Monday, December 24, 2012

MERRY CHRISTMAS!!!




HAPPY BIRTHDAY JESUS 
& MERRY CHRISTMAS EVERYONE!!!

It's the season of miracles, so I thought I would share a big one with you all...

On 12/12/12, I stood up for the first time in SEVEN (7!!!) YEARS!!!! 

...And in Monterrey, MexicoThe birthplace of my miracle!

For the past year, I have kept a list. Not a 'bucket list' per say, but a list of things I want to accomplish, do and experience now that I have been given a new life.

Some things on my list are big, longer-term, future things, some are smaller goals of things that I can do now or in the near future, and some are just random, fun things I want to do just to say I did :)

But really, to me, they're all big things! Over this past year I have been blessed to be quickly crossing so many things off of my list, that I had to keep revising it and adding more! 

Up until 2 weeks ago, one of the bigger things still remained on my list and I was determined to have it crossed off by my 25th birthday. I just didn't know how to even attempt it without getting seriously hurt.

So, while I was down in Monterrey, I decided to take my chances and ask Dr. Cantu his thoughts.

The conversation went something like this-

"Hey, Dr. Cantu! Can I ask you something?"

"Oh no" (smiling) "Ok, sure."

"I want to try and stand up!"

---Long silence.--

"Well, What do you think...Can I???"

--Big deer-in-headlights stare.--

Followed by, "Well, Jessi, you know your bones are-"

"Fragile. I know. But I am ready!! I have been working so hard all year going  in the pool and I am a lot stronger now. I think I can do it."

--More silence. Dr. Cantu begins looking at his iphone and avoiding my eye-contact. (great....)--

"I really want to do this as a Christmas present for my grandma. She has prayed non stop for my miracle. She's 89 years old and she is losing her vision quickly.... I want her to see me stand, you know, while she still can..."

Well, That did it!

He looked up from his phone, smiling and shaking his head. And he finally gave in!

"Ok. Ok! You can try. BUT--this has to be done safely and under supervision. You haven't stood in years, so your brain needs to be taught. If I just let you stand here, now, you will get hurt."

Dr. Cantu said he would set up a time with Dr. Garza, a rehab physician at AVE for the very next day!

"We will see what he says. Dr. Garza will show you what to do and you will have to agree to do what he says and not push beyond that... Ok?"

"Yay! Agreed!Thank you!!!!!!!"

"...Oh, And please wear a Green Shirt tomorrow so I can take a picture standing with you!" :) 

For the rest of the day I was so excited. I probably said to my mom close to 1,000 times, "Can you believe I am going to stand tomorrow?! Mom, can you believe that?! And on 12/12/12!!" Poor mom, she's a saint. Really.

The next day mom and I went to the AVE Clinic, where I receive all of my treatments and met with Drs. Garza, Balli and Cantu (who was wearing one of the many green shirts we have gifted him :) 

Dr. Garza did a quick evaluation and decided that the best way for me to try and stand would be using parallel bars so that I could hold my weight with my arms, which he said were very strong! He told me that I could put as much pressure as I was comfortable with on my left leg when I stood up. I was told that for now, I should not put any weight at all on my weak right leg.

Dr. Cantu and Dr. Garza adjusted the parallel bars to the correct height while Dr. Balli wheeled me into position.


For the first try, all three of them would hold onto me and lift me up. If that went well, I could sit down, rest, and try again on my own!

As the doctors grabbed my arms, I couldn't contain my excitement. My hands starting sweating and shaking.

The overly-cautious part of me turned on and I decided I wanted to see someone else "test" out these bars for sturdiness before I put my full weight on them!

Dr. Cantu, as usual, stepped up to the task. When he didn't fall flat on his face, I felt safe to proceed!

 I looked up and said, "ok, I'm ready...but don't let me fall!"

They promised not to let go and up I went!!!




The first words out of my mouth when I stood up were " Look Mom!! Oh wow!! This is so cool!!"

I felt like I was flying! I thought I would get dizzy, but I was perfectly fine. It felt almost natural!


I then turned to my left and saw Dr. Cantu at eye-level for the first time!! He actually looks a lot different from up at that angle! Everything looked different seeing it vertically!


 "Hey Dr. Green Shirt, I am taller than you!!!"  Hahaha

I then was feeling very confident and said, "ok, you can all let go now!"

