Here’s a Saturday update on DOP:
Today was a great day!
Last night (at 4am) we got moved to a different room in the ICU (for reasons unrelated to us) and got a MUCH larger room just two rooms over from our friends whose daughter is here for cardiac issues. It is quieter and we (that means me at this point) have a lot more room to spread out. This is helpful for me to work on my school and to sleep better since I’m staying with DOP each night.
Here is some updates on where she is at with her recovery this far….
DOP has full movements of her face…eyes, eyebrows, lips, cheeks, smile. Everything! She can move her hands and arms and feet and legs, but is still very week. I just love her smile!
Today, she was able to sit up in her bed…kind of like being in a chair. She has been able to rotate her neck back and forth…albeit….VERY slowly. Bit still! This was a major improvement today.
The nurses removed her catheter this morning in an attempt to motivate her to move more. One time this seemed to work….another, well, not so much. We’ll see how this goes over the coming days.
Her eyes are not lining up correctly. One day they look fine, then the next the left is delayed, then the right. The surgeon thinks this will clear up over time and doesn’t seem to be too concerned. In the meantime, I’ve put a patch over one eye so that she doesn’t have to strain to see clearly.
Over the last couple days, she has taken in a bit of liquids via straw and me holding a cup. But she hasn’t had any solid food since last Sunday….the day before surgery. Yesterday, I got her to eat two small French fries and Brandy got her a Jamba Juice that she drank quite a bit from.
Today….tons! She had several bites of bacon for breakfast, several bites of cheesequesadilla for lunch and tonight she had a few bites of meat and cheese from In-N-Out Burger. Of course, we knew she would eat that! This was all on top of lots of fluids she drank all day long.
Since surgery, she has only been mumbling responses a majority of the time. However, we know she has been able to talk because when she desperately wants something, she’ll say it. And say it clearly. This morning I told her very plainly that nobody was going to respond to her mumbling or whining unless she used real words that people could hear and understand. She didn’t like that, but she attempted to comply most of the day.
DOP is still the same girl! The day after surgery she was whimpering and trying to communicate with two nurses who were taking care of her. They were confused, so I leaned over and asked what she was saying. She kept saying her name. I asked the nurse if she said her name the way it is written phonetically and she said yes. We pronounce her name slightly different that it is spelled and she loves to correct people that “say it wrong.” So, there she was….DOP telling off these nurses on how to pronounce her name!
Yep….that’s my daughter!
Last night she watched a full length movie and seemed to be able to focus on it much of the time. I was impressed since prior to that she seemed to have the attention span of a knat. After the movie she wasn’t tired yet, so I wondered if she could concentrate on a game. So we played a game of Crazy 8’s. She honestly won! She wasn’t able to hold the cards up well, but she knew exactly what she was doing and beat me. But that wore her out!
Today she played with a couple games with me and Brandy, watched a movie, played with some stuff animals and various other things. Today was the greatest day so far! Proud of her!
If you weren’t able to follow our FB posts, here is the current long term prognosis.
The tumor was a low Grade 1 benign tumor, slow growing, and most likely been there for a long time. Possibly several years. There is a slight bit still left behind just as the surgeon thought. As she was scraping it away, she got very close to the cerebellum and if she kept scraping, would cause significant damage that could never be repaired. As a result, there is a tiny thin slice showing up in the post-surgery MRI. But due to the type and slow growth of the tumor, the immediate decision is to just leave it alone and see what happens.
No Chemo! No Radiation! No additional surgery!
As the surgeon puts it, there is nothing wrong with leaving it there as long as it doesn’t grow. So we just monitor with an MRI every three months and see what happens.
It could go away on its own.
It could sit there and do nothing.
Or…it could grow in the future.
But until it does something…we do not do anything. And if it does grow, we’ll decide THEN how best to tackle it based on its rate of growth and the circumstances at that time.
We were just happy with no Chemo.
Please keep praying for DOP. She still has a long way to go. Pray for her strength and fine motor skills.
Pray for continued healing of her head, neck and brain.
Pray for continued eating and her eyes to get better. We can tell that she is bothered by her eyes not working well. Remember, she came in here because of seeing double. So we kinda think she’s angry that it hasn’t cleared up after the surgery…..eh. Not sure what to say about this to her…..
Thank you, thank you, thank you to everyone who has prayed for DOP and brought us meals and supplies. You all mean the world to us and to our Daughter of Purpose.