Phase Two - Getting put back together and heading home!

Hello friends! Thank you for your visit to Leela's Recovery Road!!

You can see to the right that Leela is able to make it out of her room now, and with a smile on her face! 

Here she is getting some sister love from Cami, just down from her room in a sitting area.

Getting down the hall is a pretty big deal these days! The fact that she can, among other things, supports the latest update and that is that Leela is coming home, early than first thought. 

This is GREAT news that she can get back to the environment that will be the base of what happens next. She NEEDS to be challenged beyond hospital walls and so this is good. It is also difficult at the same time.  I am a bit nervous to leave our 24-hour doctor/nurse guidance though, I have to say.

I've been talking and visiting with many people over the time of this incident. We've talked about Leela and for those who were fortunate enough to come by, we have be able to talk in person. There are also the many of you that are following us here. Between all of us, there is one thing we ALL have in common...the desire for that moment of relief and that hope that we will all get the good news. It would be incredible to be able to take a sigh and not have to worry anymore and instead see a bright future that is clear of these issues. 

I know that the first thoughts that most often come to us are, "She is going home? She must be doing awesome!" but the truth and reality of it all are much different than that, something hard for me to explain.

In a twisty sort of way, there was a different kind of relief while at the hospital, surrounded by professionals who care and dedicate their time to these injuries. It makes you feel safe. Her surgeon does nothing but work on children with the hopes they will move on from him and live their lives full of opportunity.

Click here to see this video!!!

Because of this surgeon (picture and video to the right) as well as all of the other staff, Leela has made amazing progress. 

I watch them help her every day. They explain things to me (good or bad) and translate what it is she is going through. 

They have really helped keep my fears at a somewhat manageable level; it has helped to calm me at times when the thoughts of it all are just too overwhelming.

So, how is Leela doing? Progressing every day with a want that is powerful, I can assure you!

Here are a few a things...

She is trying to walk, yes WALK!!! And get around without a wheelchair. She is still eating very well. She is participating in physical and cognitive therapies. She can say "ya", "hold on", "yes" and "okay", things like that. She is recognizing people however she doesn't really know who they are or why she would know them. She has even gotten into a couple sibling tiffs, which for some reason, seemed comforting. :)

She is wearing some regular clothes although she doesn't like regular clothes. (Strange for me, seeings how those very items meant so much to her before) She doesn't really understand that hospital clothes are not a realistic thing to be wearing. We take her wheelchair outside, have gotten to sit out for lunch and things. I did try to take her out in the car but that did not go so well. 

So many great things!! With the good, I must tell you some of the other realities. She cannot say what she wants and cannot think like a 15-year-old. She cannot eat the same, move the same or interact with others very well. She cannot read, she cannot fully see. She cannot use her right leg very well and cannot use her right arm at all (the hope is that with good therapy, that will change). 

Point being, while the move home shows us great progress, it is also a time to start a new step in all of this that will be challenging both physically and mentally for Leela. I personally feel a great responsibility as there are no doctors or nurses coming home with us!  

Your donations. I need you all to know that it is your donations and care that are helping to make this move home possible. Possible in a way that means she can still keep working and that we can update our home to accommodate her, and provide for her what she needs. 

Without it, the painful truth is that Leela will be unable to gain any more mobility or cognitive functions. She will not be able to grow and move on to do normal things on her own. Walk without assistance, read books, have a conversation, enjoy a regular meal...

Right now, she is very aware that there is more and although she can't remember or know it all yet, she knows something is very wrong. I see her work hard every single day. Struggling to take a step, struggling to understand a flashcard and trying hard not to spill on herself when she eats the "big girl food".

Her ongoing care is imperative. For those of you still thinking of donating to Leela, I thank you ahead of time and for those that have, thank you again. And, believe me, this girl smiling for the camera THANKS YOU!! 

So you know, she just made it through another five-hour surgery yesterday! She will be a week into recovery when we leave. This is a positive surgery though where she got her head put back together. I know, and I apologize for being blunt, but so it is. 

They had to leave her head open for monitoring and possible incidents that required more brain surgery. 

Leela is put back together!

She was extremely aware that a piece of her was missing, and that her head and face were mis-shaped, and so this will be a good thing to get passed. 

