Currently I'm still in Delmar, sippin on coffee listening to Mumford and Sons Pandora, waiting on my mom and my baby to come home.
This is our first trip out to Detroit since our surgery. It makes me a little nervous I have to admit. I've seen some suspicious activity in the last few weeks so this EEG is making me a wreck. (not that they don't always) but I'm praying there is nothing going on. Her shunt is still having the fluid issues, so I know that could become an issue at some point.
I'm also excited to see all of the WONDERFUL people and her amazing medical team. I can't wait for them to see her, and see the amazing progress she has made. Charli couldn't hold her own bottle, sit up, barely hold her head up..much less talk when she had surgery! She also had little hair then, so EEG glue oughta be a ton of fun now. UGH. I hope they are all as amazed an impressed as we all are with her. It's because of her strength and resilience, but because of them she is able to do all of these things. They gave her this amazing opportunity. And I don't know how I will ever put in to words my thanks and gratitude. I think about surgery and close my eyes and can feel the chair underneath me in the waiting room, the bouncing non stop of my leg, cranking All That Remains trying to lose myself in the music, with absolutely no idea what was going to happen. Would she be the same when she woke up? Would she have a different personality. Would her smile go away... will she lose what she could do with her right side. Will it even work, or will we still see them. When he said give it a few months and you'll see her take off progression wise, is that true? I'm tearing up now thinking of all of the doubt and unknowns I had that 7 1/2 hours. When she smiled in ICU when she came out of her anesthesia some of the doubt melted away. I questioned so many times was I doing the right thing by letting her have the surgery. She's going to live the rest of her life with half of a brain. Could I do that to her? Her vision...what happens when you take out half of a brain. So many times I thought maybe we shouldn't, I should stop this. But they knew. They saw it in her, and since her hemi I've seen the amazing other miracle hemi kids and their amazing stories, and my amazing miracle hemi kid writing her own amazing story. They knew that once they removed those pesky parts that were left in the left hemisphere she would be ok. She would stop being ravaged by hundreds of seizures a day, stop being a guinea pig with meds. They knew that this was her miracle. They knew that this was her chance. And even tho I trusted them with all of my heart and soul the fear and doubt was still there. I love these dr's with everything I have, but that fear, the demon that never sleeps, kept harassing me..despite how loud I'd turn up my ipod. "I will not fall, I will not fail." over and over. I couldn't. I couldn't give in to the fear. I wouldn't. I didn't. Because if she didn't, I wouldn't. And when Dr. Sood hugged me and said "It's all going to be alright, you'll see" I knew... these dr's know, they see it in her, they see the potential if only the seizure monster would go away and let her brain rest, and learn, and take in the world.
For those of you questioning surgery, I feel your pain. But I can honestly say it is the single most important, best decision I have ever made. Not every outcome is the same obviously. (like us needing the shunt) but if you or your kiddo is a candidate, I urge you to consider every possibility and outcome if that surgery works. Because it is a life changer. One that will live with you everyday, and one that will bring you amazing gifts and miracle days. It's not easy, it's not all flowers and rainbows...but with my heart and soul I tell you it's worth it. HOPE in one Hemisphere. It exists. It happens. There are many wonderful, beautiful adorable stories and pictures to prove it. Miracles happen. Everyday, everywhere, in everything. In my case, it happened in Detroit. So for me, my favorite place in the world is Detroit. It always will be.
So I'm going to shower, put my miracle baby in the car, crank the tunes, and make the 10 hour drive to the city of Miracles, and proudly show the dr's at Childrens one of their success stories. And thank them (again) for the most amazing gift I've ever gotten.
I <3 Detroit.