Thursday, May 20, 2010

Transitions


Hi everyone,

To Order Jessica's Journey Necklace, Click On Link :
http://www.etsy.com/view_listing.php?listing_id=41687962

To view Jessica on Fox TV, Click on Link Below:
http://www.youtube.com/watch?v=PW_vstm0bS8

To view New Vemma Product Video, Click on Link Below:
http://bonusbiz.vemma.com/v.asp?IDNum=A4FAA92D%2D2723%2D425D%2DB822%2DF6E131A6817A&CO_LA=US_EN
(Sales of Vemma Products also help Jessica's Journey-for more info contact Nancy @ (419)350-9058)

How is everyone? I hope all is well. Sorry I haven't blogged since the "water" problem, but we have been busy trying to formulate Jessica's transition from the hospital sometime this month. As we have been here for awhile now, those plans are not easy and alot of things have to be done and considered, as well as what Jessica still has to accomplish before we can actually transition from the hospital setting. Please pray for Jessica, me, and for Dr. Cantu as we try to make this happen, knowing full well that God is guiding us all and that ultimately His plan is the best. I will keep you all posted, but in the meantime, keep those prayers coming!

I would like to thank Dr. & Mrs. Zavala for showing me the city of Monterrey and for the lovely lunch we had at an Italian restaurant called "Ianilli". We all had different pasta dishes and shared "tiramisu" for dessert!
Also, we would like to thank Cindel, Adriana, Alex, Nancy and Claudia for visiting us. They are Barbara's family and they were here with their grandma Blanca, who had fallen and had to have hip surgery. They brought us DVD movies to watch and magazines to read, as well as delicious Mexican pasta made with a delicious spicy cilantro sauce. Cindel also drew a beautiful picture for Jessica using "pointulism"- it is amazing and we will treasure it forever!

I will say again - we have really met a lot of wonderful people here in Monterrey and they have become our very dear friends. Monterrey is a beautiful city, rich in tradition, culture, and people.

Jessica and I would also like to express our deepest sympathy to Blair Webber, a former coma patient that we met recently while he was here for boosters. His Dad Douglas passed away after a courageous battle with cancer. Our heartfelt condolences go out to Blair, his Mom, his siblings, and his family during this difficult time.
Also, Fern Kwantes is back from Canada for her boosters. This time her husband Theo is with her and it is good to see them both here on the 8th floor of Hospital San Jose Tec. May the boosters bring her relief from the pain as they do for Jessica!

*************
Here is an important video to watch - in honor of the month of May being Lyme Disease Awareness Month.

The Dr. Oz Show- Avoid This Bite: Lyme Disease


video

Do you know what to do? Learn proper tick removal technique and Lyme disease prevention....



10 Fact About Lyme Disease
(Education and Prevention is Key)



1.Lyme disease is the most prevalent vector-borne disease in the USA and is prevalent worldwide. A patient's county of residence does not accurately reflect his or her Lyme disease risk because people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure to Lyme disease for each individual.

2.Lyme disease is a clinical diagnosis. The disease is caused by a spiral-shaped bacteria (spirochete) called Borrelia burgdorferi. The Lyme spirochete can cause infection of multiple organs and produce a wide range of symptoms.

3.Fewer than 50% of patients recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.

4.Fewer than 50% recall any rash. Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early Lyme. Atypical forms of this rash are seen far more commonly. Absence of the rash does not mean you do not have a tick-borne infection.

5. Lyme disease is under-reported. The Centers for Disease Control and Prevention (CDC) surveillance criteria for Lyme disease were devised to track cases for epidemiologic purposes and were never intended to be used as diagnostic criteria. It is estimated the actual number of annual Lyme cases may be 6-12 times higher than reported.

6. Lyme disease is frequently misdiagnosed. Lyme disease has been called the great imitator and should be considered in the differential diagnosis of rheumatologic and neurologic conditions, as well as chronic fatigue syndrome, fibromyalgia and any difficult-to-diagnose multi-system illness.

7. Laboratory testing for Lyme disease is unreliable. A person may test negative but still have the disease. The ELISA screening test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity.

7.There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to the antigenic variability of the spirochete and its ability to evade the immune system and antibiotic therapy, leading to chronic infection.

8.Testing for other tick-borne infections should be performed. The presence of co-infection with Babesia, Anaplasma, Ehrlichia and Bartonella organisms points to probable infection with the Lyme spirochete as well. If these coinfections are left untreated, their continued presence increases morbidity and prevents successful treatment of Lyme disease.