This will also make Leela much safer as she works on trying to get around. I mean, can you imagine having a piece of your own head missing? And for this long?  I know, wow.

When we go home, there will be no doctors or nurses. I pray I can take their place. Her environment will be different to her. Will she remember her room? Will we even be able to get her to her room? I hope so. When her sister goes to school, will she remember what school is? For Leela, there will be special classes, as well as multiple trips a week back to Children's Hospital (which is nowhere near us). I just cleaned out her desk. She would not recognize or have the need for the new supplies and items in there now. It's those little things everywhere you turn around that really put the reality of all of this right in front of you.

Your help matters. I could not provide her all of this care, learning and therapy without the great donations. Even though we are going home, the #leelacan program still goes on. Expenses are, and will rise, to a level I can't appreciate yet. And it all starts before this month is over. I hold hope and patience close to my heart these days. 

Should we find ourselves unable to provide this care, the reality is that this shocking devastation could leave us with an immobile toddler. Blunt again...but there is no other way to put it, unfortunately. 

Being that most of us are "normal", we don't even notice how we do and say what we need and want to. It is a gift for us to move through it all so blissfully (while we take it for granted). For Leela, even though she cannot remember that feeling, she KNOWS she is incapable and different, and that leads to many bad days of frustration for her. She has thrown things, screamed, tried to move and then cried. Just because she cannot physically throw that tantrum in full form, the torment of it all is still happening to her in her head, and worsened because she can't fully understand it. 

She endures battles every day, like struggling to understand and she cannot communicate very well. She cannot get her words out, she doesn't know what they are. She cannot remember home, or riding in the car. She doesn't seem to know or like many things that should be familiar to her. Even if she knows something is there, she can't pull it out of her thoughts to know. For the most part, the poor girl is just plain frustrated. 

And for me (mom), I will be honest. I can tell you I still cry every single day and am a bit scared for the move. I went home last weekend to start to organize and purchase items that either need to be installed, or that require changes in our home. We are doing renovations this weekend. Of course, I will buy the special foods, have the comfy clothes and the remote and some games nearby. :) But for my almost 16-year-old I will also have straws, pillows, her favorite stuffed animals and my TV set to the Disney channel. So very different than the full on teenager, fashion fan, cheerleader, and studious girl that left here that night before the sleepover.

Some of you know Leela, some of you met her in the past. Thank you for honoring her now by being here.

Some of you have young kids of your own right now and are beaming with happiness at who they are and who they will become. Some of you might have kids Leela's age and are so very proud of what they have done so far. Thank you for thinking about my child too...she still has hopes and dreams that CAN be possible. 

The love for our children is so big; it's really your heart walking around with them every day. Even if you don't have kids, you are reading this and you are thinking about Leela and sending great energy. Thank you for considering her (and us) by reading this and doing what you can. 

You know, I've watched Leela grow and progress over 15 years and boy, we've done a lot. The latest big anticipation waiting out there was the big move to College in a couple of years. That is all different now. Today, I think to myself that this time when I bring Leela home from the hospital, it won't be an infant on my hip every time I go up and down the stairs like I did when she was born...I will have a 90-pound child to hold now instead. I am stepping into a commitment that I still can't quite comprehend but believe me, I am gearing up for it. She is my same sweet little girl and I am her mama and WE WILL DO THIS!

Leela wrote this, for YOU!!!

And so then off to this new phase we will go. In the blogs to come, I am hoping Leela can help contribute here and share with you more about how she is doing. 

Today, I share with you this image to the right. Just so you know, Leela see's this campaign and takes in what she can. Probably more than what she can tell me, or so it seems. She sees you out there with us. She WANTED to try to add one thing today. :) 

Trust me. Leela is still here! Leela can still think in her own head and I know that she still has thoughts about this and wants her chances in life and wants to make them possible again. 

This is her life. Your thoughts, prayers, and your very helpful donations help fuel her future.

I love you all. It gives me strength you are out there and with us on this journey. 

Also visit Leela's GoFundMe: https://www.gofundme.com/leelacan

Love, 

Julie (mom)

Please know we have a GoFundMe page so that we can raise the money to ensure Leela can continue the care that she needs to do what she CAN. You can also G+1, and share this on Twitter and/or Facebook, and anywhere you can with the hashtag #leelacan. Let's see what happens when "it's not over" and only $$ are in the way.