We had another dermatologist appointment for Jack and I ended up taking him by myself (usually Kevin goes with me). The dermatologist is really nice and having boys himself is vey understanding of a parents questions and concern.

He was very pleased with Jack's hair regrowth but did give us some cream for the patches that were still bald. He also explained that the color of the hair comes back once it gets a little longer. It was then that he kindly shared that the hair loss could come back in five years or ten years - it's pretty unpredictable. He also told me of an organization that gives great information and support - naaf.org.

I guess up to that point in the back of my mind I was hoping this would be sort of a one time thing. Some fluke that would go away and we'd be passed it. But sitting in that office it hit me, "This is our new normal...it could be a lifetime thing". It's hit a little hard. Not the fact that I have to look at him that way, but the reality of helping him deal with all he will face socially. We have already had wonderful people politely asking if he's ok and they have been so kind. However, When he starts losing it again, how old will he be? How will he handle it? I know all the great answers to this but it's my Mommy's heart that hurts and fears. This is not the journey I would have chosen but it is the journey God has called us to.

I know that Jack is fearfully and wonderfully made by The Creator and he is beautiful both inside and out. My heart is now being drawn to learn about this disease and advocate for education about it so people understand what people with this disease face.

I am very thankful for the resources of the National Alopecia Areata Foundation and the support and information it offers. Check out their website at www.naaf.org and it will give you some great information about the disease.

This is a definition they give:

Alopecia areata is a common autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body. It usually starts with one or more small, round, smooth patches on the scalp and can progress to total scalp hair loss (alopecia totalis) or complete body hair loss (alopecia universalis).

Alopecia areata affects approximately two percent of the population overall, including more than 4.7 million people in the United States alone. This common skin disease is highly unpredictable and cyclical. Hair can grow back in or fall out again at any time, and the disease course is different for each person.

I wanted to take a few minutes to explain, in my layman's understanding, what Jack and Emma's heart "issue" is. Emma is scheduled to have her procedure May 17th and Jack was released as a patient with the Pediatric Cardiologist last year. I know that I lack a lot of the Medical terminology so this is a very basic and not by any means a complete explanation of the issue.

Jack and Emma were both diagnosed with what's called paten ductus arteriosis (PDA). Basically a small artery outside their heart (there to bypass the lungs while in the womb) did not close after birth like it should have. So, the Dr.'s have to do a catherization in order to put a stint in and close it up. Once the procedure is done they will check her occasionally to make sure it went well but the tissue will grow around it and it will not have to be done again. It is a outpatient procedure so it will only be a day.

This is not at all related to Jack's loss of hair. That is it's own separate issue that you can read about here:

http://paradoxicalpen.blogspot.com/2010/11/his-hair-loss-and-my-pride.html