Update....

We got home from Atlanta on Tuesday. It was an awesome appointment with our new favorite doctor. We found out a LOT of info and ways to help L. First of all, I have to say, her new Mito dr. is wonderful!! She has the most caring, compassionate, and loving spirit of any dr. we have ever met with. She has a true heart and soul for helping people. She spent 2 hours with us helping us help L. I have been telling everyone what an answer to prayer she is. She answers my emails within a couple of hours also. We walked away from our appointment with such peace having someone on our side to help L. It has been a huge relief to know she is walking along with us through this journey. She is the best!!!

Here is what we learned at the appointment:
L has an official clinical diagnosis of Mitochondrial Disease. She is no longer mild but is now in the middle of the spectrum with symptoms and progression.  Our job is to keep her as stable and well as possible. This does include quite a bit of supplements and medicines. The dr.explained it so well to us. Everyone is at a baseline of mitochondrial function. During times of sickness and physical stress, most people's body can tolerate that stress fine. People with Mito cannot jump to the next line of stress without a lot of support for their systems. Her systems would begin to shut down without this extra support. We have seen her gut do this when she is sick or her body is under any kind of stress. She will now be on daily medicine for her abdominal migraines to cut down on the stress of those on her body. Another thing we will be doing is giving her corn starch mixed with water at night to keep her blood sugar up at night. We have been checking it and it is very low in the mornings so this should help keep it stable. The dr. is also going to be doing some testing. We hope to find out what complexes she has from these Buccal swabs. She is also going to be running blood tests every 6 months to see where L is in progression. The dr. also gave us protocols for school next year, the ER, and for surgical procedures if we need them. We will Skype with her in 6 months and return to Atlanta in a year. If she begins progressing fast, we will return to Atlanta before a year. She is going to work with our Pediatrician here when L is sick or in the hospital. She also wants L to see a Cardiologist to check her heart since a lot of Mito patients have heart issues. We may also go see a GI dr. for L's motility issues. We are going to Duke for her Dermatologist appointment on the 22nd. The dr. said her rash/hives could be autoimmune so she said it's a good idea to go ahead and get it checked out. We asked about her red dye reaction also and she said what could be going on is that the red dye is causing an inflammatory response in her brain.  She also said we need to keep her electrolytes up because she's having Autonomic symptoms such as purple skin and heat intolerance. The fluids and electrolytes should help with that. We also have a plan for pain management for her pain. We covered quite a bit in those two hours. 

It was a great trip. She has had a few abdominal migraines and fatigue the past few days. Right now we're using Zofran until we get her daily medication. We're trying to get her the rest she needs but she's still really tired. She's also really thirsty lately so we're trying to keep up with her fluids. I"m thinking it's the heat but we're keeping an eye on her. If she starts looking worse, I'll probably take her in to her ped.

I think that's it. I'll try and update again soon.