a year ago today, Mikisa had a functional hemispherectomy. words can’t describe the fear i felt on that day as the surgeon cut into our beautiful daughter’s brain and disconnected her entire right hemisphere. i remember sitting in the waiting room, trying to distract myself as the hours ticked by in slow motion. i remember seeing her for the first time after the surgery and thinking, “my God, what have we done?”
she looked so helpless…i felt so helpless. there were two drains coming out of her head, filling bags with cerebral spinal fluid and blood. there was a bandage covering her scar which wrapped around her shaved head in the shape of a question mark. i had so many questions. would she remember us? would she be able to talk? would she be in pain?
as the minutes dragged by in that room in the intensive care unit, i felt myself panicking. i remember asking the surgeon, “what if she never wakes up?” and then bursting into tears as i lay on the bed next to her. i just kept thinking we had made a horrible mistake and there was no way we could undo it. after what seemed like an eternity of waiting, she groggily opened her eyes and looked at us. her first word was “hi”. i can’t explain the relief that flooded over me as i heard her voice. we told her we loved her and that she was so brave. she started singing, “no man is an island” (which we had listened to right before the surgery), and troy and i started laughing with pure joy because it meant that her memory was intact. she recognized us right away and gave us a hint of a smile before drifting into a drugged sleep again.
the first week of her recovery was really hard on her and us. she was so weak and so out of it. she refused to eat and wanted to sleep all day. we sat with her and tried to interact with her, but she didn’t even want to listen to music or watch movies. we weren’t sure if she would need months of therapy to regain all of her skills, but we tried to be patient and calm despite our fears. around day 4 of her recovery, she took her first steps with assistance. that was a moment i will never forget! i was so proud of her and so amazed at her determination.
we stayed in the hospital for two long weeks. mikisa moved to inpatient rehab for the second week, where therapists worked with her all day every day to help her regain some of her skills. she had to work so hard, and she kept telling us “i want to rest.” it was challenging to say the least. we celebrated thanksgiving in the hospital…we had so much to be thankful for! it was humbling to be on the receiving end of so much love and support from our friends and family.
once we got home from the hospital, Mikisa started feeling a lot better! she was able to walk independently by christmas, and got back to her baseline with speech by the time she went back to school for half days in January. we couldn’t believe how quickly she bounced back!
2015 has been a year of healing and development for our girl. she continues to amaze us with her progress, and we know for sure that the surgery was the right decision! she has not had a single clinical seizure since before her surgery!!!! that is absolutely incredible:) we have weaned her off of two of her heavy seizure meds, and she handled both of those weans really well. she has had several overnight EEGs, and they showed drastic improvement.
Mikisa is doing really well in school…she is learning to read, and her handwriting is so much more legible. she is starting to pick up some basic math skills and is able to focus for slightly longer periods of time. her speech has improved dramatically, and she is understanding so much more of what we tell her. she is very social, and tries to connect and interact with everyone she meets. her behavior has gotten a lot better–she is much more mature. we are blown away by how different she is now. we are so proud of her! it is truly amazing what she can do with 1/2 a brain. obviously, she still has significant delays and some things are still very hard for her, but she is learning and growing every day and she is happy! her personality is larger than life, and she brings joy with her wherever she goes. we love our sweet girl more than she will ever know.