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17Feb

My mom will be posting once a week throughout February, so enjoy this post written by Karen Brocker as she writes what it is like to be the mother of a daughter with a not so normal life.
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I’m really enjoying the continuation of the kangaroo theme. So enjoy my shoddy photoshop skills!

Getting ready for a vacation usually includes some anticipation , planning and a packing list.  Most of us, though, figure that we can purchase forgotten items when we reach our destination. No big deal–right?

We have learned, sometimes the hard way, that  forgetting something when travelling with an active disease, can pose more of a challenge.  
There was the time Sarah took a weekend trip to visit her boyfriend’s parents.  At that time in her life she was sporting an anti-fashion accessory called an ileostomy.  Her’s was a very special ileostomy in that her body produced such a huge volume of liquid that the bag had to be emptied every 2 hours (night and day) and always posed a danger of popping off her little body.  Needless to say, travelling with an extra bag and dressing change was imperative.  

You can imagine the panic, then, when she discovered she had not packed said items.  In case  you have ever wondered… there are about 1 million (okay an exaggeration) different sizes, brands and configurations for ostomy bags.   One does not walk into a pharmacy and pick up what you need off the shelf.  I called every specialty pharmacy in that city- with no luck.  I talked with several hospitals- no help.  In the end,  due to the gracious above and beyond efforts of her boyfriend’s parents, an extra bag was located.  

More recently , our family made a weekend trip over the holidays to the Opryland hotel.  Sarah packed  her TPN on ice, her IV pole, her meds as well as her clothes and toiletries.  This time the item she forgot actually caused her pain.  
We had returned from dinner when she began the process of accessing her port so that she could hook up her nightly TPN feeding.  Much to her dismay, she had forgotten the numbing cream that she uses before she sticks herself with the port needle.  Ouch!  She had to stick herself with that needle while fully feeling it! She certainly had our sympathy.

She and I have a little trip coming up.  I’m sure she will be annoyed when I recite a list of items to inquire whether or not she remembered to pack them.  I guess a little annoyance is better than the pain or aggravation of not having what she needs on a vacation in her not so normal life.

  

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