by Sarah | May 17, 2012 | All About Denver, Cystic Fibrosis, Special Needs
[flickr id=”7215498312″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It has been barely a year since the diagnosis. It has been almost a year and a half since we started the journey – all because of another round of pneumonia.
Since the diagnosis illness has kept its clammy hands away.
For the first time since the diagnosis, Denver is sick.
It started as what appeared like an allergy but quickly devolved. A mild fever, and an ugly cough. More coughing. Then more.
In a wonderful coincidence there was already an appointment scheduled. So yesterday he went. At the hospital all day running standard yearly tests. Waiting, still coughing, still sniffling, until he could see the doctor.
Within two minutes of her walking in the room she heard the cough. The look on her face said it all – it was ugly.
There is crackling in his lungs (the mucous) and it’s visible on the x-ray.
For now he is home on heavy doses of steroids and antibiotics. The instructions we are used to for the little one now apply to him. “Call if there’s any change” and “Come back in a month” have been said. Unlike her he can take full on pills (HUGE pills, blech), and most of his care is in his own hands. I mean, what teen wants their mom snuggling and coddling them?
There is nothing to panic about. He intends to go out and go through his “Ordeal” for the Order of the Arrow in Scouts despite his illness with his drugs in hand. Just like the diagnosis he’s not letting it slow him down (Did I mention he kicked butt in Track & Field this year? No? Well…he DID).
Still there’s that part of me that always panics. Deep down where I keep it hidden I wonder how/if this will affect the strength of his lungs. If it will change the depth of his illness (currently he’s ‘atypical’ and we like to keep it that way). His lung functions yesterday were horribly bad, so how will he get through his “Ordeal” this weekend…and forcing myself to not be ‘that mom’…especially given the name and motto of this blog (living life beyond our labels gets really damn hard sometimes).
Part of me wonders if he has that internal panic too. Wishes that if he did he would talk to me about it.
But he is a teen. He is stubborn. He keeps things close to the breast.
And he laughs in the face of CF (when laughing doesn’t throw him into a fit of coughing, that is…).
by Sarah | Mar 7, 2012 | All About Kennedy, Crap, Cystic Fibrosis, Special Needs, SSI, WTF?
[flickr id=”5293689107″ thumbnail=”small_320″ overlay=”true” size=”small” group=”” align=”left”]I have spent the past 3 months jumping through hoops. Doing everything the government asked. Going to appointments that seemed ridiculous. After all, she is covered by SSI for Cystic Fibrosis. It’s a set diagnosis. It’s not going to change.
I thought it was just normal. Three years had passed, they did a re-evaluation and we’d go on our merry way as we had been.
I never imagined we’d get a letter declaring the cessation of benefits.
That somehow, according to the government, Cystic Fibrosis is a condition that stands the chance of improving.
That somehow, 2 hospital visits, the addition of a very costly monthly med, a decrease in vitamin levels, a continuing need for nutritional supplements all equal an “improvement” in her condition.
I’ve already met with the lawyer.
Filed the appeal.
I get to go to court (woo-frickin’-hoo).
Continue to jump through their hoops. This time w/ a good lawyer on our baby’s side.
Stupid government.
by Sarah | Oct 6, 2011 | All About Kennedy, Cystic Fibrosis, Special Needs
[flickr id=”6217579492″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It was inevitable when we sent her out into the great big world of public interaction and the germ festival that is school. We knew that the possibility of increased occasions of illness were going to happen.
I guess we didn’t expect it to happen this fast.
Six weeks in and as of tomorrow we’ll be at 7 days absent. It’s about a 20% absence rate.
But this recent bout of illness this week has us baffled. There’s only a low-grade fever. No respiratory issues. A loss of appetite. Although who can blame her when the second she eats more than a small amount of food it all comes back up later?
And what comes up? Well, you don’t want a physical description. Let’s just say it’s cause for concern.
So tomorrow is the first sick visit of the year to the pulmonologist. We’re at an increased amount of “shaking” (percussion vest) per day because it seems there is an excess of mucous happening somewhere. Just not in her lungs. That we can tell.
Let’s hope it’s nothing serious. And that nothing serious comes as we get closer and closer to cold & flu season.
Were crossing our fingers for no hospital visit this year.
by Sarah | Sep 12, 2011 | All About Denver, Cystic Fibrosis
[flickr id=”5888954984″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It’s been a couple of weeks since the appointment I didn’t want to go to. Time to process. Time to settle into acceptance.
Oh yeah, and time to be swamped with school stuff.
Just last night I realized I never told you what was determined. What the “Final” conclusion is.
After the weird.
After the tests.
After more questions.
After nothing.
The pulmonologist said that once the test (that new ‘gold standard’ test) was sent to the official lab to be read by the person that is the know-all and be-all of it, he demanded more data. All of Brandon’s records were sent…and the conclusion THAT person came to was…
Brandon has CF. While his test ‘looked’ normal on the surface, a deeper examination plus looking at his medical records the conclusion is CF.
So our final official diagnosis for Brandon is “Atypical Cystic Fibrosis.”
We have our answer.
No more tests.
No more ‘but’.
Maybe one day it will change in the distant future. For now, though…for now we move forward with an answer. With the comfort of the likelihood being that he will not see some of the worst aspects of this disease. That there is a hope that he may never be seriously affected by it.
But there is an answer.
That is so much better than never ending questions.
Plus, the answer took so long in coming that by the time we finally settled into it, Brandon was not a wreck over it. He’d already adjusted to it being a likelihood. He’d done his research and made his peace.
And that is the best part of all.
by Sarah | Aug 26, 2011 | All About Denver, Cross Country, Cystic Fibrosis
[flickr id=”6083043811″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”left”] I knew he’d do me proud.
That was never in question.
But right out of the gate.
First meet of the season.
He blew me (and everyone that knew him) away.
He paced himself well.
Drafting behind another kid.
Then at the end hauled ass like you wouldn’t believe (see picture).
Pulling in 6th place overall.
4th on his team.
A final time (in the 1.9 mile race)…
Of 12 minutes, 12 seconds!!!!!
That is an entire minute than his best ever time.
His best placing ever.
The kid is a rocket.
And ready to roll the rest of the season.
He made me proud.
Okay, he made me cry – but I didn’t embarrass him by blubbering all over him.
Best.Race.Ever. Until next week 😀
*******
P.S. Can I tell you how hard it is to photograph when you’re screaming your heart out for your kid?
by Sarah | Aug 9, 2011 | All About Denver, All About Kennedy, All About Me, Crap, Cystic Fibrosis, Special Needs
[flickr id=”5770111250″ thumbnail=”medium” overlay=”true” size=”small” group=”” align=”left”]
Tomorrow we have an appointment for CF Clinic.
I don’t want to go.
I don’t want to hear what she has decided for my kids this time.
After the ‘new’ and ‘definitive’ test.
After the genetics counselor.
After so much hell.
I’m tired.
Of doctors.
Of tests.
Of changing diagnoses.
After the last appointment (w/ genetics) I declared I was done. I never wanted to take any of them to a doctor again.
But I will.
I will find that strength again.
I will listen again.
And make sense of their decision.
And put trust in her because she is their doctor.
But I will still be tired.
