Jessica's Journey: You Raise Me Up!

Wednesday, October 14, 2009

You Raise Me Up!

Hi to all from Mexico,

Just CLICK on the following link to see Jessica:

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

The following lyrics come from one of my favorite artists named Josh Groban. The title of the song is "You Raise Me Up". I have received in more than a few comments on the blog, the link to this song and unbeknownst to all of them, this song is one of the songs that I have been singing to Jessica every night here in Mexico, since she came out of the coma, to try and help her to sleep! It is also a favorite of my other daughter Michelle as well because I would play the CD all the time in the car! If you listen and read some of the lyrics, you can see that it is definitely spiritual, and speaks of our relationship with God. Enjoy the words:

Here are some of the words, as I sing them to Jessica:

"You Raise Me Up" by Josh Groban:

When I am down, and oh my soul so weary....
When troubles come and my heart burdened be...
Then I am still and lay here in the silence...
Until you come and sit awhile with me!
You Raise Me Up,
so I can stand on mountains.
You Raise Me Up,
To walk on stormy seas.
I Am Strong,
When I am on Your shoulders,
You Raise Me Up,
to MORE than I can be!!!

Remember, God is with you - every step of the way!
" I will make them walk by streams of water, on a straight path, in which they will not stumble." Jeremiah 31:9

*****
Jessica had a tomography test done today. This test involves injecting IV contrast into her J-tube to see how the intestines are functioning. The tests revealed that they are moving very slowly and so Dr. Luigi is going to get a G.I. consult to figure out what the next course of action will be. We are still on hold for ketamine boosters due to her blood levels, but hopefully, these can be resumed as Dr. Cantu is due back tomorrow as well! She is a fighter and we will keep going forward toward that ultimate goal of a better quality of life! God is good and he does answer our prayers! That is evident in the fact that we are here! May God bless you all today and remember to allow the Lord to RAISE You Up Today!

All my love,
Sarah Gina

AND TO ALL OF YOU - YOU RAISE "US" UP WITH YOUR COMMENTS - SO THANK YOU ALL VERY MUCH!!!

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

9 comments:

Anonymous said...: Rom 8:25 But if we hopr for what we do not yet have, we wait for it patiently.

Heb 11:1 Now faith is being sure of what we hope for and certain of what we do not see.

May God bless your faith and heal sweet Jessica.

With love & prayers,
The Turners; October 14, 2009 at 4:00 PM
Anonymous said...: could you please post your email address so I could send you a personal message?; October 14, 2009 at 5:03 PM
Anonymous said...: I love that post from the Turners,BEAUTIFUL!
Also love that song by J.G.! I wonder if he knows how many people that song has touched,changed & helped!It gives me goose bumps!
It's beyound my imagination to know what you & Jessica are going through.I read your blogs every day hoping to hear about that miracle that WILL come for you & your Family.I'm praying for it to happen NOW!! PLEASE Jessica hang in there girl,keep fighting with that mighty will you seem to have.And know there are more people all over this country praying for you to be pain free.
PEACE & BLESSINGS Jodi XOX; October 14, 2009 at 6:26 PM
Nancy said...: Hi Jessica and Sarah Gina. Can't wait for Dr. GreenShirt to come back and make everything better!!

You lift us up with your faith and belief!! Thank you for your love in sharing your journey with us.

Peace be with you...Love Nancy; October 14, 2009 at 7:07 PM
Anonymous said...: Just the other person, I would like to send you a personal email also. Please post your personal email address if you can. Thanks from someone who knows.; October 14, 2009 at 8:21 PM
Ashley said...: Hi Mrs Stevens,

I send my prayers to you everyday. Please tell Jessica that I was looking through my old photo albums today and came across a bunch of pictures from when we were having one of our many sleepovers. We are dressed in Pajamas eating corn muffins in your old kitchen on Huntington. I LOVED those sleepovers. Tell Jessica I love her and that I can't wait to see her when she comes home.

XO
Ashley; October 14, 2009 at 8:37 PM
Aunt Carol said...: Hi Jessica and Sarah.... There are so many messages to you both..praying for your return. Just know that we love you both so much.. Your comments each day raise all of our hopes...love you both..Aunt Carol; October 14, 2009 at 9:25 PM
Anonymous said...: Thoughts and prayers are with you Jessica and Sarah Gina. Keep fighting Jessica you will get better soon!!!

Love,
Bill and Marie; October 15, 2009 at 12:19 AM
Anonymous said...: WOW!!! Kirsten and I love Josh. We met him in the city. He's adorable. Great song, great words for two great people. Love you and pray every day for God to "lift you up". Bonnie; October 15, 2009 at 10:53 AM

Post a Comment

Subscribe to: Post Comments (Atom)

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.