by Sarah | Apr 24, 2013 | A to Z Challenge, All About Me, Random, Special Needs
Fear stalks me.
Like a lion stalks its prey.
It inches forward.
Leaps.
Fear that they will get sick.
Fear that I won’t be strong enough.
Finances.
Insurance.
Illness.
Depression.
I’m the silver lining girl.
But sometimes the lion of fear pounces.
On the days I’m smiling my brightest.
Is when most often, it’s devouring me most.
When I wonder how I will go on.
But I do.
The silver lining reappears.
The lion falls back.
And begins to stalk me again.
*~*~*
The A-Z Challenge has over 1900 participants, all blogging from A to Z this month. Check them out and see if you can’t find a few new favorites!!
by Sarah | Mar 25, 2013 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
Cystic Fibrosis.
The word hit me like a ton of bricks the first time Dr. A used it to refer to Kennedy.
My only experience and knowledge of the word harkened back to the TV show “Touched by an Angel.” The special 100th espisode “Psalm 151” that had guest stars Wynonna Judd (as the mom) and Celine Dion (as herself).
An 11 year old boy with Cystic Fibrosis that knows he doesn’t have much time left. He has a ‘list’ of items to complete…the final one being “Go to heaven.”
In the episode we saw a young child with the disease. We saw examples of chest percussions being performed (done by hand, not vest).
We saw an 11 year old die.
With that as your only experience, and a doctor telling you, “Don’ research on the internet, the stories will terrify you, let me talk to you first”…you sort of get a little freaked out.
Okay, you get a lot freaked out.
Dr. A’s reassurances that the diagnosis doesn’t mean what it did as many as 10 years ago did little to help my nerves.
Only living it has eased my sense of panic.
Seeing my kids live normal lives.
Is the worry still there?
Do I have a little heart attack at every high fever? At every cough?
Yup.
But with two kids living with it, and living well…suddenly having a bucket list at 11 doesn’t seem like quite as much of a possibility.
You just may have to remind me of that next time we’re in the hospital.
Deal?
by Sarah | Mar 22, 2013 | All About Molly, All of Us, Failure to Thrive (FTT), Special Needs
[flickr id=”8579444004″ thumbnail=”medium” overlay=”true” size=”medium” group=”” align=”left”]Last week Kennedy got it. That nasty bug that spiked her fever and gave her some time over a bucket, and then in the bathroom. It lasted about 4 days, during which she was mostly “okay”…able to eat crackers and keep down Gatorade.
She went back to school on Tuesday, and no one else showed signs of sickness. I thought for certain we’d avoided the curse of the “traveling” virus that would go from family to family.
Then, first thing yesterday. 6:30AM in the morning.
It struck Molly.
Hard.
So much harder than it hit Kennedy.
For over 12 hours she couldn’t keep anything down.
Nothing.
Not even sips of fluid.
By about 7PM I was really worried. I checked her weight.
Molly is about 50″ tall and is about 48lbs – already severely skinny from her FTT.
At 7PM last night she weighed a measly 42.5 lbs.
Dark sunken eyes, bad color…she almost looked like a skeleton. She could walk to the bathroom, but barely. She asked for help getting back in bed.
Not sure of the next step I called a local 24hr nurse service and they confirmed my worries and we headed to the ER.
After an hours weight in a packed ER we finally got a room (the room reserved for psych cases that had no amenities like TV or phone, and whose chairs were weighted down and almost impossible to move.).
A lovely doctor stopped in the room before we even had her on the bed. Talked with us for a few seconds and ordered an IV drip and Zofran. The IV tech was in the room about 1 minute later. It took a little work to find a vein, but find one they did.
Molly? Took her first IV like a champ. There was a little whimpering, of course, but over all she was amazing.
A couple hours later, our Molly was back. Sparkling personality and all.
Amazing what anti-nausea meds and a liter of fluids can do for a girl.
by Sarah | Mar 1, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
After a week of panic, we finally got word back.
For now, oral antibiotics are the treatment.
For now.
The infection they found is one they usually leave untreated.
But because of her low functions and low weight, they are treating it anyway.
For now we can breathe.
Until April when we have our next appointment.
I am still waiting for the shoe to drop.
But I can breathe knowing that if it does, it won’t be until April.
by Sarah | Feb 28, 2013 | All About Erik, All About Kennedy, All About Me, All of Us, Cystic Fibrosis, Failure to Thrive (FTT), Hospital, Special Needs
Monday morning Kennedy had her tests scheduled.
By luck (or misfortune? or happy accident?) they decided only to perform the bronchoscopy. Of course, that meant she still had to undergo anesthesia and have a tube stuck down her nose – but it was one test, not two.
Overall the test went well. They were able to get a good sample to test.
For the bronchoscopy purposes and getting the sample, it was required that they inject fluid into the lungs…of a CF patient. This, of course, “could cause a low-grade fever.”
Low-grade my ass. She spiked up to 103.6*.
In the end, it came down with Tylenol, snuggle time, and a good round of her [amazon_link id=”B005LAIHW2″ target=”_blank” container=”” container_class=”” ]favorite[/amazon_link] [amazon_link id=”B007MDB6L0″ target=”_blank” container=”” container_class=”” ]movies[/amazon_link].
Now she’s back to normal, at school, playing/fighting with her sister…and none the wiser.
Meanwhile Erik & I wait.
And wait.
And wait some more.
The test results could mean a hospital stay, a PICC line, a g-tube – any or all of the above.
Kennedy is blissfully unaware of the repercussions.
But Erik & I wait.
Waiting sucks.
by Sarah | Feb 25, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
Today my youngest one is (as this posts) undergoing tests that will determine further treatment. In honor of that and the indomitable spirit I know she has, I’m re-posting this post from a couple of years ago.
[flickr id=”5883282550″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”] Neither love nor fire can subsist without perpetual motion; both cease to live so soon as they cease to hope, or to fear. ~François de la Rochefoucauld
She is never still.
My Angel.
Always in motion, even at rest.
Curious about everything.
Has to touch it, feel it, question it, learn it.
The world is but a canvas to our imaginations. ~Henry David Thoreau
She sees the world with bright eyes.
Hears music no one else hears.
Sings songs of her own workings.
Finds fun and life in nothing more than a rock.
A tomboy, and a princess, all wrapped into one.
Child of the pure, unclouded brow And dreaming eyes of wonder! Though time be fleet and I and thou Are half a life asunder, Thy loving smile will surely hail The love-gift of a fairy tale. ~Lewis Carroll
She loves with all her heart.
And can melt yours with a smile.
Or one look of her big brown eyes.
A Daddy’s Girl.
My precious Angel.
A sample of the purest love. Unconditional love.
Our Angel.
Fear stalks me.
