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 | May 21, 2011 | All About Kennedy, All About Molly, Crap, Special Needs
We have no lingering baby toys.
They broke them all.
Toddler toys?
The same.
Toys that were mine as a child, passed on to Brandon, and then the girls…
Now in the local landfill…destroyed in little pieces.
Close playtime and giggling.
Always dissolving into tears and screaming.
Hand made curtains, lovingly sewn and hung.
Ripped off the wall, the rod broken.
The girls have always been more destructive.
Their room is a barren waste-land of decorating because they can’t be trusted w/ a dresser, much less finer details like lamps, pictures, or even hangers.
They are five and six now.
And as they sit here in extended time out for their latest run of torture, mayhem and destruction. We are left wondering.
When it is time to say “Enough is Enough”?
Is it sensory issues? Is it rotten kids? Bad parenting?
Did we go wrong somewhere?
by Sarah | May 11, 2011 | All About Me, Crap
The past couple of months in our house have been, for lack of a better word, muted. My blog has lacked life because I sort of have. For the second time in less than a year I’ve found myself struggling for air. I don’t like the recurring theme of the feeling.
I’ve mentioned in recent months my regular struggle with isolating, disappearing into my head. Then I’ve turned around and done that (once again to my husband’s disappointment).
I’ve mentioned in passing once or twice my husband’s struggle with depression, and the recent months have been bad for him too.
Maybe it’s the winter that’s refused to let go until suddenly turning into 80 degree weather. Maybe it’s the constant fluctuation of health news in our house. Maybe it’s realizing that our kids are growing up faster than we feel capable of.
I’ve been playing with perking up. Getting my cute shoes recently & wearing them when I go out to feel perky. I’ve taken a recent foray into playing with fingernail polish (my current color is a bright, cheerful orange). Today I dug out my camera in hopes that maybe using it it again will help too. Today I’m writing a blog post for the first time in weeks. Little steps. Once again trying to unbury from the pile of crap that is my current funk.
Then this morning I was catching up on one of my favorite TV series, House. As I watched, distracted by other things, half paying attention…one statement pulled my attention back. Thirteen (yay, she’s back!) was talking about happiness…and her comment was:
“Our level of happiness is set. It’s in our DNA.”
It’s an incredibly cynical view.
But is it right?
Are we pre-destined to be happy or miserable by our DNA?
I’ve often wondered, throughout my whole life, how I can feel so different. So very…”un”. That people seem to sense it before we’ve finished being introduced (or is that paranoia?). And yet my brother, very clearly of the same genetic pool as I am…can be one of those magical people that draws everyone to them. That is the center of attention. That is popular. Happy. Confident.
Nature vs. nurture.
Can we literally blame our parents for creating a genetic cess pool that became us? Or does life mold us into something that becomes set in stone at a certain age?
Am I destined to live with my available level of happiness no matter what I do to fix it? Is my husband destined into a world where not even the most modern of medicines can help him cope w/ sometimes disabling levels of depression?
Are we truly limited in our happy?
by Sarah | Apr 21, 2011 | All About Kennedy, All About Molly
Six years and 2 days ago I was lying in a hospital bed staring at the TV waiting for the smoke at the Vatican to change…oh, and for the stupid Pitocin to make a lick of difference in my labor. I was 38 weeks, but as Riley had stopped growing at 34 weeks, the doctor thought we should get the IUGR baby out and kicking. At 5PM it really started to hurt. By 7:30PM my little princess Riley pushed herself out without making me work a bit for it.
Five years ago at this very minute I was walking with Riley and Brandon to Dairy Queen. At 36 weeks pregnant I was trying to kick start labor. Ordinarily I wouldn’t at that early, but Angel had tried to come almost a week before and the doctor had made her stop…and once I was 36 weeks I was given the all-clear. My body was tired. Bed rest was getting really old…so we took a walk. 2 miles there, 2 miles back. By 4PM labor finally kicked in, at 11:33PM Angel joined us.
I didn’t know the crazy, curvy hectic road ahead of us.
I thought I’d never sleep through the night again.
I wanted to hold my tiny little baby girls forever.
I blinked, though.
In that blink they turned into little girls.
Smart, beautiful, happy, crazy, obnoxious, witty, loving little girls that fill our lives with laughter and chaos and so much love.
In the fall Angel starts Kindergarten and Riley will move onto first grade.
I’m afraid to blink again.
I want to sit and stare until my eyes go dry. Capture every moment and lock it up tight.
Happy birthday to both of my little girls.
Stop growing up now.
Please?
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.
When a pulmonologist with over 20 years of experience declares your family’s case is “Weird”…you know you’ve got issues.
