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