2014

Hey everyone, I just wanted to let you know that I will be getting admitted the day after Christmas.  I’m very thankful for my GI dr.—he’s working at the hospital and not in clinic all this week, but he arranged and coordinated everything so quickly!  I’m not doing very well.  The pro-motility drug I’ve been […]

Hi everyone, We thought this week would have been my scheduled admission to the hospital since I haven’t tolerated glutamine, but we’re trying one last thing to re-mobilize my small intestine.  My GI specialist really wants to avoid TPN (he recently told us he has two critical patients in the hospital because of sepsis from […]

Hey friends, I’d appreciate your continued prayers!  My small intestine is in bad shape.  Still can’t tolerate j-tube feeds or solid food orally.  And I’m now getting distended with just liquids… 🙁  The dysmotility in my small intestine has gotten so much worse.  Mitochondrial disease is horrible!  I’m being followed very closely by my GI […]

Hey friends, We got the CT scan results yesterday!  The images showed that I had something called Buried Bumper Syndrome (a rare complication with feeding tubes)….basically, the balloon on the j-tube (which is inflated with 1 ml of water to hold it in place) got stuck in my abdominal muscle.. :-O  No wonder I am […]

Hi friends, Some of you on facebook know how I had to go to the ER yet again last week for a lot of issues….I was also admitted overnight in the ED observation unit for IV hydration and pain control. It’s been crazy rough and hectic as I’ve had to keep going back and force […]

Oh what a week it’s been..  Thankful for my Lord and Savior who is always there for me in these challenging days. A couple weeks ago, I started dealing with bad spasms in my small intestine and not being able to tolerate j-tube feeds—this is still going on today.  The spasms cause my mic-key button […]

Hello everyone! The mito coordinator down in San Diego was finally able to speak with my mito dr., and he told her he’s almost positive there’s more muscle.  So she’s going to look once more, but in the meantime, my appointment that was scheduled with him in November has been postponed…we should hear more soon […]

Last Monday, we received some unfortunate news. 🙁  I heard back from the mito coordinator down in San Diego, and she explained that the mtDNA sequencing (one of the numerous tests that was supposed to be done on my muscle) at the lab in Georgia was not completed.  We’re not sure if it was a […]