My crazy mom, who was dual taping and photographing every second of this, yelled out, " ummm no way Jess! Guys, don't you dare let go of her!"

"Are you really sure?" Dr. Cantu asked me.

"Yes!! I've got it! Let go!"

So they did!!

And I stood on my own for about 30 seconds!!


I sat down, rested, and stood up again 2 more times, until my legs were shaking too much to try again! We decided to call it a day.


It was one of the most fantastic days of my life! Every 'first' has been miraculous and so special, eating my first food, sitting up, swimming, etc, but standing definitely ranks very highly on that list! And I know walking one day will rank most high!

(I AM taller!)

Dr. Garza said right now I have about 5% of the strength needed in my legs to walk. 5% may not sound like a lot, but it actually is!

After spending 6 years in a bed, & 3 of those years completely paralyzed, unable to move my legs at all, I was told by so many doctors I would never have use of my legs back, ever. And look!! I am standing!!! That in itself is a miracle!

Christmas 2010 my dad and sister Michelle came to visit me in Monterrey and saw me sitting up in a recliner chair for the first time! The looks on their faces were of pure joy, shock and amazement.


Tonight, on the eve of Jesus' birth, I will stand using my walker in front of my entire family for the first time! I can't wait to see their reactions, especially my grandma's face!!


I know it sounds cliche, but we must not forget the reason for the season! All of the glory, honor and praise for every part of my recovery goes directly to the birthday boy, my healer, savior and redeemer, Jesus Christ! We believe in miracles because of His birth! We only live because of His life! May we love and adore Him like it's Christmas everyday!

Thank you to everyone who prayed this moment into being. Your prayers have been, and are still, being answered!

All I can say is look out 2013...  My list is recently revised again and God willing, I will soon be crossing off many more things! :)

Merry Christmas & Feliz Navidad to all!

Happy birthday Jesus!

In God's love,
Jessica

"Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the LORD will be your rear guard." Isaiah 58:8


****To post a comment click on "comments" below***



16 comments:

Rosemary & John said...

Dear Jessica,

Thank you Jesus! We could not have a better Christmas present, ever! You are truly a living miracle. God does have big plans for you. We are not sure whose grin.is wider....yours or Dr. Cantu. He is in awe of your progress, as we all are. Jessica, we are so proud of you and happy for you and all your family. I wish were in the roomto.ight with your grandma. Make sure she is sitting down when you stand up!!! God bless your Mom, your family and doctors and so many others for always believing in you and for praying for this moment. We wish you more and more moments like this one in the coming year. There are no limits Jessica, you will accomplish every one of your dreams!

Merry Christmas with all our love!!!

Rosemary & John

Rosemary & John said...

Dear Jessica,

Thank you Jesus! We could not have a better Christmas present, ever!

Jess, you are truly a living miracle. God does have big plans for you. We are not sure whose grin is wider....yours or Dr. Cantu? He is in awe of your progress, as we all are. Jessica, we are so proud of you and happy for you and all your family. I wish we were in the room tonight with your grandma. Make sure she is sitting down when you stand up!!! God bless your Mom, your family and doctors and so many others for always believing in you and for praying for this moment. We wish you more and more moments like this one in the coming year. There are no limits Jessica, you will accomplish every one of your dreams!

Merry Christmas with all our love!!!

Rosemary & John

Anonymous said...

OMGOMGOMGOMG!!!!!!!!!!!!! Jessica I am so happy for you and so proud of you for always believing and having faith and working so hard!!!!!!!!!!! It is incredible to see you standing up-- INCREDIBLE!!! I am thrilled for you and your wonderful family, and will let our rosary prayer group know the awesome news!!! God bless you on Christmas and ALWAYS!!!! Love, Angel xoxoxoxoxo

Anonymous said...

Praises to our wonderful Lord!!! THIS IS THE BEST Present EVER!! Joe and I are crying and squealing with delight for you and your HUGE and Extended Family!! As Dr. Greenshirt would say...another Baby Step for you and this time STEP is the Key Word!
Can you tell we are soooo excited we don't know how to say it!
xoxo Merry Christmas Jesus & Jessica! Peace be with all those that aided you in your recovery. Happy New Year...New You!
Nancy & Joe xoxoxoxoxoxoxoxo

Anonymous said...

