Christmas is upon us...

Christmas is upon us and I cannot wait!  Spending time with family, eating good food and watching the eyes of my little girl light up after Santa comes.  I must admit, I'm a bit worried that the "cold" Rylee seems to be battling since early November is going to peak into something more over the holiday weekend.  So tonight, as I pack for our visit with family this weekend, I go through the list several times, making sure I have everything she could possibly need--congestion in the lungs, a cough that sounds deeper in the lungs, sinus infection or decreasing oxygen levels.  Motrin and Tylenol, oral steroids, Vick's vapor rub, thermometer, nasal sprays, saline nasal spray, allergy meds, acid reflux meds, and nebulizer vials.  In addition, we'll wheel around our 16lb duffel bag with Rylee's Vest System and her nebulizer. 
But this is our life, and so it will be for a long time.  The Vest has become a part of our daily routine, 3 times a day.  I sometimes feel guilty, it seems that a good portion of the day, my 4 year old is hooked to some kind of a machine.  Up for 30 minutes in the morning before heading out the door to school and she spends at least 12 sitting on the couch hooked to the Vest and nebulizer.  Just prior she is doing a nebulizer treatment of albuterol and Pulmicort, that lasts about 10 minutes.  During her school day, it's a 20 minute session of the nebulizer and Vest--but she gets to play with her Leappad or her director's iPad, so she's not complaining much!  But again at night, it's home for another 20 minute session of Vest and nebulizer and then another 10 minute nebulizer treatment of albuterol and the Vest.  Jeff has been awesome at waking up a little earlier and going to bed later, so that Rylee gets her nebulizer treatments during sleep--helps her get through the night better and it doesn't seem like she's hooked to some machine most of her day.
But Rylee, she is trooper.  She finds something to play with and sits, no matter how long and does the treatments.  Very seldom does she complain or say she doesn't want to do them.  I'm hoping that deep down, she really knows that this is helping her, not only now, but in the long run.  Although sometimes I wish she was, she's not a complainer at all.  If Jeff and I didn't go on gut instinct, more often than not, we'd never know she had a sinus infection so bad that her sinuses were a mess of puss or that she had double pneumonia-one side so compressed that the doctor was sure no air was passing through that portion of the lung.  I often wonder if she doesn't complain simply because she doesn't know any different.  Being chronically sick, especially in the sinuses and lungs, she very rarely knows what it is like to not have pain in the lungs, a wet cough or headaches from sinus pressure.  It is a hard thing for a mother, or any parent, when you realize this.  But, it just adds fuel to my mission, to bring awareness and research to PCD.  These Vogels will not stop fighting for more and better research, so that we don't have to go to bed each night worrying at what age our little girl will develop permanent, irreversible lung damage.  So we continue forward, doing anything and everything we have to, to keep those little lungs of hers growing and free of junk!