You're Invited: To Day 365 on June 26!

This is Leela, going to Prom in 2017. She was taken by a very nice boy from Church.

So thankful to him for helping her and giving her the chance to be there! 

She felt beautiful, included and hopeful.

What I would love you to know!

I am so proud of my girl. I want to give you a quick update on Leela's wins! When she came home last year, she couldn't make it through our front door and now (with the help of her leg equipment) can walk on her own. She can only put "some" pressure on her right foot, but she is at least moving more independently, and her gait pattern is getting better overall! 

With the help of her arm equipment, Leela is somewhat capable of using her right hand to assist in eating, but only with certain foods. It's a slow process, but she's working on it. She is also happy she can eat more than soups and soft foods which is where she started. 

Another thing that makes Leela happy is that she can get dressed, for the most part, on her own. It gets a little embarrassing when you can't eat, walk or dress yourself. (And when you're a teenager, getting dressed by yourself is a big win!) She does need help in the shower but we had the home renovations and the bars and things really helped her learn, and it all still helps her today! Gaining balance and the ability to move was "step one" in that area. She is also working on using her right arm/hand so she can wash her own hair, which she really wants to do! 

When we did the home renovations, we also had extra bars installed on the stairs, even though in the shape she was in, it was hard to imagine her ever taking on stairs of any kind! But sure enough, the girl worked hard on balance and strength and CAN actually make it up and down! She wears out quickly though and her body can only take the challenge of stairs when her energy is high. 

It is very hard for her to form words (and cannot type at all) but something that makes her happy is that she can voice-to-text little social media messages and things to her friends and family (even if it takes her 100 times to get it right!) 

Leela has gained more movement in her arm. She is able to lift from her shoulder and put it back down. That is HUGE improvement. She’s also gaining the ability to purposely close her hand (something you and I never think about). Another great piece of news is that she is testing on average in her age group for "visual" communication and is able to process certain things with her visual supports.

This girl is a gem. For her to have upbeat spirits shows us all what "will" will do. Her depression from realizing who she was and who she is today has been very difficult but every day is a new day, and on we go!

- Julie (mom) 

Julie & Leela

LEELA'S life today and her needs:

Leela's life:

music therapy (1x/week)
counseling (2x/week)
physical therapy (2x/week) 
occupational therapy (3x/week)
speech therapy (3x/week)
home therapy (daily)
aquatic therapy (1x/week)
yoga (1x/week)
(and our visits to Denver for testing) (1x/week)
---------
trying to hang out with friends (that still are available to her)
movies at home
social media
family


(What if this was your week? Imagine...)

Leela's reality:

Academically, Leela knows now she is not at all where she was. It’s very emotionally and mentally exhausting for her. For her, it is now a massive change to her own reality. To know you were taking college courses and now you are at a FIRST-GRADE reading ability and comprehension, is inconceivable to me. Leela is not in first grade, she is 16 years old.

She still can’t put letters together to make words and numbers are still an issue. Time, and anything other than single digits, is where you will lose her. Trying to speak without any visual support is a very big challenge overall. We are still praying and hoping that this will improve for her because living a life where you can't comprehend the simplest of things, much less communicate, can be very hard. 

Her hand is still not getting any finger-opening movement. That will be the last thing to come back and although we are now a year into recovery, we are not giving up.

We also found out that Leela has a form of colitis. That was not fun. Thankfully though an emergency room trip found it. It is very painful. We have tried decreasing processed foods to help the symptoms, let's hope it works.

As for me (mom), I'm still exhausted mentally and emotionally. I wish I could say it gets easier, but it has not. I still become a mess watching Leela have any struggles. I can tell YOU though that we have appreciated every penny donated to Leela’s recovery we have received. It all goes to her medical account and without it, that list of things above would not be possible. I can't even imagine where the poor girl would be without them. 

There’s a lot that insurance does not cover. Certain therapies like music therapy, some of the medical equipment, the upgrades to medical equipment which she needs in order to progress, classes to help relearn everyday activities, gas to get everywhere (and when you travel across town five days a week, as well as from here to Denver, that adds up quick!). 

HOPES: We are looking to get the Saebo Flex and Glove to help with her finger movement. The doctors say will help open her right hand and the individual fingers, and potentially help re-establish brain patterns (which is absolutely necessary!). The FitMi is also being looked at to help her get her muscles back on track. Getting Leela a tutor to help her re-learn reading is also a big one. It will help her with comprehension, math, etc., and has also been recommended by her doctors. She made a great leap just learning what school and learning even was and now she needs to relearn her education as if she were in elementary school.

