Journal entry by Barbara Bradley — Feb 23, 2015

So, long story short is we are having little improvement with medications. The current plan is to bring Katie in on March 5th for her scheduled MRI. They will go ahead and admit her for an EEG to try to capture what is going on currently. They will take advantage of the sedation from the MRI to get the EEG leads on. (amen!) Depending on results, she has a spot on the calendar with the surgeon to implant a VNS if necessary. This is kind of like a pacemaker but to stimulate the vagal nerve in hopes of interrupting seizure activity. Her seizures have decreased in the past week but she is still having them and she is taking a lot of medicine. I am really not sure what is next but I am praying for a clear direction.

To add to our excitement around here, Katie fell last Thursday at school and earned herself 3 stitches. Katie is fine considering everything. The worst past has been keeping her from picking at the stitches. We were afraid to use the “glue” because they said it may not hold up if she was likely to pick. She managed to keep 2 out of the 3 stitches in tact.

I have really been struggling with insomnia. My regular doctor has tried his best but wants me to see a specialist. My doctor pulled some strings to get my appointment with the sleep specialist pushed up. Of course these things can never be during school hours it seems but I was desperate so I couldn’t pass up the opportunity.

I am now trying a different medicine for the insomnia and she encouraged me to enroll in an online behavior therapy. I was a little hesitant but there is no magic pill and I something has to give. I don’t want to be on medication forever and the stress in my life is going to exist in some capacity from now on. I have to learn to manage my stress and anxiety. My brain is basically in a state of hyper-arousal that started when Katie’s seizures returned a few months ago. My mind is operating in a fight or flight state and is defending itself to survive. It doesn’t think I need to sleep. That works temporarily but eventually something has to give. You can’t function forever on adrenaline only.

Please keep praying for my family. Pray for answers, sleep and peace. Thank you for your continued prayers, support, meals and the notes of encouragement. We really need good news for a change and for things to be a little less dramatic around here.