and find someone to watch the girls and – chaos reined until my in-laws were good enough to take them over the weekend.
We were able to focus on the one child. The sick one. The tests and orders and plans for what would happen with him.
In the bubble things are protected – but you don’t feel whole.
Coming home is chaos. Suddenly girls are screaming and running and Denver is teasing them and it’s loud and crazy and gives me such a headache.
The bubble bursts into wild days of life bursting at the seams and homework and chores and stories of all kinds.
The bubble is safe, protected, sheltered.
Life on the outside might be dangerous, but suddenly you have peace you didn’t before.
You are home.
You are whole.
by Sarah | Nov 2, 2012 | All About Denver, Cystic Fibrosis, Special Needs
Just a couple of days ago I lamented the wait to get into a doctor. I think I knew then. I just knew. That’s why I panicked.
I ignored the instinct and let myself be soothed.
And he ended up here.
He probably would have anyway, but the timing might have been better – but that is a different post for another day when I can step away from my anger.
Before the doctor entered the room, she was already sending the nurse to find him a room, writing orders for strong antibiotics, a PICC line and extensive breathing treatments.
He’s in until Monday.
But he was just diagnosed a year ago.
Already he’s in for a CF related illness.
He didn’t start getting sick until about 5 years ago.
It was once a year.
This year – it’s twice.
Knowing this disease is progressive never scared me as much before. Not until it took less than 2 years for Denver to end up here.
Not until it took 2 days to get bad enough to require this.
Not until knowing that despite the amazing functions he usually has, the life full of Cross Country & playing, he could degrade so far so very fast.
It’s frightening.
Not just for us.
For him – now that he’s living it.
by Sarah | Oct 30, 2012 | All About Denver, Cystic Fibrosis, Special Needs
When I had Denver – I was so spoiled by fate.
As a single mother, living with my parents it could have been more difficult – but Denver was always an easy kid.
Those milestone ages and events? He met the deadlines perfectly.
The ages used for sizes on clothes? Met those perfectly too. Moved into 6-9 month clothes at 6 months. Until he grew into size 7’s, that was the norm.
Everything for him was met at the perfect age. He was well behaved and polite – and still is to everyone but his ‘stupid parents’ (he is a teenager, after all. We are the enemy now). He’s a good kid.
I never really had to worry.
The only time I worried & panicked – Mom instinct had kicked in. He went on a camping trip for Scouts and I knew before he left something was going to happen – and it did. That’s when he broke his wrist. Call it a premonition, call it instinct, but I did panic (once the phone call came) until he made it safely home.
That was all before the light bulb went off and his chronic pneumonia finally hit me hard enough to test him for CF.
Now he has the diagnosis but the unusual nature of his diagnosis (and his sister’s) they are both listed as “atypical” CF.
The thing that worries me, is that I’m sitting here listening to wheezing, he’s struggling to breathe, but despite a nurses first instincts, we aren’t going to the ER. The doctor dismissed that idea. We’re being made to wait to go in until tomorrow. If his condition worsens we’re to go to the ER, otherwise we sit here for over 24 hours past when he woke up because he struggled to breathe.
I’m hoping that it’s because he has no fever. That it’s a logical explanation.
But I can’t help feeling like maybe the atypical nature leaves them to react less.
I’m sure I’m just being over-protective and paranoid because I’m so very worried.
Right?
by Sarah | Sep 27, 2012 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
[flickr id=”8012257268″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]Since birth the girls have been tiny. Hell, all my kids rock the bottom of the growth chart. Always. It’s in their genes. Up until 3 kids & a hysterectomy totally made my body go haywire I had insane metabolism. I remember hours spent in my pediatrician/allergists office playing with the toys he had on display while he discussed my growth chart (and how I was well below 0%tile) with my mom.
It’s a familiar theme.
One that in standard circumstances is a concern, but not panic inducing.
We eat.’
Tons of food.
We just don’t gain.
Metabolism rocks until it actually works against us. And trust me, as a teenager being asked if you’re anorexic when you eat like a horse is NOT fun. It really sucks.
But this goes beyond personal suckage.
When you combine Cystic Fibrosis with the words Failure to Thrive.
You get a heap of shit-panic-stuff-the-kids-faces-until-they-can’t-eat-any-more to deal with.
Back in June both my CF kids rocked the weight chart. For the first time ever the nutritionist said “we dont’ have anything to worry about here, keep doing what you’re doing. They look great.”
For the first time in her entire life Kennedy looked AMAZING. In the 10th%ile for BMI 10th! Dude, in this family that is some serious awesomeness. Worth celebrating.
Now, just 3 months later we’ve stalled. Flatlined. Kennedy gained almost nothing in the past 3 months. Her BMI is back at the bottom, in below the 5th%ile. Amazing how fast the growth chart swoops up to wipe away previous progress.
Again, in an average situation we’d not panic. But now we have 2 months to get meat on her bones.
2 months. Make sure at school she’s allowed extra snacks, extra time at lunch to finish. whatever it takes.
If we don’t put meat on her bones, they put a g-tube in her belly.
In a society where everything is marketed to keep obesity at bay.
I have to find ways to put weight ON my kids. Lots of it.
So that we can avoid the g-tube. The g-tube is not welcome here.
She is our challenge.
