Today was a good day but also a difficult day. You may ask how can it be a good day and a difficult day all at once. Ellie has shown more energy today, she has not had a nausea episode since midnight last night, she woke up and had a half of a cracker at 4am, a bite of a banana at 8am, a couple of small bites of a chocolate croissant and a small bite of a banana for lunch, and about three spaghetti noodles for dinner. And she kept everything down, these are amazing steps forward. We had a very special visitor from Abby her speech therapist from the first go around of surgeries, she was working today so she was able to see us and that was exciting. She was so sweet to stop by and visit and she brought me coffee, that makes her double sweet. Through the past 7 ½ years we have met so many nurses, doctors, nurse practitioners, social workers, Child life specialist and the list goes on. All of them become our family and it becomes very sad when they move onto a new job. But its so nice when there are a few of them that have stuck around the entire process.
Ellie was really pooped this morning and I told her that Grandpa Steve, Aunt Kelli, and Grandma where going to visit and she said “Oh, I better get some rest for there visit.” She was excited and couldn’t wait for the visit.
Our dear family friend Janae, stopped by after her shift at a different hospital and was unable to see us because of the visitor policies but she dropped a special gift off for Ellie. Ellie also got a very special gift from one of her best friends Daleigh (they have known each other since preschool and became really close starting in 1st Grade once Ellie was diagnosed). Daleigh got a bunch of Ellie’s friends together and created a quilt for her. Each friend created a different square with photos and drawing. Ellie just kept on saying how amazing this was. She has been so blessed by so many thoughtful people. Besides the visits and special gifts. Ellie facetimed with her Great Grandma George, Papa, her cousin Kolton, her cousin Maddie, and with a group of her girlfriends who really lifted her spirits. Ellie said at the end of the night to me “why is it so exhausting to facetime.” How do you answer that?
Ellie also walked for a bit and did some facial therapy. She is determined to gain strength in her face and working hard for it. She did vocal warmups to help with strength and even sang. This is just day one I’m pretty confident that its just going to get better and better as time goes. Doctors are pretty sure she will regain function of her face with therapy but its going to take weeks and hard work. It’s driving Ellie crazy, she is drinking from a sippy cup and drooling when she talks. She also has lost coordination and strength in her left side of her body. She can’t hold something with her left side. This is why I say it’s a difficult day. Reality of what the next weeks are going to bring are sinking in. It also has come to light that Ellie isn’t getting out of here in the estimate time frame they gave us. She is really moving slow as far as recovery allot of that has to do with the fact that she lost a day to nausea. This is much more of a struggle as Ellie knows what she should be capable and is not. We just keep on trucking forward and I am physically and mentally exhausted. Ellie doesn’t want me to leave her side except she has let me go for lunch each day as there has been family visiting with her to give me a break. But we had a discussion of maybe her Dad (Dave) spending the night on Saturday so I can go home and sleep for one night and she said well you really need to stay here with Dad because he doesn’t know how to take care of me and all the stuff I need to do. Needless to say, that plan is a bust.
She is putting on a brave face for others, but is struggling as this is no cake walk.
We are going to try and get a nap in before our next visit from the nurses. We are onto every two hour check and then they come in for medications so hopefully we can get a little more sleep tonight.
I added a photo of Ellie the first go around with her speech therapist and then again from today. Also one of her dad from the first go around and then yesterday.
A mother with a battle ahead of her.