Lily saw her doctors this week as a follow up to the last MRI. (Which we had previously posted about briefly...)
The neurologist, neurosurgeon, and oncologist all work together and we get to see them all at once at these appointments. They are an incredible collaborative team!
They re-affirmed what the surgeon told us just after the MRI, that it looked, in his words, "WONDERFUL." The area where the tumor was removed was still pulling in contrast, but he said that it looked better than before. The small piece of whatever is still there seems to have shrunk significantly and the surgeon indicated that it is most likely just scar tissue.
The fluid on her scalp has COMPLETELY been absorbed, so there's no planned future surgery at this point. Thank God! She doesn't have to wear her skull cap anymore! Also, at the beginning of March, she came off of ALL seizure meds. We've noticed significant improvements in her mood and personality since coming off those medications! She's losing a little hair around the scar area on her scalp, but you can really only tell if I'm the one responsible for combing her hair. If Liz combs it, you'll never notice it!
Right now, she's about as normal as they come, and then some. She has 5 imaginary friends: Lily #2, Tiny, Shiny, Don, and Buddy. She is VERY creative and loves playing with her friends at "Grandma Janet's" (Kristen Marchiole's Mom). She loves to draw, she loves technology, and she loves her rhino. She says "I love you" a lot, and always follows it with "Can I Have ______?" She's becoming very expressive and wants to know what everything means. This week's words were "cooperation," "compromise," and "comfortable." (Just a coincidence that they are all "C" words!)
She's trying to decide what she will be when she grows up, and we have it currently narrowed down to a: Chef Princess Gardener Paleontologist.
We will continue the cycle of MRI's every 3 months for the next year and a half. Our next hurdle is the ophthalmologist as we get her eye checked out. Right now, that's the only significant issue we're having. Before the surgery, they warned us of all of the possible complications that could result from the brain surgery, and the laundry list of issues was very overwhelming. To be in the spot we're in now with only having nerve damage in her eye is almost a relief. We can deal with that. She can see perfectly fine, but her eye "wanders" when she focuses, and she seems to have lost some depth perception. Her appointment is later in April, and hopefully we'll find out more when she's examined.
I know we say this often, but it can't be said enough: Thank you for all the thoughts, prayers, and support. Thank you for loving all of us, and thank you for loving our Lily. We appreciate every single one of you...and feel so blessed to have each of you in our lives.
-Mike, Liz, and Lily (and Lily #2, Tiny, Shiny, Don, and Buddy!)
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