Asa has been so irritable lately and today was the last straw! I tubed him!!! I thought (think) that is poor behavior is due to the fact that he is hungry. And he has never been good at taking a hint that his body needs food, thus the tube! So today when he wouldn't eat and was soooo hard to get along with, I got out the extension and 60ml syringe I'd just packed away and I fed the baby! Unfortunately his behavior didn't improve so maybe I'm just grasping for a cause and effect here!
We have also upped his Q10 per Dr. K's directions and I wonder if this could be attributing to the problem. Ideally the extra Q10 would help his body but I don't know if that is working for him! I've posed the question to my favorite specialist, the other moms and will likely have some sage advice soon!!
In other news today, I emailed our neuro at Vandy (3 times actually) about the 23 hour EEG Dr. K recommended. I also called the insurance company 3 times. After all of that I still have no answers! Turns out we may be able to do the testing at home, well, a hotel cause to make 2 trips to Vandy back to back is NOT gonna happen! We live 3 hours (each way) away. Still the neuro kinda left it as my decision. REALLY, cause I'm qualified to make these medical decisions! I have also posed this issue to my trusted mom advisors! Where would I be with out ya'll!!!
On a serious note.... one of the mom's I met online lost her sweet baby girl to mito. This Mom has been a huge warrior and put together 2 great videos of mito kids to help raise awareness. Her blog struck me tonight and I want to share it with you. It is because of people like Jen that we will one day have a treatment or cure. I'm so hopeful it'll be soon!!!