Hi, everyone! It’s good to be back to the blogging world!
I wanted to blog the first week of September like I had mentioned, but that week was super busy, getting back into the gist of things after returning home from the beach with my family. We had a great time together, but I’m glad to be home because I get more rest and sleep than when I’m on vacation! 😉 Not much rest at the beach meant nystagmus and bad headaches..
Last week, I saw the sleep medicine doctors and had my first sleep study. Normally, the doctors have the techs wake the patients up at 6 in the morning, but Dr. H wrote in the order to let me sleep till noon the next day. I was glad! The study was extremely interesting, and the techs taught me a lot about sleep disorders. But I really hope I don’t have to repeat the experience. :o) I should get results within two weeks!
This past Thursday, I also saw my neurologist and had my 4th EMG/NCV study. The results were abnormal—namely, my right tibial motor nerve shows prolonged distal onset latency and increased insertional activity. Not sure if this is mitochondrial-related…
The spinal tap Dr. G’s ordering is to check 5-methylhydrofolate levels and lactate. She’s gonna be in touch with my pain dr. this week to see if he would like to do the procedure.
Just 2 more weeks and the mitochondrial exome sequencing results will be completed! Yay! All this waiting for results is exhausting. 😉
I’ve been following a blog and facebook page of a mom who has 4 little daughters—her two youngest are battling an extremely rare disease that doctors think is an unknown mitochondrial disorder. My health issues pale in comparison to theirs!
Ever since they were born, Addison and Audrina have had to deal with: Severe Dysmotility, Reflux, Failure to Thrive, Vomiting, Hypotonia, Anemia, Jaundice, Chronic Fatigue and pain, along with frequent infections, Central Apnea, Hypoventilation Syndrome, Supraventricular Tachycardia, Cardiac Dysfunction, Metabolic Acidosis, Moderate-to-Severe Dysphagia, Abnormal Hemoglobin Variant, Kidney Dysfunction, and Dysautonomia. They can’t even eat normal food. 🙁 Please keep them in your prayers.
This amazing family is such an example to me. Their strong faith in the Lord encourages me every day.
So in closing, I just want to say, “Perspective is a powerful thing.” It definitely changes my “vision,” helps me look at life differently, and causes me to be thankful. 🙂