Hi To All,
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Update on Jessica:
Jessica is continuing to achieve her "small steps" towards recovery. Today she will receive a big booster to help alleviate some of her pain and we will move her once again to the reclining chair to try to get her body and brain used to sitting up more and more. She is off of TPN and is trying to eat more types of soft foods - such as mashed potatoes, noodles cut-up, broths with tiny cut-up carrots, and Stage 3 baby foods. She eats small amounts of these foods as tolerated. Small foods = Small steps. She is still experiencing headaches along with the burning pain. One day I will try to blog the complexities of Jessica's illness, as some things are hard to explain, complex to understand and even harder to actually live through.
Also, Dr. Dillman, the ID doctor has finally stopped all IV antibiotics and all cultures are currently negative for infections. As you know, she has been on antibiotics for the past 10 weeks due to infections. The thought is to take her off of them and see if anything develops. Due to an ongoing rash on her face, shoulders and back he has put her on an antibiotic lotion and oral antibiotics. We believe it to be a neuro-dermatitis from the RSD. Her face looks red - as if she has been sitting out in the sun ----- IF ONLY that was true!?! I will keep you posted.
Also, today we welcome back Fern and her friend Kathy from Canada. She is back again for boosters that she can't get in Canada. These boosters for Jessica and for Fern are essential in trying to alleviate the pain from RSD and to allow these patients a chance at moving forward towards a better functioning life. I have also heard from Devon, Justin, Elana, Rachel, Lindsay, Emily - please pray for these fellow RSD coma patients and their recoveries as well.
Special thanks go out once again to my new friend Blanca and her family that are taking care of their family member Olga here on the 8th floor of Hospital San Jose. Blanca, along with Lupita, Raynoldo, Tessi, and others have been so kind to me - they are true angels of God! Two days ago, Raynoldo asked me if I needed anything from the "outside". I asked him to pick me up a bag of coffee for my small coffee machine (Yes - I have a small coffee machine in the hospital room --- I can't live without it!) Well, Raynoldo comes back that same day with not just one bag of coffee - but three bags of coffee - from Starbucks! I thanked him so much by giving him a kiss, as he would not take any money from me! With that, I did what my Italian mother would have done --- I made a few pots of coffee and shared them with my new friends from Mexico! When I got back in the room Jessica asked me what I was doing, so I told her. All she said was:"Mom, even here in Mexico you have a way of making friends!!!"
Also, special thanks go out to Blanca once again. She brought 3 American magazines (People, OK, & Allure) for Jessica to look at and she gave me a present as well. It's a beautiful black caftan with flowers and birds on it. She said she always sees me in my pajamas in the hallway - and so she wanted me to look glamorous for when I walk the halls of the 8th floor of Hospital San Jose! Barbara - my friend from the Union Church had also stopped by with doughnuts and she got to meet my new friends as well. God does work through his people - even here in Monterrey Mexico!
Well, enough blogging for today. Dr. Cantu is due to arrive to give Jessica her booster at 3:00 PM. (That is American time --- in Mexico time it could be more like 5:00 PM!)
Stay well everyone.
To quote two of Jessica's favorite doctors:
Dr. Cantu - Mexico - "Small steps --- huge advances!"
Dr. Liegner - N.Y. - "Where there is life --- there is Hope!"
In God's love, always,
Sarah Gina (Jessica's Mom)*
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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!
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.
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 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.
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.
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.
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!