Saturday, March 21, 2009

So... what happened again????

I know with all the yapping my sister Malina and I (Mia) do, sorry we can't help it:), things may still seem confusing.

How about stating only the facts-

March 19, 2008- Darleen got into a car accident. Its serious. She is air-lifted to Lakeland Regional Medical Center.

March 20, 2008- Darleen is in a coma due to swelling in the brain.

March 21, 2008- Brain Surgery- to remove part of her skull because swelling becomes more severe. Surgery went well. Doctor says," Now we wait. She has a chance at life and now we wait to see how long she needs to heal."
Prognosis: Severe Traumatic Brain Injury in a coma

July 2008- Its 4 months into recovery now. Darleen is moved from ICU to the Special Care Unit. Still "sleeping".

November 2008- Its 8 months into recovery. Darleen was discharged from the hospital and now moved to a pediatrics care facility in Orlando. And she is starting to smile more. Subtle changes. She's coming...

March 2009- Its 12 months into recovery. She can breath on her own, she can smile, she can look straight into your eyes, she can roll her eyes if you bug her (still Darleen), she can yawn, she can swallow, she can cough, she can occasionally move her right arm, she can turn her head to the left, she can!!!!!

I hope this makes the situation we are in a little bit more clear for all of you who are all so supportive. Thank you really!! Thank you for following our story!!!
- Mia

Friday, March 20, 2009

Veggi-tale

Haha - okay! My sister and I are doing about 3 posts a day! You know we sure have a mouthful, so you better get your reading glasses on and catch up!
-Malina

#1 - this morning I came on to see what my older sis, Mia, posted and stumbled upon 14 followers! It's BADASS to see that we already have followers, let alone 14! Thanks to all of you.

#2 - I just wanted to recognize the people who did not eat meat yesterday. Especially because my sister and I were getting phone calls out the wazoo about "what do we eat", "can we eat eggs", "can we eat fish" ETC? Hahaha - I know both of our responses were - eat tofu & a bean burrito LOL. And awesome for the few of you that are extending this over the weekend. All the people we know, don't know, and missed on the list - Thanks! I know that for some of you this was painful. =)

Thanks from the whole Li family- Mom, Dad, Joey, Mia, Malina, Darleen, & David

Bruce, Billy L, Lily, Annie, Sally, Billy P, Emily, Kevin, Hiumathy, Baotram, Sandy & company, Brenda K, Brenda M, Kett, Lynda, June, Kent, Helen, Jason, Sanica, Oubie, Sonny, Malissa, James, Jackie & Jackie, Samantha, Kathy, Cindy, Dale, Loi, Kathy.

Sophie & Nana - for eating only SOY products =).

Darleen's Team girls - Crystal, Denise, Brianna, & Nikki - bonus for passing out the purple ribbons!

My mom texted me last night - "Good job hoy thanks love mom" - and I think that she is really talking about y'all and not me.

Charity Events 2008


Let me also give you a run down of what has happened last year on the charity side...
Our friends and our family has had many charity events in different cities. Thanks to all the contributors, supporters, and great friends that have made these charity events possible and $$$. Hopefully more to come and hope you had fun at these events!


You can go to the link on the left to Helen Su's myspace and she has a "Donate" button on her wesbite. She is one of our close family friends and we appreciate all that she has done for us.
- Malina

7/13/08 - Jackie's Wine & Cheese Party in Orlando, Florida.


8/31/08 - Helen Su's Bikini Carwash in San Diego, California.


9/13/08 - Helen Su's Birthday Bash in Hollywood, California.


9/26/08 - Pelletier House Poker Tournament in Denver, Colorado.


9/27/08 - Family Affair : The Darleen Li Fund in Denver, Colorado.
Cocktails @ 8PM.



10/4/08 Vince & Anna's Poker Tournament in Denver, Colorado
(Our cousins that took time out of their hectic day with their new baby Ella for this event!)



10/11/08 - Step It Up with KABA MODERN, HELEN SU & JENNY CHU in Dallas, Texas.

