This is just an update for all our friends and family who aren’t getting info from our Facebook connections spreading news on our behalf. It’s been a blur of a week since Sophie’s surgery and we are beyond exhausted. First, the good news: the surgeon was able to resect approximately 70% of the tumor! Wow! So much better than we hoped for! And the other good news: Sophie recovered very quickly and was able to be discharged just a few days after her surgery. This seems crazy- I mean, her skull was cut open with a saw. Important brain tissue and nerves were majorly irritated. And she’s sitting up and feeding herself and talking and ready to go home??? Simply amazing.
Here is my friend Jill visiting Sophie and reading Thomas the Tank Engine books to her nonstop to keep her calm while I ate a delicious healthy dinner courtesy of my friend Kat who also stopped by. Thank goodness for my amazing friends.This is just 24 hours later. She went from unable to turn her own head in bed to sitting up in a bumbo chair! She doesn’t look particularly happy but that is mostly thanks to the high steroids she’s on and her discovery that her “eyes not working” 😦
The not-so-good news: the consequences of surgery. Both Sophie’s eyes were affected. The right one has beating nystagmus (vibrates right to left) that is slowly improving, and the left is affected by 6th cranial nerve palsy. This makes her have double vision. We are hopeful that with time and treatment her vision will be restored but it could take anywhere from a few months to a year or possibly eye surgery. And most difficult of all, Sophie has serious cerebellar issues. She has no idea where her body is in space. Her head is constantly bobbing around and she falls over when seated unless she is propped and supported. She can scoot on her bottom a few feet towards something she wants, but not reliably and it usually ends in a face-plant. So she basically has no independent mobility. Both arms shake up and down when she tries to reach or do any purposeful movement but her right arm has improved a lot and the past few days she was has been able to feed herself without also sharing food with the rest of her face and 3 foot perimeter around her high chair. And today she was able to do a simple knob puzzle! So it’s looking like she will at least get function of her right side back quickly. Only time will tell how much of her left side will heal.
Here she is sleeping on the drive home. Her left eye doesn’t close all the way.
And then there’s the matter of what to do with the remaining 30% of her tumor. The part wrapped around her brainstem. Laith and i have a meeting with her medical team in DC Tuesday to discuss our possibilities. More updates coming soon as we recover from a week of “roid-rage” (Sophie slept 2-4 hours TOTAL each night, and screamed most of her waking hours until we FINALLY adequately weaned her dosage to a more suitable level yesterday).
All in all, despite the challenges we face, we feel so so thankful that Sophie is doing as well as she is. This was a risky surgery and Sophie has not only survived it, but woke from the procedure with no other deficits than the ones her surgeon was sure she’d experience at the very least.
More to come soon- I have photos from our Bounce-a-Thon fundraiser (huge success and huge help to us!), my friend Karen’s visit, our hospital stay, and my Dad and Janice’s visit.