9.There has never been a study demonstrating that 30 days of antibiotic treatment cures Lyme disease. However there is a plethora of documentation in the US and European medical literature demonstrating by histology and culture techniques that short courses of antibiotic treatment may fail to eradicate the Lyme spirochete.

10. Perform frequent tick-checks- and don't forget to check your pets too! Avoid tick-infested areas- such as leaf litter under trees. Wear light colored clothing so you can easily spot ticks and be sure to use DEET on skin and treat clothing with spray containing permethrin.

Disclaimer: The foregoing information is for educational purposes only. It is not intended to replace or supersede patient care by a healthcare provider. If an individual suspects the presence of a tick-borne illness, that individual should consult a healthcare provider who is familiar with the diagnosis and treatment of tick-borne diseases.


In God's Love,
Sarah Gina (Jessica's Mom)*

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

8 comments:

Anonymous said...

Wow, Jessica, you have come such a long way! Almost time to transition out of the hospital.

It has been really amazing to watch God working in your lives through His people and the doctors!

We will continue to trust in His goodness and in His heart and we will continue to pray for you and all the RSD patients. With God all things are possible!

Someone told me recently, when we are in a storm not to think how big the storm is but rather how BIG our GOD is.

May God continue to richly bless you and your family and bring you to completely healing!

Say "hi" to Fern & Theo for us!

With love & prayers,
The Turners

Anonymous said...

Dearest Gina and Jessica, I will pray for you to have a smooth transition from the hospital. Jess, I am so glad and thankful that you have gotten to this point in your healing where you can consider it!! I am also so glad that you have made many good friends down there in Mexico. Gina, the water story, with the floating shoes, sweeping the water with a broom, and Dr. Cantu exclaiming, "What mess have the two of you gotten into today??", reminds me of a Mexican hospital episode of I Love Lucy!! I promise to go out with you for a margarita when you ladies are back home!! Hang in there and keep smiling!! Love always, Angel xoxoxoxoxoxoxo

Blair Webber said...

It was so good talking with you today, you really made me relax a little after such a very hard time with my Dad's passing, i miss him so much! Last week when my Mom and myself were at the Hospital that Dr Oz show was on and it was the one on Lyme Disease. I didn't think about it today when we talked, but i just kept thinking about you Jessica! You are an expert on this desease and if i ever have any questions on the subject,i would talk to you before anyone else because i think you know more about this than most Doctors and i would trust what you say more than anyone. Thank you for being so kind to me and my family, you are wonderful people that i feel honoured to have met. I will continue to pray for you that things keep going forward in the right direction, and look forward to seeing you both when i return, Lots of Love, Blair....

Harv and Kathy said...

Sarah- and Jessica-
How wonderful that you are planning to move out of the hospital and into an apartment! We will pray for the work to be done in preparation for that and for your continual small steps that have become a huge step to this time.
Sarah- hope you are still smiling about last night! It was great to be in on that on skype!
Happy Pentecost Sunday,
Kathy and Harv

Anonymous said...

What It Means To Be The Parent Of A Sick Child...

It means knowing that everyday is a blessing and a gift.

It means knowing that you are the luckiest person in the world, just to be a parent.

It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no reason.

It means praying for a miracle to save your child's life.

It means praying your marriage is strong enough to endure the hospitalizations, separations, and grief.

It means praying for the will to live, even if your child doesn't.

It means your own heart knows a pain, no parent should know.

It means feeling weak, helpless, angry,and depressed because your child's fate is out of your hands.

It means feeling strong, determined,and brave because you know you have to be.

It means your love knows new unlimited boundaries.

It means your pride in your child's accomplishments is unparalleled.

It means your pain has taught you a deeper sense of compassion than you ever imagined.

It means we are all united by the same feelings.

It means that we all know the mixed up emotions of dealing with death -
but more importantly of living with life.

It means that even though we are strangers we are more to each other than friends could ever be.


Sarah Gina, you are a wonderful mother!

cindel. said...

Sarah, it's been wonderful to meet you and Jessica.
You're two of the most inspiring and strong women I've ever met (and I'll ever meet), and I wish you all the best of the best, because you deserve that and more.
Thank you so much for opening your hearts to me and for letting me be a part of your lives.
I'll see you tomorrow :)
Cindel.

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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!