by Sarah | Jun 21, 2013 | All About Denver, All About Erik, All About Kennedy, All About Molly, All of Us, Autism, Cystic Fibrosis, Failure to Thrive (FTT), Special Needs
In the land of skinny genes, cystic fibrosis and oral aversions – we’ve got three kids rocking the low end of the growth chart. The words “Failure to Thrive” are bandied about on a regular basis and we are constantly checking little one’s diets to make sure they aren’t just getting calories, but healthy fats and plenty of vitamins and minerals too.
The universal consensus for adding all of these things to help my kids grow & gain weight like they should?
Doctors across the board have pushed us to full-fat Vitamin D milk. It’s all we’ve got in the fridge, and we go through 3-4 gallons a week between the kids and hubby.
Before this FTT world hit my life I knew so very little about milk because I wasn’t allowed to touch the stuff (still can’t) due to an allergy (allergy, not intolerance). These days I’m learning a lot about milk beyond my family’s obsession (seriously, the husband can’t stop drinking it)…because I like to know about what goes into my family’s bodies – especially if it’s meant to promote their health.
One thing that I love learning is how drinking milk is likely to help my own state and community. After all, Indiana is home to over 1200 dairy farms – 97% of which are family owned (and I’ve met some of those families). I was also surprised (and happy) to learn that most milk travels less than 100 miles from the farm to the grocery store.
Of course, the biggest thing I made sure to learn about and know really well is that both plain and flavored milk contain nine essential nutrients, including calcium, potassium, phosphorous, protein, riboflavin, niacin and vitamins A, D and B12. Considering my kids needs, this is of utmost importance. It means that they’re getting vitamins and nutrients that either they refuse to eat, or that their bodies are leeching from them.
And the only factor that matters to me, personally? Indiana – well, it ranks second in the nation for ice cream production. Because, I can only tolerate 1 serving of dairy a day…and you better believe it’s in the form of ice cream.
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*Disclaimer: This post was sponsored by Indiana Dairy. This means I was paid for it, however all opinions are mine and true based on my own experience. You can’t pay me to lie about my family’s health…it’s too important to us all.
by Sarah | Apr 27, 2013 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), GERD, Hypotonia, Special Needs, Tibial Torsion
So X-ray might not be original, but I don’t care.
Some days I wonder how it is that Kennedy doesn’t glow.
I know the exposure levels are ‘minimal’.
I remember the lectures.
I remember the exposure tags when I worked at the vet’s office years ago.
But Kennedy has had so many x-rays in her short 7 year life.
They started around the time she was a year old.
Some X-rays were because of her lungs, and her eventual diagnosis of CF.
Others were for her hypotonia and the possibility of one leg being shorter than the other.
Or her tibial torsion.
And let’s not forget the reflux…oh, and the dysphagia where she had painful swallowing (which we eventually learned was from her inability to chew properly)…which meant about 5 times drinking and eating barium-laced substances and eating in front of a fluoroscope.
She has spent more time in front of X-rays, CT-scans, fluoroscope’s in her 7 years than I have in my entire life.
I’m seriously surprised she doesn’t glow.
*~*~*
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 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.
