Wednesday, September 9, 2009

Questions....and some Answers......

Hi to all,

We thank you all for your thoughts and prayers and for all of your concerns regarding how Jessica is currently doing. I thought I would share some answers to some of the questions I have been receiving. Here goes:
1) Does she have her memory back yet? No. The past few days she has retrieved the basic knowledge of who she is, who I am, and her family, but it doesn't last long. As Jessica says, she goes into the "black hole" where I guess her "new" brain is trying to process all the information that it contains. The doctors have said it will come fully back soon. Today can't be soon enough though!
2) Does she still have noise and light sensitivity? Yes. Apparently, if you go into the coma with this as a problem, it can become more heightened with the ketamine. The doctors are having us remove the sunglasses and noise-cancelling headphones 3X a day and increasing it by 1 minute each day.
3) Does she have pain? Yes. But remember, all patients emerge from the coma with pain. It is the one question as they emerge from the coma that you want to ask, but the one question you can't. You see, the brain has to now differentiate between pain that existed before and what may be "normal" pain associated with the movements that the body made during the coma. In Jessica's case, it is further complicated by the fact that she still does not have her full memory back and so we can't compare what she is feeling now and what she felt before! From what we are told by previous coma patients and their families, this is the hardest part for the patient. Also, she is probably the most debilitated case of RSD they have seen, so her recovery is going to take longer.
4) Can she move her legs? This is probably the hardest question to answer as it is the most difficult. As you know, when Jessica was emerging from the coma she moved her legs. At that point she was still under the effects of ketamine and proporfol. For me, it was a sight that I will never forget and one that I know, with the certainty of God's awesome might, Jessica and I will see again!!! - I believe it was God opening a tiny window into what will be one day- that is our prayer and the hope that we have as a family!!! Jessica moves her toes everyday for the doctors!
5) Can she eat? This is a slow process and one that is evolving day by day. The doctors start with baby food and try to work up from there. Jessica enjoys the ice pops that I put into the freezer that I brought from home and hopefully one day soon she will be able to enjoy all the things she hasn't been able to in the past 2 years!
6) How long will we be here? That is another question that is difficult to answer, but let me say just this: Jessica and I and our family have been living day by day for the past 3 1/2 years. We will continue to do so. Jessica and I are here for as long as it takes to get Jessica back to a more meaningful, functional state of life!!! She deserves it more than anyone I know! We are in Mexico for as long as the doctors feel they can continue to help us achieve this goal!

Well, I hope that this helps to answer some of the questions that I have been receiving by your comments and calls. You are all our family and friends and so we thought it only right to answer some of them.

I am so very proud of my daughter Jessica. She continues to amaze me everyday in what she endures on this quest, her journey, to becoming well again and living pain-free. God truly blessed me 21 years ago, when he gently put my sweet little Jessica in my arms, and he entrusted her in mine and her fathers care. I want to make God proud by being the best mom that I can be and ultimately bringing Jessica back to the USA, to that brick house she calls home..............

Keep praying and may God bless you all,
Sarah Gina
(Jessica's Mom)

***To post a comment, CLICK on comments below***


Anonymous said...

There is no doubt, Mrs. Stevens, that you are the BEST mom! The Jermains are all constantly praying for Jessica and all of you!!


Anonymous said...

Sara Gina, Hang in there and thank you for the updates on Jessica. I can't wait until i get home from work each day to go on read the Blog and Jessica's amazing recovery. You are the angel on her shoulder. Doreen in Naples Fl.

Daniel said...

Hello, dear Sarah Gina.

This is Danny from Colombia Southamérica again.(VaughDe and Sarah Peterson Friend)

thanks for the update and the answers you have posted. i know this will be a slow process to get her agian to a functional person, but i feel how strong and beautiful she is, and all the love and support that she has around her; so she should get better and better, after this risky treatment.

Again, i offer my help, in the future, when she is able to function better, and maybe even to travel with you, to have Hyperbaric Oxygen Treatments here almost free, to complement and boost her imrpving in the future, if needed, or convenient for you.

im also contacting a few very good friends that may join this group for praying for her, and also to do some kind of energetic or alternative distant good intentions and aura healing, like reiki, or pranic healing. i will update you about this in next days, if you agree. (let me know when you can)

i hope she could get a little more sleep lastnight, and i will kee my intentions on this, as well as for you.

