And Breathe….

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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.   Read more »

Waiting Sucks

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.   Read more »

by Sarah Cass

Multi-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.

The Spirit of One

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. Read more »