Hello Jessica,

My name is Andrew

I have heard so much of this amazing story, on and off, for a few years from my mother, NANCY SUSTERSIC.

I have always wished the best for you and very casually prayed for you.

It won't be casually anymore.
I will pray for you and your rehab very strongly and everyday, since I have cried reading the last email of you with your doctors walking for the first time again.

I have to tell you I have never cried, like balling my eyes out, from something I've read in an email.
Sure I have had a tear in my eye from a movie or 2, but nothing like reading about your AMAZINGLY UPLIFTING story.
I know they are tears of joy, for you.

My mother has told me stories of being in Mexico at your bedside, almost as if she loves you more than me.
So we are now your extended family, and I would love to meet you sometime and hug you for being such an inspiration to my mother and myself.

I have been on the outside listening in.
This email making me cry, feels like I am on the inside now.

I can't tell you how happy it makes me, to hear that you are getting better and moving around.


If you ever need anything, you have an army of loving friends and family that will carry you to the end of the earth!


Please know that you are amazing!

Your eager to hear more good news fan
Andrew Nimmo

Anonymous said...

Omg!!! So happy for you! What an amazing jouney you have taken and so blessed we are that you have shared it with the world!! You cannot begin to imagine how many lives you have touched. Bursting with tears of joy right now!

Anonymous said...

I am overwhelmed with joy and gratitude to our wonderful Lord! What a wonderful miracle fo celebrate the gift of his birth! Thank God for Dr. Cantu and thank you for perservering! Merry Christmas to you, mom and family!

Anonymous said...

Wow!!! This is the very best christmas gift ever! What great news! I am sk thrilled to witness your continued progress! This makes me want to cry. I love the way you and Dr. Cantu are looking at each other! You made it!

Anonymous said...

What a christmas miracle! I have watched the blog for years and was not sure you would survive. I am certain the love that surrounded her and Jessica's positive attitude are what enabled her to make it thru. A girl who can go thru what you have and come thru the other side smiling and standing will be unstoppable! I know you have intelligent goals set for your future. God bless you always!

Anonymous said...

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Robyn Weiner said...

Wow Jessica! Great news! Just returned from vacation and read your blog. Your friends at Garden City Middle School still have you in their thoughts and prayers. Love to the family! Happy New Year!

Karina Kuszewska said...

Dear Jessica, Thank you for sharing you story and sharing a message of HOPE.
I am in fight to win with RSD/CRPS II myself. I understand your life being normal and suddenly changed over night, because mine did too. I know the burning, torturous pain because I live with it 24/7. So far I failed every treatment. I am on tons of narcotic pain meds and they don’t even help with this agonizing pain. I use crutches to stay mobile but my RSD is progressive and it is spreading very quickly to other parts of my body so I am not sure how long I will be able to use my hands and crutches. You were right by saying that quality living like that it’s not life. It’s not living…Jessica, you are such an amazingly strong women! Thank you again for being so encouraging!

Karina 32yrs old (kkuszewska06@gmail.com)

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Jessica's Journey to Getting Her Life Back

By Sarah Gina (Jessica's Mom)


As we begin this journey toward renewed health we would like to express our sincere heartfelt thanks and appreciation to Dr. Anthony Kirkpatrick and all the work he has done and continues to do in order to bring patients like my daughter Jessica back to a more meaningful life and restored from this devastating illness. Also, special thanks to Dr. Fernando Cantu and his team of doctors in Mexico for taking on a difficult case like my daughters, Words cannot express the renewed sense of hope that we have that one day, our Jessica, can regain her life that has been taken away from her – God Bless you all!

Jessica’s Story

Once an A+ student who loved school, was involved in many extracurricular activities, played varsity tennis, lacrosse and gymnastics and enjoyed spending time with her family and friends, our daughter Jessica has spent the last 3 years incapacitated, paralyzed, unable to sit or walk and eat. She spends her days confined to a hospital bed, wearing sunglasses and noise-canceling headphones, due to severe light and sound sensitivity.

Jessica and her sisters, 2 mos. before becoming ill

The pain she feels is indescribable and all attempted treatments have not even come close to relieving her suffering.

She has seen many doctors, undergone numerous painful tests and procedures, has been prescribed various medications, and has been hospitalized frequently including being intubated and on a ventilator. She is severely debilitated and currently is only 92 pounds. This is certainly no life for a 21 year old young woman!


