Saturday, February 25, 2012

A Long LONG Road

I spent the morning going over old posts from the last 2 years.  Gosh I can't believe how far we have come....And how far we have yet to go.

Tuesday morning we FINALLY meet with the Endocrinologist again regarding Bailey.  Back in late 2010, there was a suspicion that Bailey had Cushings Disorder.  A clinical observation and medical history taken back then pretty much gave a definitive answer...However the cortisol test was "inconclusive"....Which meant we had to wait a YEAR to test again...So here we are.

It's so easy to just get swept up in all that's going on.

There hasn't been a week, of not having to deal with something medical.  Whether it be related to NF of not...It just never seems to end.

Despite all the medial issues...I am so proud of my family.    We won't give up...and as ALWAYS...We will keep THRIVING!

1 comment:

  1. I have heard of that disease. One cause is a tumor on the abdrenal glands and 10% of people with nf get them. I was denied from a medical study at cedar sinai due to the high possibility of my maybe getting a tumor there and the investigational drug giving me a heart attack. I would get your daughter a kidney ultrasound which I had and they found an enlarged kidney no problems with the gland though. I can tell your oldest daughter is overweight and seeing the rest of your kids a healthy weight makes the chance of cushings disease higher (one symptom is non food related weight gain).