Thursday, March 19, 2009

Recovery Overview - Aftermath

So now it's been a year since the accident and she is still recovering. I want everyone to understand that when someone is in a coma, it is not like the movies where people look like they're blissfully sleeping and just happen to wake up from their somber one sunny day. It is not like that at all! Here is a helpful link to get into more of the "scientific" depths of traumatic brain injury http://www.biausa.org/.
She slowly is becoming more and more aware. And she smiles!!!

Below is an email sent out in September- 6 Months into recovery. Keep in mind, I was still frustrated- hence not on a spiritual path but just plain working out of love. Yes, I'm the intense sappy one hahaha:

It has taken me this long to reach this point, to find the courage and face our obstacle.

Yesterday was my second support group meeting. I was inspired when I met other people that have been through what we are currently going through.
I know it's hard when we are faced with circumstances that are not black and white. We walk around with the feeling of mourning yet our sister is very ALIVE.
Why am I Angry? Sad? Stressed? Happy? Guilty? Confused?

I believe it is time we no longer wait for the professionals to give us answers. What I learned yesterday is that TBI (Traumatic Brain Injury) is such a new injury that most professional care providers are limited to what they themselves know. Credible research was developed in 1982. Yet, just like anything that has just started there will be misinterpreted material.

Advancement in medical technology has helped save Soy's life. Now what? Where do we go from that? Is there a guide? I don't ask about her physical difficulties because my biggest concern is her brain recovering. But that does not mean I don't think about it. What about her joints locking up because she has been bed ridden for SIX months? And her muscles...she worked so hard for nice legs.

Well yes, no and I don't know, were the answers I got from the medical team. What we learned is that this is a physical injury as much as a mental and emotional injury. And guess what, another survivor had the same problem with her joints and she got BOTOX injections to her joints to help lubricate them and it worked. Now she can wave HI!! Thank god for BOTOX.

Right now Soy is a level 3 on the Rancho Scale for comas. The doctors say she MAY never wake up but they are not sure (OK WTF!! what kind of answer is that??!!! I swear I would have punched him, but don't hurt the messenger. And further more I can't afford to get sued cause I'M SAVING MY MONEY TO PAY FOR MY SISTER'S MEDICAL NEEDS) Yet they also said she would not make it. It has been SIX months and she is getting healthier.

I believe Soy will wake up. Due to the subtleties we see in her day by day. First it started with eye opening, now it's turning her head towards the direction the voice is coming from. Sometimes smiling when dad makes a goof out of himself and tries to joke in English. Or even the occasional squeeze my hand Soy. And guess what she SQUEEZED my hand.

As they said in the support group.......the beginning of recovery for the family and the patient is when you realize you will not be able to go back to what and who she was. But you can build on who she has become. We do know that there are great rehabilitation centers in the United States. And yes it will be expensive. What do we do- we don't have adequate healthcare. Yet, my sister, just like any human being deserves the best!! That is the purpose of fundraising. And it doesn't end there. All the survivors that we have met are continuing there rehabilitation through resources that they and their families have searched for themselves. Even things that medical professionals did not know about. This is not a text book injury. It is a person injury. And as we know it Soy is SO stubborn, she doesn't give up. No Matter What!!!

Miracles do happen.
Like the lady that got her skull and first layer of membrane from her brain completely scraped off. She has 20% brain damage and completely ZERO frontal lobe activity in her brain. I may not understand what all that means, but I do understand enough that the results shocked me. The doctors said she will be blind on her right side, completely paralyzed on her left side and MAY never wake up. But instead she woke up, got married, had a baby, director of her HOA, sells insurance and maintains a "normal" life, with A LOT of extra work for the past 12 years. She says, "It's simply because IT'S WORTH IT".

Or the man who WAS in a coma for NINETEEN YEARS........guess what it stopped at 19 because he WOKE UP.

