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HAIR!



Just look at Cade's hair. It was perfectly fine at Christmas time. So, that is about 4 months or so ago. What the HELL? Looking at these pictures reminds me of how beautiful his hair once was and how much it is turning to shit now.
I am pissed..really pissed. What is going on??? I need answers. Slowly started to look frizzy, then just flat out fried, now balding and extremely damaged. I am scared to wash it or brush it because I don't want him to look like a mangy dog..as he already is. His face is still Beautiful of course, but you get the picture. :(
Dr. Miller is looking into things. She has done a very large work up and has come to these conclusions so far...
1. Thyroid is functioning on the low end of normal
2. High Vitamin A levels
3. IGF-1 levels are high, so GH needs to be lowered.

Looking all of the above things up on the Internet all has some sort of possibility of hair loss. Go Figure...tells me absolutely nothing.
We are waiting to see what the Dermatologist says when we see her on April 26th. I feel like I cannot wait that long. It is like a whole 2 weeks...He could possibly lose all his hair by then. I sure hope not. I am wondering what they can/will do anyways at the appointment. I think a hair analysis needs to be done or hair testing. Hopefully that will take us straight to the source! Please pray for my sanity...before I my hair starts to fall out as well.

Much love,
Maegan





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