
Hi friends, It’s been a little while since my last medical update. I recently got back from another neurology appointment at University of Washington Medical Center. This appointment was with a headache neurologist regarding my migraines and other neuro symptoms. It was a very thorough visit, and I’m so thankful the Lord answered our prayers for […]

Hi, friends, I’m sorry it’s taken me a while to write a Seattle update on my neuro appointment. More than a week ago, our internet line accidentally got cut during construction—you never realize how much you use the internet until you don’t have it!! π Regarding the “new” symptoms I’ve been experiencing since April (migraines […]

Hi, friends, It’s been a little while since I shared a medical update. To recap, I’ve been experiencing buzzing in my right ear, and I lost the ability for my right eyeball to look to the right. I’ve also been dealing with nystagmus and migraines about every other day (sometimes every day). My pain doctor […]

Hi, friends. π I just wanted to let you know what’s been happening lately. In the middle of March, I started losing muscle control in my arms/hands. π If I’m holding something, my hand will flop but then regain control quickly. Or if I’m holding my phone to text, etc., my fingers will suddenly tap […]

Hi friends, *If you’re wondering why there are random bullet points, my website had an update, and when I press the “enter” button to make new paragraphs, it doesn’t seem to work. So using bullet points is the only thing I could think of to make spaces in between paragraphs. π
Anywho, I just wanted […]

Hi friends, I just had some prayer requests again. It’s been almost 3 weeks since I came home from the hospital, but I’m still really weak. So in addition to physical therapy, my doctor referred me to occupational hand therapy at OHSU as it’s so hard to open/hold things, hand letter, etc. (the above […]

Hey friends, First of all, I’m sorry it’s been so long again since I last blogged. π Last month, I had my mitochondrial appointment in San Diego—traveling and the trip in general was hard physically (more details below), so when we got home, I had terrible nystagmus and other rough mito symptoms. And then, […]

Hey friends, It’s been exactly 2 whole months since I last posted—I’m sorry I haven’t kept you in the loop lately! In October, I had a tunneled central line infection (thankfully, it didn’t spread to my blood). My central line site was really tender and oozing a little. So my GI specialist quickly […]

Hey friends, It’s been more than a month since I last posted….and sometimes, no news DOESN’T mean good news. π This will be extremely long, but I want to document everything to remember….so here goes! About 24 hours after my hip labral repair surgery on August 10th, I went into septic shock (there […]

Hello friends, I recently had a long appointment with my urology surgeon at Doernbecher’s. She explained how this is a very major bladder surgery….and I was so shocked to hear her say that this surgery can last up to 12 hours….(for example, it could start at around 7:30 AM but not end until 7:30 […]

Hey friends, Just a short update. Since the day after Thanksgiving, I’ve been sick with low-grade fevers, a painful sore throat, swollen glands, a barking cough day and night, and terrible fatigue. The doctor thought at first that it was a bad virus, but now he believes I have a bacterial infection in my […]

“Joy is not necessarily the absence of suffering. It is the presence of God.” ~Sam Storms Last week, I threw up a ton again, and it never gets easier. π We don’t know what caused it this time…but my GI dr. thinks these vomiting episodes are from my gastroparesis/intestinal dysmotility. My feet […]

Hello friends, For those who didn’t hear, my grandma passed away the day after Thanksgiving. We had a beautiful service for her this past Saturday. We all miss her so much. :'( It sure is different not to have any more grandparents living. On November 20th, my GI dr. called, and I got diagnosed with […]

Hey friends, My liver biopsy last Friday went very well! Thank you so much for praying! The doctors were able to obtain two specimens without complication. After the biopsy, though, my kidneys took a hit that weekend, and I suddenly gained 4 lbs. of fluid. π We weren’t sure what was going on and if […]

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… π The dysmotility in my small intestine has gotten so much worse. Mitochondrial disease is horrible! I’m being followed very closely by my GI […]

It’s so good to be back in Oregon!! π Missed my siblings so much! Last week alone, I had 8 appointments at CCHMC—that was crazy busy! But these past weeks were incredible, and I’m again so amazed at how thorough and caring the doctors/nurses are at Cincinnati Children’s Hospital Medical Center! I’m so blessed to […]

Hi, everyone! This morning, I saw the mitochondrial disease specialist and genetic counselor in the Human Genetics department at Cincinnati Children’s. We went over my history/new symptoms and discussed my nuclear mitochondrial exome sequencing results. For those new to my blog, I had my nuclear mitochondrial genes sequenced through a lab called Courtagen Diagnostics […]

Yesterday: Saw cardiology and orthopedics for my POTS disorder and back pain. Will update some other day about how these appointments went. π Today: It snowed about 4 more inches this morning here in Cincinnati! Sooo fun and beautiful. Had an abdomen x-ray to follow up on this GI test I had this past Thursday […]

I had a great neurology appointment today! Things are really moving along now. :o) This is what’s on my plate the next few weeks. She wants me to get another MRI, but this time it will be of my lumbosacral plexus nerves (isn’t that fun to say?). π She also ordered another diagnostic test called […]