There was one thing all along though...........the one thing all successful survivors have in common is this...A RELENTLESS SUPPORT GROUP WITH COURAGE! THE AUDACITY TO THINK BEYOND WHAT THEY WERE TOLD! A FAMILY THAT CONSISTED MORE THAN JUST BLOOD! AND LOVE BEYOND REALITY! WE ARE HER ONLY ADVOCATES.

I am here. I know the strength that I have. I know this time; I will need more than just me. I know you have it in you to join me. This may not be what we had pictured but this is our life. I am ready to embrace it. We are going to make it happen.

I will give up my desires and I pray for strength.
Love- Mia

More Email Communications

EXTRA - After the car accident I flew out to Orlando, FL immediately on a one-way flight and slept and stayed in the Lakeland Regional Medical Center 24/7. My parents, sister Mia, sister's boyfriend Joey, and David took turns sleeping, running our store, and coming to the hospital. My little sister's boyfriend at the time, Miko and myself stayed at the hospital and made sure everything was running smoothly. The posts below are the other emails that were sent to the distribution lists as communications to our family and friends. This was the only way we could contact everyone all at the same time and we also did not have service to contact people while in the hospital. As I came back to Dallasl, Tx, where I live I tried to keep in contact with everyone remotely. I will post more posts on her recovery up to date...


Other Communications:
(March 28, 2008 @ 1:25PM)
Hello Everyone,

Thank you everyone for all your support! Darleen is doing better and better everyday! I know everyone has been antsy to hear from us, but no news is still good news. =) My mom says that she can really tell she is doing better because of the vibrant red color on my sister's lips. =) Although, she is currently still sedated and resting, she is recuperating steadily and successfully. Not only is she very strong, but the strength of our friends and family has helped this process to run smoothly. Please continue to be patient and do what all of you are doing because it's working!

* I apologize if I have missed anyone.
Sincerely,
Malina Li and our family


(April 9, 2008 @ 5:49 PM)
Hello All!

Quick update:
She is still stable and recovering. She is actually also starting to react a little more than before by minor movements! Although she is still in an induced coma, her classmates & friends have sent cards and we are reading them to her. Patience is the only thing that will let her heal at her own pace. We think that by reading to her it will help to encourage and give her strength. I can't thank all of you enough. =)
Thank you for all your patience!
Malina & Mia <3


(May 1, 2008 @ 10:51PM)
Good evening all,

She is still very stable. She is young, healthy, and strong!

Recently, her vitals were a little aggrevated for a couple of days, which lead to a surgery yesterday to help drain fluids and relieve pressure in her brain. Since then, her vitals signs are much better and her surgery was easily successful. The surgery has helped to relieve a lot of her pressure, so that's always a good thing. My family is very grateful for having friends and family like all of you.

We can't thank you enough for all your support. We know that we're in this for the long hall, but we're ready. And I know that all of you are too. I wish I could update everyone daily, but thanks so much for being patient and waiting. =)

Love,

Malina & fam

(June 27, 2008 @ 12:57PM)
Hello Everyone,

Finally an update, I know I have been extremely busy. Darleen is doing very well. She has been moved to a little less intensive floor, where she does not need to be monitored as closely or severly (which is GOOD!). Of course her vital signs are still stable and her brain & blood pressure has been very calm. She still has a small amount of sleeping medicine in her system, but she sometimes open her eyes when we enter the room. When she does open her eyes, it is very minor as if she is drowsy or half awake, but this is a very good sign that she is aware of her surroundings. I want everyone to understand that with her health being very calm, it will be easier for the doctors to take her off medication to wake her up so that she does not wake in a frantic. Because I know that it seems like it's been a long time and you are wondering why she still has coma medication.

She can also minorly focus her eyes and trail them. The doctors have said that this is a good sign of progression because in head trauma patients it is extremely difficult to trail your eyes back and forth. Our family has given her an iPod to listen to and this has also helped to keep her very calm because if you know Darleen - you know she loves music! =) If she could, I bet she would be belting out the songs. Mia is going to a Music Specialist to research the methods of musical therapy.