THESE THINGS ALL HELP WITH HER DEPRESSION! It helps her feel and know her chances of still working on things and getting further along. Because of all of this and our chance to hopefully keep going, she shares her quote down below.

AND, one last update. Just two weeks ago, we all had another scare. The SAME thing was happening. Her head hurt, it became unbearable, she was screaming and then lost consciousness and movement. After two ambulance trips and finally making it to Denver, we had MRI's, brain monitoring (and the list goes on), and a team of neurologists. They did not find the cause, which is extremely scary and frustrating. 

Will it happen again? Are we done with strokes, brain bleeds, and brain damage? Is my little girl dissolving little by little? Will we EVER be able to financially support this? :( 

She has lost peripheral vision on her right side from that last event. Doctors are fairly certain it will not come back. So many questions and fears. She did make it home though and so we continue.

Onward.

What LEELA wants you to know:

"I'm a fighter, I am strong, I'll never quit!"

(Yes, these are HER words!)

- Leela Serene, 2017

Thank you for taking the time to read this update! Send any love you can and if you are able to help, know how thankful we are for the assistance. 

With the right equipment (that has real and trusted potential) I'd love to see Leela improve as much as she can so that she can work towards a LIFE!!! She could not possibly stress the WANT for it any more than she does. She wants to do MORE with herself and her life.

And I can tell you that this girl works hard and is determined to work anything made available to her. PLEASE KNOW THAT!

Also know that we are so grateful for the help in the beginning, now and during our long journey. And remember, Leela is a part of these blog updates and will read this and your comments, so feel free to write her and send your support if it suits you! 

- Julie (mom)

Ways to be involved:

If you'd like to donate: gofundme - LeelaCAN!
If you'd like a Team Leela t-shirt, message Julie through this post!

#teamleela
#leelacan

Leela's Journey - A Guest Post

Welcome to 2017 and welcome to this guest post!

Thank you so much for taking the time to read this. Your thoughts, prayers and donations give Leela so much support. And like Julie always tells you, Leela will read this, and I am happy you are too.

So, hello! I am Christina, Leela’s Auntie and Julie’s sis, and I am so happy to have the opportunity to be a guest on the blog!

I have been with Julie on her Leela journey from the very beginning out here in Colorado, and they have been quite the team. For a while, they lived by me in Denver (I loved running in the park by her apartment!) and after that, Julie moved them into a loft downtown.

When Julie's family expanded they ended up living one door down from me in row of townhomes that hold many great memories for us. I always loved that little Leela could just come over whenever she wanted and her, Lara and I spent some great time together!

Over the years

We spent time cooking or baking, movie nights, dancing at sleepovers, drives in the Jeep and just living life.

She started taking dance classes at the same studio Lara was at. It was great to see the girls sharing an interest and I can’t tell you how much Leela loved those classes! She was always so proud of her "new moves" and I liked watching her get all dolled up in the costumes. She just adored ballet (well, all of it really) and it was very fun to watch.

As she grew, and as she learned more about life and what was out there waiting for her, her dreams got bigger and her goals were growing. 

She went on to play soccer in middle school. She was part of the biggest soccer league in all of Arvada and every Saturday morning, she was out there running her tail off! She became a cheerleader in high school, and even played mascot a few times. Mascot you ask? Yep! Cause that was Leela, up for anything. And boy, her moves out-did any I'd ever seen in a mascot; she was fabulous! Leela was definitely a girl in motion!

During one of Leela's visits to see me (last summer) she was telling me about her ideas for after high school. (she was always looking forward and to the future) College of course, and she was interested in being an Anesthesiologist. Who knew that not long after that, Leela would need one herself.  

Time passes

You know, I've seen the posts of encouragement and the positive thoughts on how Leela is doing. I love seeing that! It means so much to Julie, Leela and the family. It also makes me happy when I see that support out there for my sweet niece, a girl I've known closely her whole life.

From the pictures though and the posts of the good days, there are things missing that you can't see. As a supporter, I want to share with you what is happening now.

So, let's jump to this last Thanksgiving. It was awesome that Julie and the family made the drive back up to Arvada to spend the day with us (me, Lara, Scott and his family), it's a 2 hour drive!

