Update 5/20/2015

Hi friends,

A short update for you---thank you for praying for me and my family. <3  Things still aren't going well.  Abdominal pain and distention has been coming back with a vengeance.  I continue to deal with daily fevers (it went up to 101.6 one time) and lots of other symptoms.  I've had 13 tubes of blood drawn so far just for lab work ordered by my hematologist.  He's going to be out of town the rest of this week but plans to call me next week to go over results, etc.  Not sure if something will be found at this point.... :/  I wish I wasn't so complicated. :(

To make matters worse, I have a sore/growth on my arm which has been getting bigger and leaking/crusting a ton.  I saw dermatology yesterday.  They're not sure if it's a lymphangioma or what, so they wanted to do a biopsy of it.  The results should be back next week.  When the doctor left the room, he told the resident, "That was unusual!"  I don't like being rare. :(

We also got my blood copper level back, and it dropped once again, even though I'm on twice as much IV copper in my TPN.  Go figure!  I mentioned before how copper deficiency can cause numerous neurological and hematological issues which is probably why I'm still dealing with bad headaches and nerve pain every day.  My feet have been burning so horribly. :(  Next Thursday, I have a follow-up with my GI specialist.  I also see neurology (the local mito specialist) at Randall Children's this coming Tuesday.

P. S. In exactly one month, my parents and I leave for San Diego for the third time to see my mitochondrial disease specialist!

This journey's been rough, and all I can do is be strong, take heart, and remember that the Lord fights for me!