On another note, I would like to announce that we have been getting a lot of help from David's Band teacher - Angel Meroni, which is organizing a music fundraiser event for Darleen. And you know waht, our family has been so involved with taking care of her, that we didn't care about how much the cost would be. And Angel has helped us to recognize that medical bills and therapy will be expensive, she also knows first hand from her own life experience with similar medical treatments. This event will take place in a few months, but I would like to open the forum to any of our family and friends for any suggestions, ideas, networks, and advice. We are in the works of opening a non-profit organization account to honor the donors for Darleen. So far - our brainstorming ideas have come up with having Angel Meroni's band students play a music concert to raise money in a potluck style event. I know that a lot of you do not live in Florida, but this event is open to allll of the people who know & love Darleen because I know you are all fresh with ideas.
[*It would be awesome if you could make it though =)]

Our family wants to recognize one of Darleen's friends named Jackie. Her mother, Jackie, is holding a Wine & Cheese Party in Florida on Sunday July 13. It will be for her intimate friends to enjoy food and wine with donations going towards Darleen's health.

I know that this is a lot of information to take in all at once, but I know that all of you were waiting for me to write an update - so I think this was suitable =). PLEASE do not hesitate to ask me any questions, concerns, prayers, anything. I am very confident in picking all of our family and friends' brains because all of you are intelligent people and overflowing with ideas Hehe. Please GIVE ME YOUR SUGGESTIONS, anything will help.

(P.S: Of course, Mia has designated that I am in charge of the "artwork" for these events. If you have any pictures please send them to me - bc if not it will be collages of just Darleen and me Ha!)

Love,
Malina & Mia

No Meat Today

Because Darleen is a vegetarian and my sister Mia currently working on "finding her spiritual path" (ha) - we (and anyone who wants to join) will not be eating meat ALL day today as it marks the anniversary of the accident. Think of it as an extra day of lent. =)


It's only one day - C'mon!

Her friends Denise, Brianna, Crystal, and Nikki at Haines City High School are passing out purple ribbons today for awareness. They made black shirts that say "Darleen's Team" in silver writing. Great job, girls! You rock!


*** Note - an overview will be coming soon. It probably won't show to you til 3PM (it's post-marked, so it will be sequential). =)

-Malina

What Happened

INTRO - It has been a year now since Darleen's accident and I think that my family is finally ready to be a little more public as things have calmed down. This blog will be a place for our family to post updates, encouragements, prayers, wishes, and randomness about our sister Darleen and her recovery. I have been working on this behind the scenes for a while before this has gone live on March 19th, 2009. I, being a very private and personal person, had to suck it up and overcome my fears because I got appointed by my family to inform all our friends and family of our situation hehe. I have now realized that I was also the perfect person to be the informant as I have kept things positive and honest =). Please see the initial email below to see the "What Happened" that was distributed to our close family & friends when the accident happened.
- Malina

WHAT HAPPENED:
(March 23, 2008 @ 5:30PM)
Everyone,

This communication is to inform our friends and family (if you do not already know) that my little sister Darleen has gotten into a serious car accident. Please understand that this is a hard time for our family and repeating this story over and over is difficult, therefore we will be communicating updates via email at this time.

On Wednesday, March 19 Darleen was driving and had a collision with a school bus. Currently, further details of the collision is still pending and we are mainly focusing on her health and recovery. When further details are release, we will be able to inform you as they come. She is currently in ICU and stable, but she has suffered some head trauma and her recovery process may be slow. For her recovery, the doctors are keeping her sedated to prevent her body from overworking herself to naturally heal at her own pace. She has had two successful surgeries to help aid with the healing process. She is very strong and resilient and she is getting better day by day.

Our family has high hopes and pray for a healthy recovery. We thank and appreciate all of your love and support during this difficult time. We ask that you please keep her in your thoughts and prayers. Our family has remained very positive, and this has been a contributing factor to her day to day progression. Please remain positive with us, and we thank all of you so much for your thoughts, prayers, emails, texts, calls, cards, flowers, and all of that!

* I apologize if I have missed anyone, please feel free to forward this information.

Sincerely,
Malina Li and our family