MEDICAL HELP FOR SAMANTHA

Well, the holidays have come and gone. On to a new year. I hope it finds us all in a much better place than 2012 proved to be. So much has happened in the past year. While we've been able to add in a few foods to Samantha's diet, we opened up another chapter of heartache as we venture down the road to uncertainty with the Mitochondrial issues. When we saw the mito/genetic doctor in Atlanta, she put Samantha on what is called the "mito cocktail". This is a variety of things compounded into one medicine. The dr gave us a script for 2 months, while we were waiting the outcome of testing. The dr recently called in a new script for one year. This broke my heart. It indicates that she still wants Samantha on the cocktail. We received bad news from her buccal swab testing and it indicates a mitochondrial problem. We have completed all labs and results are in. We are currently waiting to talk with the mito doctor to see where we go from here. It's so hard dealing with a specialist out of state. Insurance refuses to help out financially because it is an out-of-state doctor, even though I have explained to them that there is no other doctor like this in Florida. We still have the site up and running for anyone wishing to donate to help Samantha. We truly appreciate everyone who has been able to help at this point. More out of pocket expenses are coming for doctor appointments, meds, etc. We seem to have a handle on Samantha's EoE at this point. The G tube was such a blessing, allowing us to start with a "clean slate" and trial food slowly one at a time. We're still not where we want to be and EoE has reared it's ugly head last night. But overall, I think this Mito stuff is going to be much more of a challenge. We are trying to take things one day at a time. That's all we can do.

I haven't updated in a bit because life has been crazy. We took the tiring trip to Atlanta to see the specialist and Samantha has been clinically diagnosed with mitochondrial disease. The trip took its toll on Samantha and once we got home, she became really sick. We have already done some testing that takes approx a month for results. Other tests will be coming up soon. I can't thank everyone enough for their donations. Please share Samantha's link if you can. Your help, donations and prayers mean more than we can say.

Yay for Friday! The weekend is finally here! It's been a long week. Can't believe we go to Atlanta Monday! Praying all works out for the best. Thank you everyone who has donated so far. We aren't close to what it's going to cost but we'll get there one way or another. Keeping the faith.