Friday, February 12, 2010

"Small Steps...Huge Advances"

Hi to Family & Friends,

To view Jessica on Fox TV, Click on Link Below:

http://www.youtube.com/watch?v=PW_vstm0bS8


Whatever your cross,
Whatever your pain,
There will always be sunshine,
after the rain.

Perhaps you may stumble,
Perhaps even fall.
But God's always there,
to help you through it all!

Jessica continues to take the "small steps" she needs to take towards the ultimate goal of a better functioning life and one with less pain. Yesterday the plan was not to move her and instead give her body rest. Today she will once again receive a booster and during the booster Dr. Cantu and I will try to raise the head of the bed in order to try and allow her body to get accustomed to sitting up and not have that "fainting/dizzy" feeling that she gets. We will use pillows to prop her up and keep her in the bed this time instead of the reclining chair.

"Small steps --- huge advances" : This is Dr. Cantu's famous saying for all of the coma patients suffering with this horrible disease called RSD. Jessica amazes me every day with her perseverence, courage, and strength! She has been through alot, and she has seen alot of "dark" days. I guess you have to go through the "dark tunnels of life" in order to see the "light that exists" when you go through them --- always knowing that God has been with you all the time, either by holding your hand, or guiding your "steps" and sometimes even "carrying you through"!!!

God truly blessed my husband and I when he entrusted Jessica in our care 22 years ago!

May the peace of God be with you all today,
Sarah Gina (Jessica's Mom)*

"Along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them".
Isaiah 42:16

And Jesus said to the disciples, "If anyone would come after me, he must deny himself and take up his cross and follow me."
Matthew 16:24

***To Post a Comment, CLICK on Comments Below***

10 comments:

Anonymous said...

We will keep praying for you both as you travel down this journey one small step at a time.

Keep going, Jessica, you will get there!

With love & prayers,
The Turners

Fern said...

Jessica and Sarah, hang in there. Baby steps!

Hopefully today your booster will go well and I pray that you have some success with the elevation of your bed. The body will need time to adjust to the new "scenery". May you feel good about these attempts and may you keep from the nausea and dizziness at bay.

God has given you and your family great strength, patience, and love. May you feel His presence in the room with you today in everything that you do.

Anonymous said...

Way to go on the trial move to the recliner and the "sitting up" in bed. I think these are more than baby steps, these are great strides!

Thanks also for posting about the "Queen of Ketamine" getting a gram over 2 hours. Now I don't feel so bad getting 250mg as an outpatient which I'm told is a high dose for outside the hospital. My doctor and I don't have a lot to gauge it by except what gives relief without dangerous side effects. I have full body RSD and sometimes I think for us it just takes what it takes!

Cheering for you...your friend...Linda Pedigo...West Lafayette, Indiana

Anonymous said...

Praise the Lord!
Look at all that has happened to improve Jessica's health!
Gina can you remind us of all of them?
the sores, the leg movement, the sight.
Thank you Lord for so much you have done. Please continue to help Jessica heal and the Stevens family to have continued support and courage.
Please guide us all to be in the place that you want us to be.
Linda

Harv and Kathy said...

Thank you, Sarah, for posting the story of the hands. It is an inspiration to know that some are the artsts, and some are the ones who assist the artists, but all are in our marvelous Creators Hands- who holds us all. I pray that Jessica's booster will enable her to be elevated again today and to be able to handle that well.
God's blessings to you in big and small ways today.
Kathy

Anonymous said...

Dearest Jessica and Gina, Jess, you are the bravest person I know. It is hard to take baby steps but you are hanging in there and doing what you have to do. You will come out of this with an amazing perspective and compassion for those people who are experiencing pain in their lives. Gina, you are incredible. The stories you write go straight to my heart and it is though they are food for my soul. Also, the Bible quotes that you use are somehow appropriate for what is going on in my day as well... I think it is the Hand of God working through you to help all the people reading the blog!! Thank you both and hang in there!! Love always, Angel xo

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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!