My apologies for not updating sooner. Olivia's surgery went SO very well from beginning to end, the entire process. This is an especially amazing fact considering we had the surgery on the very same day--SAME TIME--as the 2nd-worst blizzard Oklahoma has ever seen. We stayed at the hotel nearby the hospital the night before to shorten the distance to drive (or even walk, I was fully prepared to wrap her in blankets and walk across the highway to the hospital if I had to!) on the treacherous roads. Olivia was having fun the whole time. She thought we were on some kind of adventurous trip. My car was completely blocked in by snow the next morning, but her father made it safely to the hotel in time to pick us up and get to the hospital in plenty of time. One of the most amazing things was her surgeon prayed over her before the surgery, which was a very comforting thing to me. Even though my friends couldn't be there with me in person due to the weather, they were with me digitally by text, email and Facebook!
In general, Olivia is doing so very well right now. She did catch strep throat last week, but it hasn't kept her down for long. She has only had one major seizure lately, and her emergency medication was able to stop it within 10 minutes! That kept us from having to go into the hospital. I did have had EMSA check her over as usual, of course, due to her stopping breathing during the seizure. For those of you not personally familiar with these kinds of seizures, you would be shocked how quickly a person turns blue when they cannot breathe. It is still one of the most terrifying things that happens in our life. And, when doctors or people try to say gobbldeegoop about how seizures just LOOK scary or how they are more scary for the parents, blah-de-blah-blah....oh my, my, my. Yeah, right. Come to my house and say that to my face after you see what I see. She doesn't just look scary like she isn't breathing.....she ISN'T breathing. I have seen so many seasoned medical professionals get nervous and shaky when Olivia goes into distress. If only I had the training and the equipment, I would just do it all myself. Ok, sorry. Rant over. Just went back in mind for a minute there to the beginning of this journey when we heard the standard line about seizures so often from people. I know there are families still hearing that today. We need to educate the public about seizures and epilepsy, because the misinformation in rampant. Hmmmm, I did say rant over, didn't I? :o)
Back to the part where Miss Olivia is doing really well! Her daily seizures have been on a near vacation the past few weeks--Yay!. They come and go just in a random pattern, so we are trying to enjoy the times they GO. :o) We are finally getting some warmer weather, so she has gotten to play outside in the yard a few times. This has made her so happy. She is having an EEG and sleep study done in the next two weeks. I wanted the EEG, so we have a baseline to go by in the event she goes into distress and is thrown into a terrible cycle. That way, if an EEG is done at that time I have something to compare it to. (Her last EEG was a year ago and was "normal") She is having the sleep study to determine whether she is having nocturnal seizure activity or not. This is common for her condition, and she has some concerning behaviors that suggest it, so obviously the test is warranted.
Despite all that she faces that could get her down, my sweet baby girl just laughs and smiles and causes trouble like any silly little toddler. I am SO grateful for that. I am SO grateful for HER!
And, In this moment, I am grateful for friends and loved ones like YOU.
My love to you all,
Hilary
P.S. I wish I could type more, but my hands (and all joints actually) have been just terribly sore lately. As soon as it's better, I promise to keep things more updated!
