Jessica's Journey: 21 Days Till Christmas!!!

Friday, December 4, 2009

21 Days Till Christmas!!!

SPECIAL NOTICE: I have just heard from the Mah Family at Lymelinks that they have brought in extra help - so if anyone is wanting to order Jessica's necklace for Christmas presents, they can be ordered thru this weekend at the link below and they will arrive in time for the holiday!!! Thank you and God bless!!!

This necklace is dedicated to Jessica's struggle with Lyme Disease and RSD. It was made to honor her commitment to Lyme disease awareness by Lymelinks. I have heard that people are already receiving their necklaces thru the mail and it is beautiful. They feel that it is another way for them to feel "connected" to Jessica from afar.

To order Jessica's necklace, Click on NEW Link Below:

http://www.etsy.com/view_listing.php?listing_id=35743111.

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

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

Blessings to All,

Upcoming Fundraiser in Naples, Fl.:

Holiday Bazaar & Vendor Fair
This Sunday- December 6th - 2:00 - 5:00 PM
Indigo Lakes Clubhouse-Naples, Fl.
Call Nancy (419)350-9058 for gate code

***Put on by Lisa Reber & her Stampin Up friends, and, Joanne Hartmen & Team Jessica!!!***

Over 20 Different Vendors - Door Prizes every 15 mins.!
Bake Sale run by Oak Ridge Middle Schoolers!
***Bring your family & Friends!!!***

UPDATE:

I can't believe that Christmas is only 3 weeks away. This is the season of Advent. It is the time of the year that lays the foundation for the celebration of Christmas. As we wait for that special day, we remain hopeful in the promise that God made to his people - the promise of restoration through the birth of our Lord Jesus. This was to be our gift from God - the true gift of "love". It is the most special time of the year that we rejoice and pray and give thanks for everything in our lives. It is a time of expectation as we wait for the coming of our Lord.
During Advent, we have the chance, once again, to receive Christ anew in our lives. To refresh and restore our faith with that ancient truth and future hope.

That is our hope as well for Jessica. To try to restore her body back to better health; and to renew our faith as well during this Advent season to know that all things are possible through Him who was born over two thousand years ago! As you know, Jessica has been struggling this past week with her gastrointestinal issues. She is also still experiencing problems with her vision and that has been very hard on her to say the least. But, just as we are waiting in anticipation for the "coming" of our Lord Jesus, so to, are we waiting for Him to do the impossible, because we know, through our faith, that all things are possible with Him!!!

So we ask that God bless you all this Advent season and in the coming year and may you all feel renewed and refreshed in His love!

Special thanks to Pastor David Long of the Union Church in Monterrey. He brought communion to Jessica and I yesterday and we are so very grateful to him and his wife and the entire congregation - they have all been a blessing from God to us!!!

In God's love, with hope,
Jessica's Mom

"Nothing is impossible with God" Luke 1:37

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

5 comments:

Anonymous said...: Mary, did you know
That your baby boy will one day walk on water?
Did you know
That your baby boy will save our sons and daughters?
Did you know
That your baby boy has come to make you new?
This child that you've delivered
Will soon deliver you

Mary, did you know
That your baby boy will give sight to a blind man?
Did you know
That your baby boy will calm a storm with His hand?
Did you know
That your baby boy has walked where angels trod?
And when you kiss your little boy
You've kissed the face of God

Mary, did you know?
The blind will see
The deaf will hear
And the dead will live again
The lame will leap
The dumb will speak
The praises of the Lamb

Mary, did you know
That your baby boy is Lord of all creation?
Did you know
That your baby boy will one day rules the nations?
Did you know
That your baby boy is heaven's perfect Lamb?
This sleeping child you're holding
Is the Great I Am

http://www.morganweistling.com/galleries/gallery03/kissingfacegod.html
Great Painting Title:
"Kissing the Face of God"; December 4, 2009 at 10:38 AM
Anonymous said...: Won't it be incredible when He comes again in great power & glory!

