Welcome Home!

Hello! Welcome to the latest update! (I say this as I welcome myself back as well since it’s been while since I’ve written).

Six weeks. That’s how long it’s been since I’ve been able to really connect with you all. So much has happened yet there is still so much fog that we live in. 

I’m fairly certain that most of you, or at least some of you, have seen that we left the hospital and brought Leela home since my last update. It’s been a bit crazy, that’s for sure.

Let’s start with the hospital discharge. Since Leela could not really comprehend that she had a life outside the hospital and we all practically lived there, our last day was an emotional one. Leela knew she was doing better, but what did that mean? She knew she accomplished many things, but what were they? What did she have to compare them to? Going home is a great thing and for most, it would be. But what if you can’t comprehend what that means? Would you want to leave what is familiar and safe to you? Leela was unsure, and a little bit scared. 

As her parent, I didn't want anything to go wrong. I'm mom, and the one she is looking to, to trust this move. For her, it was leaving all she knew to head into the unknown.

People became like family. We had a going home party. It was an amazing and emotional time.

Leela's surgeon was amazing and with his careful attendance to the tragedy that was brought to him that day in June, Leela is able to stand next to him with a big THANK YOU. 

Although she may not understand it all, she feels accomplished and knows she has made major leaps. Her life existed in her hospital room for months. I remember how her being able to walk to the bathroom and change the TV channels were BIG DAYS! :)

Leela is one amazing girl though and has done many things since being there. And as you can see, her "Leela attitude" still lives! The girl has a hip side to her yet! :) 

Since coming home we, of course, have had many ups and downs and that is expected. What one cannot expect or know, is how impactful each milestone or bump in the road will be. Emotions run high one minute and then there is a crushing blow the next.

Leela could not understand so much of what should be familiar, yet there were some curiosities and understandings we are all too grateful for (i.e. having friends, her room, that she had a home life, that she went to school) 

Leela does not have full use her right leg and came home unable to move her right arm at all. If you remember, she also came home with quite the headache after she was fresh out of surgery right before her release.

In the last bit, she has learned to move about the house in a limited way with a desire to be independent that is incredible. Like we all knew from the beginning, this girl WANTS IT! We got some renovations done in the house that have been very helpful. She is learning to walk up the stairs (with a brace) and find her way in and out of the shower (with bars and help).

Leela also dove into therapy right away. Her schedule now includes 10 sessions a week. What seems easy to me, exhausts the poor girl within hours, even the smallest thing. But her determination is relentless and she works hard every time, every day to find her way back.

We have introduced school back into the mix. Her high school accepted her into their special ed program where she attends for three hours a day, three times per week. Not only is this a lot for her physically with her limited stamina, it takes great strength mentally for her to want to do it. She proves herself every single hour, every single day, and that is great to see.

We all do things like go to work, keep appointments and try to stay organized and we are driven by our understanding of it all and our desire for the outcome and results. But what if that understanding didn't exist for you? Would you be as rigid as you are now? Where would your drive come from to do anything at all? 

Leela does not know exactly what it all means but I can tell you, it’s her spirit. She may not know exactly why she is working so hard but she knows there is more, she can feel it, and she wants it. 

I can tell you that as her mommy, it's a win just for Leela to understand there is life and purpose beyond sippy cups and naptime. But there is still more for her. Leela was not one to give up before this, and it doesn't appear she is going to give up anytime soon now either.

Well then, what exactly does Leela know then? Leela knows now she is home. She is remembering small things every day. But if you ask her to go forward and then take a left, she walks a step and realizes she doesn’t know what you mean. She is learning more words as she hears them and as they come back to her, but her main communication is through images and imojis.

Physical progress is underway. The people in physical therapy have noticed that her range of motion in her foot is getting slightly better and this is a great thing. In Occupational Therapy they have worked very hard already to get her arm to have some sort of movement. I’d say, she’s working on it great! Check out the video and see what she can do!

Although she can't use her arm in any sort of productive way quite yet, the fact that her mind knows her arm is even there, is major progress. :)

What’s the most challenging therapy at the moment? Speech therapy. Leela can say words, much like a small child asking for milk or reacting to something happy or sad but her actually “talking” and comprehending is where the focus is. This will need a lot of attention. 

Her speech therapists have had great things to say about her progress so far and I’m so grateful for this. There are two therapies; one works on language through words and the other works on language through a device. The device is a great addition to things because in the event (most times) she cannot get the words out, she can communicate through the device. This helps her participate and express what she needs, and it also helps us to understand her level of comprehension. 

In school, in the special ed program, she has her own para (which is a teacher's aid, dedicated just to Leela) who works with her on different things. They work on numbers, letter recognition and sight words. As an added bonus she does get some therapy there too. I can’t tell you how happy Leela is to be able to be back at school, in any capacity. 

Before the incident Leela was social, she liked to be active and be in society. I am happy to see that is still a part of who she is. She has been able to see old friends and has even been a guest during cheerleading in a wheelchair. Very fun!

