Princess Lily got an official Princess ribbon in the mail today from our friends Anita and Jeff Parker! Thanks Parker family!
Mrs. Todd's class at Fred L. Wilson Elementary School made Lily a
"Digital Get Well Card!" Lily had never gotten a Digital Get Well
card like that before and was SO excited!
Lily got her drain out today and had a CT scan. The scan looked good and we may leave intensive care tomorrow.
Lily's had a pretty good morning and slept well last night. No more seizures! They are changing the seizure meds and she's going to be on them for awhile, just in case. She is still favoring her left side, but she is starting to have a little more control over right-sided things...particularly being able to gaze/look toward the right.
Lily is a little more with it tonight. She has slept most of the day but that is due to surgery in combination with anti-seizure drugs and more anesthesia with the MRI this afternoon. We'll be in ICU for at least another day, maybe two. For now, they are watching all action on her right side to make sure it is symmetrical with the left. She has talked a little tonight, asking for strawberries and apple juice.
These are Lily's favorite songs and what she'll be listening to while we're in the hospital. She loves her princess music and right now is loving Lady Gaga's "Monster" and "Telephone," as well as the Black Eyed Peas, "Boom Boom Pow." If you'd like, add your own favorites in the comments section, and we'll add some new songs for her to listen to while she's recuperating!
We really aren't sure what to feel at the moment, but it's a combination of frustration, fear, relief, and a little numbness too.
Last week, Lily's follow up CT scan showed some irregularities with the tumor, and she had to have another MRI today. The MRI showed that the tumor had grown 10-20% in just the last month.
While the doctor still believes that it is a benign tumor, he is not going to wait before doing something else. We are having surgery on Friday to try and remove as much of the tumor as possible. If he gets it all, we're good to go, if there's some left, then we have to go through chemo as well.
The bigger issue right now is that they have to go through healthy brain tissue to get to the mass, so there is a chance that we will also be dealing with some sort of damage. He thinks that this could be minimal, but because of her age, she will most likely grow into new pathways to cover for anything that gets damaged during the surgery.
While we're scared about the surgery, we're also a little relieved that they are planning to go ahead and do something about it. The surgery on Friday will last around six hours.
It was very frustrating thinking we would just have to live with this monster sitting in her head--never knowing when this might happen. We kind of feel like we're better prepared to deal with it right now, in this moment, versus a surprise years down the road.
Our doctor is a capable, compassionate, and Christian man, and we trust him to do the best he can.
We continue to ask for your prayers, and know that we appreciate every single one. We'll update more on Friday or Saturday morning...but between now and then, we are going to be the most normal folks you've ever seen!
-Mike and Liz and Lily
We went to the Buffalo Science museum today. Lily wanted to see the 3 d movie about dinosaurs. We also saw the robot dinosaur exhibit. All of their dinosaurs had facebook pages. Lily played with each of the dinosaurs' profiles on the computer. She also wanted a picture with the stuffed buffalo, which we did.