Leela looked great! (just a little tired) I thought back to Leela's goals for driving, classes and college. It pulled on my heart, and it stung. But it made me even more sad when she was telling me how she feels now. (putting together the pieces of what she could get out)

In her own words, she told me how she remembers my Jeep and how fun it was. She said she also wishes it could still seem fun, but it doesn't anymore. She told me it makes her think of driving and that it scares her now. Even my Jeep just sitting there scared her! She told me how sad and frustrated she was that she can't drive, and wonders if she ever will again. She remembers how she had her permit and that she was excited back then. In the end, all she could say that day though was "Yea...", with a sad and longing look on her face as she pointed to my Jeep in the driveway.

She went on to tell me how terrified she is when she goes to bed. She told me that "her problem" is still inside of her and could go again at any time. "If she sleeps, that means bad things can happen and it could come back." Can you imagine that? I never thought of that until she told me and I can't get it out of my mind still. Poor thing was frustrated and could barely walk, to walk it all off.

Here we are today

I'm not saying these things to overlook progress or to be a downer; I say these things for Leela. She cannot tell you herself and by looking at her, you may not know there are still any real struggles at all. But we should not forget the severity of what happened, or look away because in the pictures "she looks good". The situation is still very fragile. Leela is fragile, and she is hurting and still needs us.

I have learned that after something like this (if you make it), it seems the progress moves along pretty fast on the outside. First, she comes out of the coma and can breathe on her own, then she stands up, then she eats, and the progress continues. Physically, she gets put back together and soon she's even talking! I feel like I've witnessed a miracle on what the body can do by watching this little fighter.

I also have gained even more respect for "the fight". I know that no matter how good she looks on the outside, she is fighting every minute of every day to get her insides to work and connect too. For example, Leela still types in emojis for the most part because words still confuse her. Doing more than one task at a time or remember things like what pieces of clothing are what, are just not there.

This brings me to the therapy because I've also been learning a lot about what this "therapy" means. It's "the work" and it takes TIME. During this healing period, I know my sister is holding her breath to see what happens next. I know she still cries a lot, and hanging on to the hope of Leela regaining functionality and understanding seems to be a never-ending battle.

And on top of time, you need the money to be in therapy in the first place! If you didn't know, much of the therapies and equipment Leela needs is not covered by insurance. Nope...but really, is anything that easy? I wish it were. YOU have been so kind with your donations. Julie is telling me all the time how they just couldn't do what they are doing now without things like your donations and help from the state. It's been amazing. (And please know that the "gofundme-LeelaCAN!" is ongoing, if you are interested)

Leela's supporters - a reality?

I think as the obvious and physical things start to disappear so does the worry from others; the involvement, the concern. Everyone has lives of their own of course and people move on. Even her closer friends have their high school lives to live, and are separating from Leela. I'm sure for Leela, this is a lonely place at times but this is what happens. What bothers me sometimes though is what I hear all the time, "Leela seems fine!" people say. They talk as if she is done. I question if it's more of a relief to them to not have to be concerned any longer.

We all need to recognize that behind the posts, pictures and the smiles, there is a girl who is extremely tired and frustrated. There is a mother who is still trying to grasp a new reality that hit her in the face one June morning. But they keep moving forward; these two years (post incident) are crucial to Leela's recovery.

So...let us remember

Wounds can heal on the outside but Leela's journey as it continues now is very serious and difficult. Please remember her in your thoughts and prayers, and that she is out there fighting. Please continue to support her.

And as always, Thank YOU!!!

Without her new limb equipment, Leela's mobility would not get better (nor would she even have any in her affected limbs).

Your donations are making the difference! YOU are helping to make so many things possible, through your support. Thank you!!

In closing

Over the years I've seen Leela do many things and something happens to you when you really knew the person "before". Leela is a FIGHTER and she will continue to fight each and every day. She knows she is different and with more memories coming back over time, she realizes that even more. But her smile is still her smile and it lights up her face reminding us that her spirit is still inside of her. She wants to continue her fight to get better!

All in all, it's been absolutely incredible what positive things have happened since that very first day that Julie called me as she raced up to Denver that Sunday morning. I'm glad that "we" (Team Leela) are out there for her.

And this one's for you Leela!

"We all love you and know you CAN do it! Keep working hard every single day! We are all here. You are never alone and we all believe in you!"
- Love, Auntie







Ways to be involved:

If you'd like to donate: gofundme - LeelaCAN!
If you'd like a Team Leela t-shirt, message Julie through this post!

#teamleela
#leelacan

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.