Reflections on this past year 2015
This year alone, I had a total of:
- 51 doctor appointments
- 21 physical therapy and occupational therapy appointments
- 5 MRIs (brain, cervical spine, thoracic spine, foot, and heart)
- 2 more surgeries (central line placement and liver biopsy) which makes a total of 9 so far
- 2 overnight hospital admissions
- 1 blood clot in my right cephalic vein
- 14 days of blood thinner injections
- 52 home care nurse visits
- 52 central line dressing site changes
- 3 sleep studies which showed worsening sleep apnea
- 1 skin biopsy
- 2 trips to San Diego to see my mitochondrial specialist in January and July
- 2 genetic tests (whole exome sequencing and a periodic fever syndrome panel)
- More than 150
tubes of blood drawn (thankfully, most of the blood draws were through my central line, so I didn’t have to get poked for all of them
- 5 weeks of IV iron infusions for iron deficiency anemia
- 2 ER visits
- 2 electroencephalograms in June and August
- 1 pulmonary function test
- 1 modified barium swallow study/esophagram which showed esophageal dysmotility
- 2 EKGs
- 2 new medical diagnoses (Mitochondrial DNA Depletion Syndrome and Wilson’s Disease)
- 1 jejunostomy feeding tube infection
- 2 multi-organ abdominal ultrasounds and 1 venous duplex ultrasound study
- 4 “24-hour” urine tests to check histamine and copper
- And more than 365 hook-ups to IV nutrition and IV fluids
I look at all these numbers, and I’m humbled by God’s grace—I truly couldn’t have made it through another hard year without the Lord’s help. He has been my Rock! I’m reminded of the verse in 2 Corinthians 12— But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” I was weak many times this past year, but the Lord made me strong (2 Cor. 12:10).
2016 is upon us… It’s always a little hard when a new year begins because of the unknown, but I know the Lord will give me courage to face whatever comes next! Plus, He blesses me with such loving and supportive friends and family. Thank you for staying on this journey with me! I couldn’t do this without you!
Happy new year, friends. May we hold fast to the Lord and trust Him in everything these next 12 months—He is faithful!!

Saw this quote recently and wanted to share. Perfect as we begin 2016!