You are not only the best mother, you are the perfect mother for her,, so dont hesitage for a minute that GOd is ¨proud¨of YOU.. how couldnt?

miracles can happens,, and they will. now Jessica is part of my extended family too in someway..
so i will be paying attention.

my email again, if you have a little space, energy or time:

Hugs,, and keep inspiring us..

send a kiss and a word of suuport to jessica when she feels able to. there is light at the end of the tunel..


Daniel said...

one more thing?

do you have a grop of, praying for Jessica on Facebook,? if not, do you want me to help you create one there. (this is how i met Sarah Petterson).

hugs,, and kiss to your princess warrior.

Anonymous said...

Where does the saying "Nothing comes easy" come from?
It takes nine months for us to have a child.
So Jessica dear, we will continue to pray for you and your family until you are healed. We will wait for you to relearn all the things you learned your first 21 years.
We will be there to help you create new memories.
You have our unconditional love.
So rest now and progress a little bit more each day.
Peace, love and prayers
Linda in Saraoga

Anonymous said...

Where does the saying "Nothing comes easy" come from?
It takes nine months for us to have a child.
So Jessica dear, we will continue to pray for you and your family until you are healed. We will wait for you to relearn all the things you learned your first 21 years.
We will be there to help you create new memories.
You have our unconditional love.
So rest now and progress a little bit more each day.
Peace, love and prayers
Linda in Saraoga

Angel said...

Dear Jessica, We are praying for you day and night. You have inspired all of us more than you know with your beautiful spirit and your bravery. I pray that you get some peaceful sleep and that your memory comes back soon. Dear Gina, My heart goes out to you. I am there with you in spirit and think about you all the time. Remember that miracles happen- we've seen some already. There are more amazing ones to come! Hang in there! Love always, Angel

uncle vinnie said...

Dear Stevens Family, You are in our thoughts and prayers every day and night . You all have the strength beyond anyone's imagination . It is so appreciative that you have been sharing with everyone the 'blog.Not only is it so satisfying to hear the good news when it occurs ,but also it is so informative and revealing.Dear Jessica,hope that your memory file gathered some more of all those precious memories with your Family today and every day to come.Love Uncle Vinnie and Aunt Judy

Anonymous said...

Thanks for the update. I hope you and Jessica are getting some rest :) I will continue to pray for Jessica and you. Crystal Ulmer

Anonymous said...

Sara Gina, There is no doubt about your strength as a mom and your incredible reserve to endure. God bless you and beautiful Jessica and the bright future ahead. Love, Bonnie and thanks for the answers to our questions!

Robyn Weiner said...

Dear Jessica's Mom,
Thank you so much for sharing your journey with all of us. We all pray for Jessica's return to Garden City soon. In the meantime, we will take care of Michele at Garden City Middle School. Please send Jessica my love.

Mrs. Robyn Weiner, Counselor

Anonymous said...

May God's strength get you through each day. May He heal precious Jessica completely.

Exodus 15:26
... for I am the LORD, who heals you."

With Love & Prayers,
The Turners

Aunt Carol said...

Dear Jessica and Sara...
Your blog today answered every question regarding Jessica's recovery. I know that with each day comes new challenges. You have both been so strong and courageous throughout this ordeal. We pray each and every day for Jess to be without pain, to move her legs, not worry about light and sound and to be able to sleep and rest so that she can recover fully. We love you both so much and pray for your speedy return....Love Aunt Carol & Uncle Anthony

Anonymous said...

I keep reading your blog and today you answered alot of what I have been wondering. Sara Gina, it is so clear to see the stregenth that Jessica recevies from you. God knows your all such a loving family surrounding Jessica and all on your blog with prayers and support encircling your family.
Jessica is born again and now it is baby steps. Each day a little more.
God Bless You!
Ann Abenanti

Anonymous said...

You don't take "baby steps" for the distance they cover, but to put yourself within reach of life's magic.

Just like you don't hoist your sails to move the boat, but to put yourself within reach of the wind.
Hoist, baby, hoist, baby, 1, 2, 3, 4 -
The Universe
Hi Sara Gina and Jessica. It's Nancy and as I sit here in the lobby looking at emails the one above was so in tune with all the conversations we heard and had today. "Baby Steps"...that's how Jessica will reach her goals!

So how on earth did the Universe know about the Baby Steps????
Love Nancy...Sleep Tight!!

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!