Hey everyone. I don't have to much new to report this evening except that Ellie's primary surgeon has ordered for her paralytic to be cut in half. This was done about 2 hours ago. It should not mean a huge change for Ellie but it will maybe allow her to open her eyes, wiggle her hands and feet and move her mouth. So, we will get to see her eyes open again, maybe. I have missed that so much and it was only 24 hours. We were getting use to Ellie being awake and it's just down right miserable to be back at this position again. I am nervous about them changing the paralytic medicine again so soon. But then, I am nervous about everything. We were in such a good place last week. It was almost like Ellie wasn't that sick. Matt and I still had it in the back of our minds though that Ellie might not tolerate being awake again. The reason, her airway is still not corrected. That's the whole reason she went on the paralytic to begin with. I wondered why they were going to do it then when they still had not corrected her airway issue. And now here we are again facing the same scenario. The only other thing we can think right now is that Dr. Lim thinks this might have been just a fluke thing. He seems to think she is at a stable place again. I know Ellie cannot be on a paralytic the rest of her life. It's no way to live right now. As a parent, it breaks my heart to see her this way. Matt and I both just want to take this pain away from her.
I really don't know what else to say right now. Matt and I are both tired and exhausted. I know I have said it before but we just feel so helpless as parents. I just want to make her better. I will admit yesterday was the day I was angry. I was angry that my daughter was sick. I was angry that we are almost 10 weeks in to this and still I feel that nothing has been done to help my daughter to get home and they don't know if or when something might get done. I was mad that we are having to go through yet again another trial. I don't understand it. I might not ever. And when I do get my questions answered, it's not going to matter. At that point, I will be in eternity with all of my precious family that have gone before me. What a sweet thought.
Matt and I are prepared to do whatever we can to help Ellie. We are prepared to fight for her no matter what. If something can be done, lets get Ellie to the point it can be done and get it done. I have told a lot of people this, that we didn't get to fight for Maddy. God already decided that for us, but if He gives us the opportunity to fight, then we will fight. Ellie is worth all the fighting in the world. And that's what, no matter how tired or frazzled we are, we will continue to do. What parent wouldn't?
We will keep you guys posted as best we can. Sorry again for the long day between yesterday and today in updates. We were all tired and just needed to step back and rest. Thank you all for your continued prayers for Ellie. She is so lucky. We are to. Ellie is teaching us ALL so much.
Love,
Ellie's Mommy