So then you might ask, what is going on behind the scenes of all of this? Well, after being home a bit now, it feels like we are finally settling into some sort of solid routine. As mom, I am a driver and her full provider. I help get her dressed and showered, and help her move about. I make sure she has what she needs, and I get her where she needs to be. I guess you could say it’s just like before, and by that I mean when she was a toddler. I say that and then think of all you moms out there with these same responsibilities for your young children, it’s just that for me, I do it with a broken heart.

We are so happy to see our kids progress, so proud inside that maybe we had something to do with their accomplishments. I AM happy for the progress each day and I'm happy I can help, but for me, I also fight the devastation that floods me every minute. There are so many "shoulds" and "what ifs" that want to taunt me. And the big one…WHY did this happen?

I know this stuff makes you stronger, however I’m fairly certain it takes about 10 years off your life as well. At least that’s how it feels these days. Some days are pretty good and others I simply break down. I suppose I can be reassured I still have emotion left at all after all of this. 

Really, the days are stressful, sad, happy and just plain exhausting all at the same time. Leela was a small adult and very independent before all of this. Now I’m back to helping her in the bathroom. I am not trying to complain to you all, I am just trying to express my reality and I’m not even sure how to explain how that feels really. I can say though, that after every long and wearing day, I can still lay down and think about how much this is all worth it. 

On a more positive note, there is something new! One opportunity that came our way is an option for medical equipment that can be very beneficial in helping Leela with her weak side (arm and leg). “Bioness" has helped many people with mobility problems and Leela’s response to a trial went extremely well. Click here if you want to find out more specifics around it. 

We are trying to get a grant for this as the cost is $12,600. My hope is that since she reacted to it so positively that we will be a good candidate for it. Should we have the chance to continue this, the equipment could help establish new neuron patterns that can send the right messages to her arm to help her move it. It can also help with her hand so that maybe someday she can hold a pen or pencil for example. 

I can tell you this…when Leela did the trial and realized the possibilities she was amazed. She was able to see her own movement while using Bioness and was in tears; tears of excitement and joy. She just couldn’t believe it! I wish you all could’ve been there to see the hope and happiness in her eyes. 



One more thing, do you see this picture? 

This was Leela in a happy "normal" time with her friends going to a school dance. 

I point this out because Leela sees these pictures too, and there are many. 

She gets sad and confused the more she sees and remembers because she also realizes that she is NOT like that right now. However, she also knows she is NOT done.

And so we go on, more updates to come! I hope to do them more often. You all have been so generous in your hearts and in the donations. 

THANK YOU! 

Her therapies and her progress would not be possible for the long-term situation we are in without your help. YOU have helped.

For those of you that would still like to participate, here are a few links to the opportunities open for donations:

Opportunity #1: GoFundme: https://www.gofundme.com/leelacan

Opportunity #2: Rodan + Fields Lash Boost (all sales go to Leela!)
contact: T4product@gmail.com 

 Learn more about the product here! https://tr.myrandf.com/

 Contact Tina for more information! email:T4product@gmail.com 

Opportunity #3: Team Leela T-shirts! 
contact: Find me on Facebook! https://www.facebook.com/julie.whelan.940

Okay, signing off for now. Please know, from me to you, and my family to yours, YOU make a difference and WE APPRECIATE YOU.

Until next time, sincerely, 
Julie (mom)

#TeamLeela, #Leelacan

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.

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.

Welcome to Leela's recovery road BACK! What is "back"? We don't know quite yet, but she's already made it through some amazing hurdles. After her cranial hemorrhage AND stroke, she found her way to breathing on her own...and after a stressful time waiting to find out if she could still make it at all, she made her way out of the PICU.  

Hello, I am Leela's mom, Julie. I was in shock that morning she woke up at a great birthday party sleep over, when the parents called to say Leela could not speak or stand. Then we had the emergency call, the flight to Aurora Children's and the words I will never forget, "Say your good-bye now, the odds of her making this flight are not good." 
I have thought to myself, had she been home, she might have slept in a bit and we may not be here with this at all today. Since the very moment I got the call, I've prayed that she might at least be able to look at me or know I was there by her side.
"It is most likely an AVM." (tangled vessels formed at birth) they thought. But they soon discovered that was not the case with Leela. "There is no explanation." the doctors say now. 

My sweet "Leela Serene", where is she now? Can she remember me, really? Does she feel safe? I just don't know for sure. My little A-student cheerleader is now someone who doesn't remember her life. 
This blog means a lot to me and will mean a lot to Leela. She will read this someday, she will see the support and the love from her family, friends and donors who follow her story.
I will post my updates here. I will post Leela's progress. Soon, I hope to have things from Leela herself to put here.
Thank you for taking the time to stop by. Please come back often, we will have much to share.
-Julie (mom)
Team Leela

First and foremost, 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. Let's see what happens when "it's not over" and only $$ are in the way.