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!
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.
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.
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!)
(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.
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)
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
