I haven’t been posting much and this might be the longest break I’ve taken from my blog in a long, long time. Ever since I found out about my thyroid nodules, I haven’t been wanting to pick up my camera or write or do anything but be with my family. I don’t think I even posted the biopsy results… the right nodule is benign and the left nodule is a follicular neoplasm with Hurthle cell changes. What that means in English is that it could be benign or it could be Hurthle cell carcinoma… a type of thyroid cancer. The only way to know for sure is to take it out so I have to have a total thryoidectomy; that will happen in the first week of September. In the midst of second opinions and pre-op visits with my pain management doctor, cardiologist, and family doc, Anna had a 2-day inpatient video EEG at Dell Children’s Medical Center in Austin last weekend.
It’s been six long, wonderful years since Anna’s last tonic-clonic seizure. When her menstrual cycle started a few years ago, we saw a lot of behavioral and mood changes (not uncommon, ha ha). She would have cycles of raging, crying, sleeping that felt neurological so her neurologist, psychiatrist, and endocrinologist have controlled those episodes with medication. Last year at school, her teacher and the bus aide reported seeing staring episodes that looked like absence seizures. We have seen them too. She’s come out of them agitated, disoriented, and just off, so we think she may be having some partial seizure activity. One night during dinner, she was mid-chew when she spaced out. When she came back a few seconds later, she choked a little and was scared. We were hoping that this VEEG would capture one of these episodes and let us know what she’s experiencing.
Thumbs Up (taken with my iPhone)
We checked in on a Friday morning. I had my alarm set for 4:30 since we were supposed to be there at 7:00 and it’s an hour-plus drive… but I overslept. Ugh! Anna woke me up at 6:15 and we were sooo late. The folks at Dell were so nice about it, it wasn’t a big deal at all. We got settled in Anna’s room and the EEG tech came in to get her hooked up. Jennifer was kind and patient, explaining everything she was doing. Anna did great! It was 2010 since her last study, so she didn’t remember what was involved.
Assistance League of Austin Gifts (taken with my iPhone)
Shortly after getting started, we had a knock on the door. The sweetest ladies were there from the Assistance League of Austin with a cart full of goodies. Anna could choose a toy and a book, so she got a Barbie Rapunzel and The Little Puppy book. I must’ve read that book at least 200 times to Jenny when she was little. <3
The nursing staff was AMAZING all weekend. We had Callie on days and Deana on nights (with Stephen joining Deana on Saturday). The whole experience felt more like a hotel stay. We could even call down to the cafeteria and order anything off the menu at any time, and they would bring it up to her room. Dr. Perkins was the epileptologist on staff and read part of Anna’s EEG from Friday night. He said he saw one spike, that was it. He also noticed lots of arousals and recommended that we do a sleep study. We meet with Anna’s neuro in early September to get the full results, but I’m not expecting anything unusual.
Friday afternoon, a family friend dropped by to say hi. Lynn brought Anna a Minion balloon which was the best gift… Anna is so into the Minions right now…. and the app called Minion Rush. Kevin the balloon brought Anna a lot of joy.
Anna did so well, I could not have been prouder of her! She was not anxious, she took screen breaks, she rested, she was relaxed. She was kind to everyone who came in and did everything that was asked of her. She always has been, and always will be, my hero. And that is why I will do whatever it takes to be healthy and here for as long as I can.
Thanks for looking. Thanks for prayers. Thanks for the love and support. I’ll keep you posted.