Phase One - Eat, Sleep, Function

Welcome back returning readers and welcome to any new visitors! Updates? Well, where to begin...there is so much, and at the same time, things move so slow it wants to break your patience (and sanity at times).

I am very happy to be able to say that she has mastered "swallowing".  When Leela eats, she can chew it and swallow on her own. And this means she can have liquids. This is a big step up from the tube, to only soft things like broth and applesauce, to now being able to eat things like spaghetti (limited). A big difference from where she started!

The doctors feel good about this. And I have to mention, the doctors are very happy overall with the progress, and most important, the POTENTIAL Leela has shown us. I mean, when I say she is not done, I mean...NOT DONE. You can see it in her eyes, she wants it. What exactly she wants, she does not know I can assure you, but it's almost like she knows something is missing. Like when she discovered she actually does have a right leg. She became confused by it. That work is ongoing.  Intense occupational therapy will be needed for these issues. 

Leela has also been working to speak. She is confused here too because she almost seems to know that words should be coming out, but they rarely can. What she suffers from here are severe cases of both Apraxia and Aphasia, The therapy that will be needed is intense speech therapy. After the preparing for, and stressing at the thought of, transferring her home in about a month and a half, I now juggle the thoughts of moving into the Ronald McDonald house on a more permanent basis (not the day-by-day I do now). 

My youngest started school last week and my husband had to go with her. Our home is over two hours away from the hospital and they simply had to go. Yes, you might want to know, there are hospitals closer to our home but should you ever experience a life-threatening trauma and the therapy that follows, you too will learn that not all hospitals are equipped to handle all specialties. For me and our special girl, the hospital we need is Children's in Aurora, Colorado (Twitter: https://twitter.com/childrenscolo).

Some of our visitors have had to get back to things too. My sister, my brother, more family and friends...some of them have kids in school too, and not in Aurora. It's a lonely place for a mama and her girl when your hope of making it through every day gets harder with time, and your ability to even "dare" to think of the future is blocked by an anxiety I cannot explain. I miss my family when they are back at home, I miss my little girl that is right in front of me.

The GoFundMe (https://www.gofundme.com/leelacan) has been so supportive. I think of all of you out there. I know you are busy and have kids and families, friends and lives of your own. The fact that you take the time to be here with me, reading and supporting, means more to me than I can even say.

So you know what she is up to, we have therapy at different times in the day. Leela spends time in rooms with other children that are ill. TV amuses her and extra sleep and naps are needed. Part of her is curious, part of her is no more than a toddler. But every day is a new day and even the slightest sliver of progress is hope and movement, all in the right direction. The goal is to keep Leela moving forward and provide her the tools to do it! 

And so, thank you again for the support and until next time friends.

I'm sending love back,

- Julie (mom)

Please help spread the word, #leelacan - share the blog, Google+, Twitter, Facebook and Instagram...let's keep this girl going! 

Special note:

I couldn't have a bigger thank you for Neurosurgeon Dr. Handler (me and the doctor, picture to the left) who saved the day on June 26th, cleaning up and fixing up this unexplainable injury. 

This picture was taken the day it all happened. I had so much hope in my heart that day and am holding onto it still. I hope and pray every single day my sweet girl can keep making progress.