by Sarah | Nov 18, 2015 | All About Denver, All About Kennedy, All of Us, Cystic Fibrosis, Redefining Perfect, Special Needs
Six months ago we were hit with a disheartening blow to our years-long CF journey.
The pulmonary doctor we’ve had from the very start of our journey was transferring all her patients on to new doctors. With plans to retire very soon, it was time to transfer her last six patients to their new forever homes. My two kids included. So, at our last appointment we met our new (highly recommended by Dr. A) doc, Dr. M.
Change isn’t easy. We were suddenly reporting on a Tuesday instead of a Wednesday. Dr. M, while perfectly nice, was making all of these suggestions and recommendations and this and that and I was honestly panicked.
Mostly because he wanted to do a complete, total, sweep of the CFTR gene on K.
In my blind, “this is so different, I don’t know, so I’ll smile and nod” moment I did just that. I smiled and nodded.
Yesterday we returned for the next appointment and this time, not so new, it was a little different. We spent some time with Dr. M, and the respiratory therapist and got a better feel for what’s going on.
And so we set new plans, a new direction.
My biggest concern with the genetic tests was addressed – would we lose the CF diagnosis, and therefor the vital insurance we desperately need for treatment?
No. Because of positive sweat tests and concurrent symptoms, their diagnosis of CF will remain no matter the results of the full genetic sweep (which is, blessedly, being covered by the fantastic CFF not just for Kennedy, but for Denver as well).
Then we moved onto Kennedy’s current status. Though her weight is at an excellent place right now for a change, her functions are not. She has maintained for years just fine, but Dr. M wants to do more than maintain. He wants to attack…and so…
With her functions the way they are, there is definitely some sort of obstruction, and he wants to find it. There will be a chest CT.
There will also be another functions test for before and after albuterol to see if there is any asthma-like influences, and she’s being put on a nasal steroid for her constant sniffles.
We’re fighting insurance for a new vest system (with the doctor’s help) since hers is old and been beat up by destructive toddlers. She will be on an increased vest rotation and possibly new meds (hypertonic saline) which will require new equipment.
Basically we are now fighting to push forward and move beyond basic maintaining and into full blown attack mode.
It’s terrifying and exciting.
I don’t know what’s happening in the future, except increased appointments and testing for the little one, but I do know that something is happening.
Change is scary, but this is proof it isn’t always bad.
And that first impressions aren’t everything.
by Sarah | Jan 22, 2014 | All About Kennedy, Cystic Fibrosis, Special Needs
One of those “perfect” dreams I had when I was pregnant, especially when I heard it was a girl, was doing their hair.
I couldn’t wait to braid and ponytail and twist and bun. I’m not kidding when I called it a dream – because I did actually dream of doing these things.
Several years ago I tried. As you can see in the picture, while I managed to make some complex hair styles, Kennedy had thin, thin, thin, hair with a few bald patches in the mix. In this picture, K is 4 years old.
Another problem she had is how insanely brittle her hair is. I have pictures of the back of her head where it looks like a hellish rats nest – freshly brushed. It is so brittle and harsh, it’s hard to believe.
Today my little beauty is nearly 8.
And her hair is, if possible, worse. After a brief period where her hair seemed to thicken, it’s once again thin, exceptionally brittle, and she has resumed the issues of bald patches. Currently, her hair is kind of really long – or at least part of it is. There’s been so much breakage, that it gets sort of thin at the end, and dead.
I’d love to attribute this to genetics, but neither Erik nor I ever had an issue like this. My hair gets brittle now because I’m such a ginormous fan of colorizing…but mostly mine’s very thick and healthy, and so is Erik’s.
So…we think it’s the CF.
We’re going to step up her vitamin regimen a little, and this weekend we’re taking her for a cute bob-style cut…but what else can we do?
I’d still love to be able to achieve the dream of doing her hair while she’s still young enough to want me to.
Or at least let her have the chance when she gets older.
Any tips, tricks, or natural remedies for thin/brittle hair?
(For reference, we have used the BioSilk product on her…yes, I know it’s not natural, but it’s AMAZING when we have time to do it…I use it on myself, too. Love that stuff, but it only helps with the dead ends and softening. I wouldn’t mind some equally amazing natural remedy!!)
by Sarah | Nov 5, 2013 | All of Us, Crap, Random, Special Needs
*Otherwise titled “The post in which I piss people off.”
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The hours at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live every day. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.
*~*
*This post is a re-post from a couple of years ago. It’s still very relevant to us today.
by Sarah | Oct 24, 2013 | All About Denver, Cystic Fibrosis, Special Needs
Three years ago we didn’t know.
Three years ago Denver had “asthma”. An occasional inhaler on the Cross Country field was needed.
A yearly, to bi-yearly round of antibiotics to treat pneumonia (which was my clue).
Then we got the diagnosis.
Last year was the first hospital stay.
1 full week.
The life-changing event still didn’t change much at home.
An occasional inhaler. A prescription for vitamin K. A small device for his percussion that he could carry with him it was so compact.
Fast forward another year.
Another hospital stay.
And Denver gets his first new car.
No, wait. It just costs as much.
The dreaded “vest”.
Or as Kennedy always calls it “The shakey-shake”.
We expected him to progress.
But not so fast.
Half the time I feel so blindsided.
I hate that he is so painfully aware of every change in his body.
I hate knowing that is sister will also progress one day, definitely before I’m ready, hopefully not before she’s ready.
Denver is smart, very intelligent, he researches and reads and wants to be a doctor after all of this. He gets it, and he lives it, and he tries to move beyond, although I think he had some trouble this year. His hospital stay came right at the start of Cross Country season and threw him off for the rest of the year.
Kennedy is showing signs of great intelligence.
Who knows, maybe one day one of them will be the doctor that finally cures this disease.
But for now they’re still my babies.
And they are tied to machines for at least thirty minutes out of every day.
And it hurts.
I don’t like that this is their ‘normal’.
I don’t like that Denver now has to add the “shakey-shake” into his schedule.
I never will.
by Sarah | Oct 3, 2013 | All About Denver, Cystic Fibrosis, Hospital, Special Needs, The Teenager
Teenagers are expected to rebel.
When they don’t you worry. I wasn’t huge on rebellion, but I found my own way to rebel – by ignoring my scholastic capabilities.
I never expected to be faced with a whole different sort of rebellion in my kids.
Medical rebellion.
It’s a dangerous game.
The “I feel fine, so I don’t need to maintain” game.
Now we have the new, added complexity of a compression vest.
Something the teen does not want to do.
Already he doesn’t do the things he doesn’t mind, and that only take a few minutes.
Maintaining seems like such a hassle when you’re fine.
Especially to a teenager.
Even a teenager that dreams of being a doctor.
Of all the things in my life that cause me stress and worry.
Medical rebellion resides at the top of the list.
Couldn’t he just give himself a mohawk and wear black and be all emo?
That I could handle.
I lived through that as a teen w/ best friends that weren’t…preppy…at all.
I could handle emo.
This medical rebellion crap?
It sucks.
Six months ago we were hit with a disheartening blow to our years-long CF journey.
