Sunday, March 20, 2011

Updates and Strange Reminders

I haven't blogged here in a long time, but this is where I blog about family and Ashton's journey with CF.  I thought some of you might be interested in the new doctors and how things are since we moved to Knoxville.  Ashton's health continues to be outstanding, amazing even.  There are reminders, however, that everything is not exactly right.  These are things that would not necessarily lead us to believe she had CF if we did not know, but since we do know, we are able to recognize them for what they are.  Her morning cough is probably not just allergies or sinus drainage.  Her boughts with mild constipation and occassional vomiting are probably very, very mild CF related symptoms.  We know we are so, so blessed that she is such a healthy little girl. 

This weekend our family went to the American Museum of Science and Energy in Oak Ridge.  It was free admission days so we took advantage.  There was an exhibit where  you placed one hand on an aluminum plate and one hand on a copper plate and the electricity from your body made a needle move.  Then you were supposed to breath on your hands to make them sweat, and the salt on  your skin would make more electrcity go through and the needle would move more.  Neat little gadget, and Aaron and I both did it with the needle moving as it should.  Aaron put Ashton's little hands up there and the needle went off the chart.  If you'll remember from what I wrote at the beginning, one of the ways they diagnose CF is by the increased salt content in the sweat.  A strange reminder that things are not exactly normal. 

As far as East Tennessee Children's hospital... AWESOME.  The doctors are much more aggressive.  This could prove to be not so great, but for now, we are happy.  They told us that kids as healthy as Ashton worry them because they can slip through the cracks until they are really sick.  They do not plan to let that happen.  So far they have only added a nebulizer treatment to her normal treatment regime.  It is a hypertonic saline solution (yes, that is salt water) that she inhales as a mist twice per day with her regular inhaler and vest treatment.  She hates it, but they say they have seen kids go from completely junky lungs to completely clear after six months of this, so they put everyone on it.  I'm game.  They also do a bronch once a  year where they take a sample from her lungs to make sure they catch anything that could be growing ASAP. 

A nice side treat is that they have a closet full of toys in the waiting room and one lady is in charge of them.  She hands toys out and keep them clean and that way everyone can play and no one catches germs from the toys.  She also sets up the exam room with toys, colors, stickers, etc.  Last time Jackson went and they made sure he had plenty to keep him occupied as well.  It made clinic day so much easier. 

Jackson is doing GREAT in school here and is all about science lately.  We are trying to nurture that.  We love Knoxville, but we are so thankful for technology that keeps us connected to each of you...we love all of you.    Hopefully it will not be so long until next time.