Jessica is suffering from neurologic Lyme disease and Reflex Sympathetic Dystrophy (RSD), a severely debilitating and painful neuromuscular disorder. She suffers daily with constant sharp, stabbing, tingling and burning pain; throughout her body; severe headaches; paralysis; intense muscle spasms; gastroparesis; seizures; twisting of her limbs (dystonia); sensitivity to any touch (allodynia); extreme sensitivity to lights and sounds; excessive sweating; swelling; fevers; softening of bones; decreased hair growth; redness and discoloration of the limbs; and painful skin ulcers. The pain is constant and unrelenting, but despite her suffering, her faith in God remains and she still has hope for her future.

Jessica's painful skin lesions

Jessica's journey began in 1999, when she was only 11 years old. She became very ill with Mono and was bed bound for 3 months. She subsequently developed RSD (stage 1) of the lower right leg. She received early intervention and returned to playing sports and enjoying her life.

Jessica, age 15, at summer camp

Four years later, in 2003, while away at a sleep-away camp, she developed a rash behind her right knee, coincidentally in the same leg that previously had RSD!

At the time, the camps nurse & doctor told her that it was “duck rash” – a rash from swimming in the lake with duck feces. However, Jessica was able to obtain photos from camp from another camper which shows the classic “bulls-eye” rash from Lyme disease! It wasn’t until much later and only after developing symptoms and becoming very ill, was the diagnosis of Lyme disease and Babesiosis (another tick-borne infection) made.


Most people (and doctors!) have no idea how serious Lyme disease can become and no clue how to properly diagnose it. Unfortunately, if she would have been promptly diagnosed and treated for Lyme disease, the RSD would not have been triggered and she would not be suffering.

July 2003, Jessica's Lyme disease rash

If it wasn’t for her doctor, Dr. Liegner, and his expertise with complex cases of Lyme, and his determination to try any means in getting her well, by getting a “team” of doctors on her case, we wouldn’t be here today, still fighting. We owe him a deep sense of gratitude for all he does for Jessica!

During these past three years and with the pain becoming more intense and unbearable she has been seeing Dr. Finkelstein for pain management. He has even made house calls to spare her the pain of coming by ambulance to his office. Jessica has been treated with multiple pain medications, at the highest possible doses, as well as an implanted dilaudid pain pump, which delivers potent medication straight into her spine. Many doctors have told us that with the amount of medications Jessica was taking would be enough to “kill a horse”—yet they had little to no effect on her. If it wasn’t for Dr. Finkelstein trying to alleviate her constant, severe, unrelenting pain, I don’t know how she would have managed. He is very special to us as well.

Recently Jessica was transported by air ambulance to Tampa, Florida to see Dr. Anthony Kirkpatrick, a world renowned RSD expert. Dr. Kirkpatrick told us that Jessica is one of the most debilitated patients he has ever seen.

Jessica getting into the air-ambulance to go see Dr. Kirkpatrick

Upon his testing and because Jessica's condition is so severe, Dr. Kirkpatrick is recommending the only treatment available that can possibly help relieve her suffering, and afford her some semblance of a “normal” life - the Ketamine Coma Procedure - a clinical trial that is being conducted in Monterrey, Mexico.

During this procedure Jessica will be put into a coma , with the hope that her nerves, brain and spinal cord will “reset” -so that her nervous system sends the correct signals to her brain.


Yes, this is a radical, scary treatment, however, for Jessica, "scary" is thinking that she could spend the rest of her life in this condition, unable to walk, eat, or take care of herself. Since all reasonable treatments have failed to help her, we feel we must try everything possible to help Jessica regain her life.

We understand that due to Jessica’s fragile condition, there is a high risk associated with this procedure. We are also aware that other patients with severe RSD like Jessica's have had success.

Jessica’s goal is to one day become a doctor. Our hope is that with this study she can have that chance. As her Mom, I know that she will be a great doctor because when a patient presents in her office and says “Doctor, I am in pain and words cannot express how bad it is” – my daughter –Dr. Jessica– will be able to say - :I know how you feel, I’ve been there too. So, take a seat and let me tell you a story”….

We are so thankful and feel so blessed to have been led to Dr. Kirkpatrick.

God is good and with his help guiding Dr. Cantu and Dr. Kirkpatrick, our hope is for Jessica to be able to return to us whole again and pain-free!