by Sarah | Jun 28, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
Today we met with the genetics counselor.
We left with nothing.
Nothing new.
The suggestion that a grad student may want to write a paper on our freakish family to be published in a medical journal.
We’re weird.
The science cannot explain the CF abnormalities in our family.
The only thing ‘new’ we learned was the specific genetic defects on Angel & Brandon’s CFTR gene. We have names for their CF.
But no more answers.
And so we soldier on.
With CF diagnoses that have no solid genetic confirmations.
With treatments for a disease that is “Atypical”.
We wait and see if one day our freak family will be put on parade in the hope of ‘helping’ the scientific community.
We wait and see how mild or active the weirdness of CF becomes for our kids.
We wait for nothing to change.
We wait for everything to change.
We wait.
by Sarah | Jun 11, 2011 | All About Denver, Cystic Fibrosis
Five years of toeing the edge has changed me.
Of looking into that abyss, only to be yanked back..and then shoved right to the brink again has worn down my soul.
You know it’s bad when you look a doctor dead in the eye and say:
“I’m going to have a nervous breakdown…”
And then you DO.
For four years we rode the see saw of “Is it CF? Is it not?” with Angel.
Then came the hospital stay. The genetic test.
All answers pointed to yes.
Then along comes Brandon. All answers leaned in the general direction of no, but then bounced right into the yes area with 2 ‘final’ tests.
The yo-yo was killing us. After four years of ‘kinda’ with Angel we were sure that Brandon would provide us with the clear cut answers.
We were wrong.
Six more months of a yo yo and then…
Diagnosis.
Confirmed CF.
But.
Oh, the but’s.
But.
“But we can pull the diagnosis as diagnostic tools for CF develop.”
But.
“But there’s one more test.”
But.
I’m tired of tests.
Of questions.
But.
“It’s the new ‘gold standard’ test.”
But.
“It’s in testing stages.”
He should do it.
So he did.
Against my judgment.
And the yo-yo springs up again.
The test was negative for CF.
“But it’s just a small piece of the puzzle.”
They say.
“But his diagnosis may remain.”
They say.
“But this test. It shows him normal.”
And I break down.
I am tired.
The string of the yo-yo has broken.
I see the depths of another depressed funk right at the edge of my vision.
All I’ve ever wanted was answers.
One.
Clear cut.
No more questions.
One.
Without a ‘but’.
One.
Without more tests.
One.
Without answers how can we accept our truths?
Without answers how can we adjust?
How can we Redefine Perfect?
I feel like I’m falling off the edge into that abyss.
I don’t like it.
Part of me wants to never ever see another doctor.
Run another test.
I want solid ground.
So that I can find my footing.
Move on and live for a change.
I don’t handle questions well.
Answers are how I survive.
Give me answers.
Solid ground.
by Sarah | Jun 9, 2011 | Crap, Cystic Fibrosis, Random
We have a busy day today, and the lazy days of summer that have finally arrived have my brain saying “Uh….huh?” instead of coming up with deep blog posts. So those combined factors give me a blog post of random bullet points…
* So You Think You Can Dance has started! While my husband cringes and cowers, I drink up every minute of this show…LOVE summer when it comes around!!
* Within two weeks time we went from insanely & unseasonably cold/rainy days to insanely HOT killer heat waves. To the point of not being able to go outside some days. What ever happened to spring?
* Today Brandon has some weird test for CF that apparently has become the new “Gold standard” test for the disease and could yet again change his diagnosis. Can I say that that alone has me thinking I don’t want it done…I can’t tolerate any more flip flop on this…if they change his diagnosis AGAIN after all of this I’m just going to break down and cry.
* In exactly 5 weeks I will be having the best birthday ever. My best bud, Jess, will be coming into town with her boys. They’ll be staying for about 5 days right around my birthday. I’ll be going to get my tattoo (YAY)…and it will just be an amazingly fun weekend 😀
* I’ve been cleaning. Randomly. Thoroughly. It’s strange. I hate to jinx it. It makes my husband very happy.
* In 10 weeks my kids will ALL be in school. Angel will only be in school for a couple of hours a day…but…my kids will ALL be in school. There is something not right about that thought.
