Here we go again...

blah blä/ an informal interjection

1.  used to substitute for actual words in contexts

where they are felt to be too tedious

or lengthy to give in full.

Just a week ago we were anxious to be out together. 
 

Ready for shopping trips, planning vacation, sunning at the park, spending lazy days floating in the pool, preparing the garden, and counting down the days until the end of the school year.  Unfortunately, this year Spring blew in fluctuating temperatures, high pollen count, and a respiratory illness for Rylee. 

One all too brief jaunt out to church and lunch at a local restaurant with friends - and the long awaited and much watched for yearly winter illness caught up with her. 

Our attention is now diverted to tracking a small pharmacy of medication regimens, tube feedings, suctioning and nebulizer treatments, positioning, percussion chest massage, and the realization that everything within a ten foot radius of Rylee smells of Vicks Vapor Rub. 
 

Pool floats, hammocks, and beach umbrellas have been temporarily supplanted by a thermometer, O2 monitor, and stethoscope.

The feeling of a gentle breeze ruffling her hair and the sound of our neighbor's wind chimes have been replaced by her favorite music and DVD which we hope drowns out the sound of the machine beeps and whirls.
 

Her occasional productive coughs and rapid breathing causes us all to live with our hearts in our throats and vicariously clear our own.  Normally on her blog we only discuss the positives...and we still maintain our sunny dispositions but will admit to a few dark clouds obscuring our horizon. 

Aaron and I continue to be thankful.  Thankful for the training of wonderful physicians and nurses who've taught us to do all this at home, hopefully dodging a hospital admission one more time.  Thankful for the help of a night nurse and my mom who attends to Rylee as diligently as I would, allowing me to rest my heart and mind for a few moments.  Thankful for a big sister who encourages and snuggles with her sister, undaunted by the unusual sounds and odors that accompany illness.  Thankful Aaron and I have great jobs-his allows me to be home, mine allowing me to miss work with no repercussions to care for Rylee.  Thankful for humor in the midst of everything.  Thankful for an accessible house that allows me to care for Rylee and keep her comfortable.
Thankful that while Rylee has a devastating disorder with no cure...she is still overall remarkably healthy and stable for the majority of the year.

So-temporarily-allow us to have the "blahs." 

I don't post for pity...if we need that we have a pity party easily assembled, "check please." 

Instead, I post to ask for an interest in your prayers and thoughts. 
We are on day four of treatment and are slowly seeing small improvement. 
Please pray our sweet Rylee feels better as we go through the weekend. 
Our faith gives us hope and grace but it is heart searing, mind numbingly difficult to watch and wait.