Hi everyone,
Jessica is remembering bits and pieces of her past, thanks to all of your prayers! She remembered that her childhood home was #90 and that it was a brick house. She recalled being in school when she was younger and it was her birthday and she had a crown on her head that was made by the teacher and she recalled singing " Jesus Loves Me " (This was at Resurrection Lutheran Preschool in Garden City). But, until she has her full memory back and is more aware of who she is, who her family is, and where she is, her journey will be much harder. The doctors have assured us that it will come back and not to worry; but that is sometimes easier said than done!
Today is Sunday; the day most people go to church and pray for God's blessings and also meet, talk, gather and commune together. Jessica said such a thought provoking response when I told her what Sunday is all about. She said: " Mommy, I thought that God is everywhere, that you don't only have to go to church to talk to God, that we can even talk to him from Room #844 of this hospital in Mexico!! I have always said, Jessica is smart, very smart indeed!
Blessings to all, and remember, wherever two of you shall be, there too God will be!!!
In God's love,
Sarah Gina (Jessica's Mom)
***Interesting post-script --- After posting this blog, I got a call from our pastor - Pastor Browning - from N.Y. I recounted Jessica's memory of preschool at the church and the song " Jesus Loves Me ". He said that one of the songs that was sung today in church was " Jesus Loves Me "!!! God does work in many, many ways..........***
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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 illThe 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 lesionsJessica'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 campFour 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 rashDuring 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. KirkpatrickUpon 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!
6 comments:
Hi Sara and Jessica... That is amazing about the pastor telling you that "jesus loves me" was the song that they sang today in church. Like Jessica said we pray in many ways...and I am praying very hard for Jessica. It is comforting to know that the doctors are encouraginbg and know that she will emerge from this. My love and thoughts are with you every minute that passes. I only hope that we will be reunited soon. Love you...Aunt Carol
The Mass today was about healing.
Today's hymn was YOU ARE MINE.
some of the words- Do not be afraid, I am with you. I have called you each by name. Come and follow me, I will bring you home, I love you and you are mine. I am strength for all the despairing, healing for the ones who dwell in shame. All the blind will see, the lame will all run free, and all will know my name. I am the word that leads all to freedom, I am the peace the world cannot give. I will call your name, embracing all your pain, stand up, now walk, and live!
Go for it Jessica and Gina He is embracing all your pain, Stand up and Walk.
We are all here to help embrace you on your path to recovery.
Prayers,
Linda in Saratoga
Hello Jessica, I have been following your journey since our wonderful mutual friend, Nancy, told me about your going to Mexico for treatment. As I've read about you, I've been amazed with how many people deeply love you and are wrapping their arms around you with prayer. What an inspiration you are, Jessica....and what a warrior you are! And just think how you will have an abundance of compassion for your patients when you are a doctor...because you will understand their pain. Also, I wanted you to know that our church has a prayer list and will continue to lift you up in prayer. Joanie, from KY
Jessica,
My family and I are praying for you. I pray that with each day you get stronger and are able to walk. There is no doubt that you are such a special person. I look forward to seeing you :) Keep in the Faith, Crystal Ulmer
Hi Jessica,
YOu are in my thoughts and prayers for if not a speedy but a full recovery. Never give up hope because Jesus will carry you when you cannot take another step. Love Jacquie Linton
Dear Jessica,
You are in my prayers. Thank you for blessing me in what you said about being anywhere to talk to our Lord! Amen and Amen. May Jesus' arms be around you blessing you, healing you, giving you strength and showing you the way to Heaven. Bless your Mom too who cares so much about you!
Some of my favorite old hyms are:
Amen, Amen, Amen,
He's all I need,
Amazing Grace,
What a Friend we have in Jesus,
How great Thou Art.
Ask if anybody there knows, "De Colorus" Its a beautiful spanish song about all the Colors. Someone might be able to sing it to her in spanish if you think it is ok.
Praying for you Jessica in the fullness of God's Love.
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