* On a related note – the third/final trimester sort of sucked for both of my school kids this year. Grades dropped, behavior dropped. Not sure what happened there but leaves me feeling BLEH.
* I don’t know if you somehow missed the hullabaloo over the Circle of Moms Top 25 Faith Blogs that was turned into a spiritual warfare (including death threats to one of the nominated blog owners) – but I’m proud and pleased to say that a Pagan blog has won…and one of my favorite Pagan bloggers at that. Congrats, Mrs B!! You behaved admirably and held your head high through the chaos and ugliness thrown around.
And that’s it for today. I need to get back to my day…lots to do before we have to leave for the hospital for the newest test.
by Sarah | May 26, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
When a pulmonologist with over 20 years of experience declares your family’s case is “Weird”…you know you’ve got issues.
Yesterday Angel had her (4th) CF birthday visit. Brandon had his first CF visit ever.
There was the standard blood work, sputum cultures and x-rays done and then after lunch we got to meet with our pulmonologist. During the entire day the oddness of our family’s case was expounded upon.
* Both have defects on the CFTR gene. They both have slightly different defects. Angel’s leans more in the ‘standard’ CF direction…Brandon’s does not.
* The defect for both kids is one that has not been seen before.
* It is generally thought that their case of CF is “mild” as per the standard.
* Both of them had positive sweats, but in a low-positive area.
* In the strangest note of the day the pulm said that you could lay Angel’s x-ray on top of Brandon’s and the affected area in both of them would match up perfectly. They have almost identical lung damage in the almost exact same place.
We are moving forward with them. Their treatment plans are set. Brandon will have another test (a new CF diagnostic test).
We will meet with the genetic counselor still – the appointment is a month out. It was suggested that because of the oddness of our case we may all end up having our genetic tests run.
Until then we continue on. As we have been.
One foot in front of the other. One day at a time.
by Sarah | May 22, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis, Photography, Weekly Winners
All taken w/ Canon Rebel XS.
Today we walked in the Great Strides walk to raise money for the Cystic Fibrosis Foundation…All of my pictures today are from and in honor of the walk. We’re still accepting donations, so if you have even a spare dollar to help us find a cure, click my button over there. Even though CFF is getting closer to a cure every year, even today we had a moment of silence in honor of a 17 year old that had lost her battle with the disease just last week.
Purple for the Cure
Ready to Walk
Dropped
Twisting to Throw
Bracelets of Hope
Blow it Away
Walking for a Cure
Sunglasses Please
Sprinting Ahead
In my small little team, the two that were my CF babies decided to race on ahead of the rest of us…and literally ran right out of sight.
You can find more pictures over at my flickr account.
That’s all for this week. Head on over to Lotus‘ digs to see more!!
by Sarah | Mar 31, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis
The stopwatch was never ending.
Just a few weeks ago I lamented the never ending ticking of time.
Over four years of non-answers for two children, going on months for the latest.
I just wanted answers. One answer.
Today the stopwatch started beeping, signalling time up.
It sounded strangely like a ringing phone.
**
Yesterday we took Brandon for his “repeat sweat” test. It was to rule out error in the initial (low) abnormal score. Accounting for the test having an error and his numbers actually being in the normal range.
It was a formality.
Except, it stopped being a formality when the doctor’s office called us to give the results…instead of waiting for our call.
This time the numbers were different – but they were in the positive range.
Add in the ugly appearance of his lungs on the x-ray for December.
And the appearance of staph on his sputum culture.
And the odd result of his genetic test.
They’re calling it.
Brandon…
He has Cystic Fibrosis.
Which gives Angel’s odd course to diagnosis even more credence.
I asked for answers.
Now we have to figure out how to give answers to my 13 year old son.
Angel is growing up with it from the age of 1…to her it will be ‘normal’.
Brandon is a fully functioning, exceptionally brilliant young man…with a bad case of the worries.
His life today will not change…he’ll have more meds, and will get a chest compression vest/machine of his own.
But getting him to understand that.
To understand its not a death sentence.
That his life will be full…and probably very long.
Somehow we’ll make him understand.
Once we get our heads around it.
Today we met with the genetics counselor.
