Sunday, August 30, 2015

Life in General

Welcome to another post about our comings and goings.  The Staley Family just keeps trucking on. We take our hits, but nothing stops us.  We motor along and wait for the next hit.  What else is there to do.  We can't give up and we don't give up and we won't ever give up.

Madeline is still our little Marfan, but we have way more questions than answers at this time.  If you'd like to learn more please head to www.marfan.org.  They have so much info.  She is in the process of getting braces.  A process she is not looking forward to for the next couple of years.  She still is our little fish.  She amazes me in the water.  She just makes it look so effortless.  Who knows where it will take her.  I hope it takes her where she wants to go...where that is hasn't been decided yet. 

Cameron is probably going to be heading to an eye operation in the near future.  He has a pretty severe case of double vision that happens very often.  We were hoping to fix it with some prisms in his eyewear, but he has to make things difficult by seeing two on the horizontal and vertical plane.  That's the breaks.  He is very active with school, reading and golf.  He may not be very good...probably because his eyesight was much worse than originally thought, but he keeps on trucking.

Paul is busy with the Scouts and work and kids and being mister mom when he is off and I am working.  He is an amazing strength and support for me.  I could not do what I do without him.  Someday he will be recognized on more than just the home front.  

I am still the hard working mom who runs and runs and thinks I can do it all on my own without the help of others.  I am a work in progress.  My Young Women and my kids keep me going every direction, but I probably would not know what to do with myself if I was't going everywhere.  

Life is the way it is and I wouldn't have it any other way.  Because someday we won't have what we have today... and that is all that matters.


Friday, January 30, 2015

News From the Homefront

It has been quite awhile since I have posted.  Our little family has had some interesting life changes that has made us reflect more on our little family and how important it is that we are together as much as possible.

Our little Bama (Madeline), has gone in for routine cardiology appts. since she was 4 years old.  She was diagnosed with a mitral valve prolapse with regurgitation at that time.  On Nov. 17, 2014 she went in for her routine cardiology appt., but it wasn't routine.  They noticed a change in her aortic root and stem.  There was some growth.  Blood tests and genetics confirmed what the cardiologist thought she might have, Marfan Syndrome.  A genetic disorder that affects the connective tissue in the body.  The family is being tested as well.  We are awaiting test results to come back for the rest of us.  Our little active athlete now has a condition that does not allow her to play any contact sports or do any heavy lifting of any sort.  As it may put a strain on the area of her aorta that is already weakened by her disorder.

Yesterday we had a scare that no parent ever wants.  I got a call while I was a work saying Madeline was complaining of pressure and a sharp pain in her chest.  A call to the advice nurse and we were on our way to the ER for some tests to rule out any of the scary stuff that can happen with Marfan Syndrome (aortic dissection or pneumothorax).  All test came back normal so they think that it may by musculoskeletal pain due to her Marfan disorder.  The muscles that run along the chest wall could have loosened causing discomfort because of shifting.  It's all kind of crazy, but we take it in stride, keep her medical history in a binder for future appt., and continue on with a little piece in the back of our mind to watch our little Bama very closely.