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