Good morning, my friends ... I'm checking in quickly to report that all is going well so far with Earlybird's ambulatory EEG! We're halfway there!
Our trip into Children's yesterday was successful - thanks in no small part to my mother who accompanied us and provided EB with that extra comfort he needed. And though he balked quite a bit initially at having the electrodes applied, the staff was able to figure out how to do it as quickly and sensitively as possible. EB left the hospital with a soft "helmet" wrapped around and taped to his head, keeping all the electrodes in place, wires tucked into a backpack which was (and still is) strapped around his torso. He was so wiped out from the ordeal he went to bed at six, and slept straight till three - but the important news is, the EEG is still in place! He has not bothered with it, so hopefully the transmitter is recording the data the doctors need to get a closer look at our Earlybird's precious, beautiful brain. :)
Today we bring EB back in to have the whole contraption removed, and then we wait for our follow-up in April to discuss the results. In the meantime, we'll continue with his anti-seizure medication - oh, and speaking of! - I don't think I told you all the good news. We were able to find a pharmacy that would make up his med and a vitamin B solution without ANY synthetic dyes, flavors or preservatives!! We're hoping this will help EB tolerate the meds a bit better - and we're trying out this option before considering a switch to another med. (The one he's on now is affecting his mood and behavior - possibly it's just the additives, but we will see ... one small step at a time!)
Thank you all so, SO much for your prayers and support. You cannot know the comfort and strength they have given me. When we were safely back in the car yesterday, EB was all set, and I felt like I could finally breathe ... my thoughts went to you all and your prayers on our behalf. I KNOW they made the difference, and I appreciate it so much.
So here we are then, Ash Wednesday morning, and Lent underway - I've barely spared it a thought, it seems ...
My hope this season is to give more of myself every day and to serve my family as they need ... that I need less for me, so I have more to offer them ... and that, in all my words and actions, I express my love for, and deep gratitude to God.
Blessings on your day, my friends ... thank you for listening, and caring ... I'll be in touch again very soon.