He spoke the world into being - now that is power!

And He holds your sweet Jessica so lovingly in His hands. These same hands that were used to measured the waters in the hollow of his hand, and to mark off the heavens.

It is Him who we trust and wait on for the healing of your sweet Jessica. May it be very soon!

With love & prayers,
The Turners; December 4, 2009 at 10:56 AM
Anonymous said...: Dear Sarah,

I have only emailed you, but you are a truly wonderful mother. I pray hard with every day, that Jessica will have a small victory after victory. You and Jessica and this blog and Mr. Stevens have made me want to be better and stronger. I knew faith through my minister, but since I have read about Jessica and talked with you and David. I have now been touched by it. Our family will pray every day for Jessica, to win this battle and keep your strength up.
love to you

PS: Please tell me when your boxes arrive and if Jessica can see it.; December 4, 2009 at 1:00 PM
katherine! said...: hey mom, this is the perfect song for you and jess!! i love you soo much and cant wait to see you

Come stop your crying, it will be all right
Just take my hand, hold it tight
I will protect you from all around you
I will be here dont you cry

For one so small,you seem so strong
My arms will hold you keep you safe and warm
This bond between us cant be broken
I will be here dont you cry

And youll be in my heart
Yes, youll be in my heart
From this day on
Now and forever more
Youll be in my heart
No matter what they say
Youll be here in my heart
Always

Why cant they understand the way we feel
They just dont trust what they cant explain
I know were different but deep inside us
Were not that different at all

And youll be in my heart
Yes, youll be in my heart
From this day on
Now and forever more
Youll be in my heart
No matter what they say
Youll be here in my heart
Always

Dont listen to them, cause what do they know
We need each other, to have and to hold
Theyll see in time, I know

When destiny calls you, you must be strong
I may not be with you, but you gotta hold on
Theyll see in time, I know

Well show them together cuz...

Youll be in my heart
I believe, youll be in my heart
Ill be there from this day on
Now and forever more

Youll be in my heart
No matter what they say
Youll be here in my heart always

Always
Ill be with you
Ill be there for you always
Always and always
Just look over your shoulder
Just look over your shoulder
Just look over your shoulder
Ill be there always; December 5, 2009 at 12:06 AM
Anonymous said...: Jessica, I read a book called "Traveling Light" by max Lucedo. The book is based on Psalm 23. I thought it would be a good book for you and Sara Gina :) Faithful In Prayer, Crystal; December 5, 2009 at 1:27 PM

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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!

What is RSD?

Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire...

Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating chronic neurological disorder that occurs when the nervous system malfunctions in response to a injury or illness- in Jessica's case- Lyme disease.

RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.

This rare condition is a mystery to scientists & often is misdiagnosed. Much more research is needed to find the cause of RSD and ways to treat and prevent it.

Ketamine Coma Study

The Ketamine Coma Study is a clinical trial procedure being conducted in both Germany and Mexico, that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options.

During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So far, only about 100 patients have taken part in the study. For many, it has been miraculous!
However, like any treatment, there are no guarantees. There are also significant risks, especially in Jessica's fragile condition.

The Ketamine Coma shows great promise as a treatment for severe RSD- the key is going to be more research.

What is Ketamine?

Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals.

There are currently three kinds of ketamine treatments: The Awake technique (continuous low dosage for 4-5 days), the Outpatient low-dose infusion (4-5 hours a day for two weeks, then gradually-lower doses), and the Coma technique (continuous high dosage for about a week).

The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and "reboots" the patient's brain, much like a computer.

Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness.

Why Mexico?

There is a popular misconception that medical care in Mexico is of inferior quality. However, this is not (always) the case. In fact, many facilities in Mexico are state of the art, with top notch care.

Because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries.

Jessica's doctor, Dr. Anthony Kirkpatrick, is one of only a few specialists involved with this study in the U.S. He has teamed up with Dr. Fernando Cantu and his team in Mexico to perform the Ketamine Coma.