Saturday, January 30, 2010

The Christian Alphabet

Hi to All,

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

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

I found this poem on the internet the other day. Thought you all might enjoy it!
The Christian Alphabet

The Christian Alphabet Poem

A lthough things are not perfect
B ecause of trial or pain
C ontinue in thanksgiving
D o not begin to blame
E ven when the times are hard
F ierce winds are bound to blow
G od is forever able
H old on to what you know
I magine life without His love
J oy would cease to be

K eep thanking Him for all the things
L ove imparts to thee
M ove out of "Camp Complaining"
N o weapon that is known
O n earth can yield the power
P raise can do alone
Q uit looking at the future
R edeem the time at hand
S tart every day with worship
T o "thank" is a command

U ntil we see Him coming
V ictorious in the sky
W e'll run the race with gratitude
X alting God most high
Y es, there will be good times and yes some will be bad, but...
Z ion waits in glory...where none are ever sad!

Author Unknown


***Please keep the prayers going for Jessica today. She has been having a rough time with fighting the infections and with the increasing burning pain. The fevers are finally gone again, but she remains on antibiotics to be sure the infections stay away. She will probably be receiving another ketamine booster today with Dr. Cantu. Please pray for Dr. Cantu, Dr. Kirkpatrick, and Dr. Schwartzmann. These doctors have devoted their lives to this horrible disease called RSD. We thank them for all their tireless efforts into treating this disease and for all of their research into ultimately finding a cure for it as well. Also pray for all of the people that suffer their own trials each day with this illness. The above poem is dedicated to all people suffering with ill health today. Hang in there! God is in control!

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

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Thursday, January 28, 2010

"God Will Make A Way"

Hi everyone,

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

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


One of my favorite Christian songs is "God Will Make A Way".

Here are some of the words:

God will make a way,
When there seems to be no way.
He works in ways we cannot see,
He will make a way for me.
He will be my guide,
Hold me closely to His side.
With love and strength for each new day,
He will make a way -
He will make a way.......

You can hear a beautiful version of this song by Don Moen at:
http://www.youtube.com/watch?v=OhOjYR8UZT8


I bring up this song today because it has been the one song that has been constantly playing in my mind, over and over again. There have been so many times in these past four years with Jessica's illnesses that there has seemed to be "no way". And then, another day dawns, and with it, another door seems to open. These are the times when God makes his presence known to me, in ways that are too numerous to mention. He is an awesome God indeed!

Please pray for Jessica today. As her Mom and caregiver, it is my job to help her to see every day that God will make a way, somehow, some way......
She is currently still on antibiotics for the infection. It seems that for Jessica, whenever she has an infection, it causes her RSD to flare up and with that an exacerbation of her pain and neurological symptoms. Remember, her RSD was triggered by infection - Lyme disease - and so it makes sense that this would be the case for her. Dr. Cantu ("Green Shirt") returns today, for which we are so happy! Even though Dr. Luigi took good care of things while he was gone, it is comforting to know he is back. It's like in the game of football. You always want your "star" quarterback in the game, and you only rely on the "2nd string" when the "star"or "1st string" isn't available.

Remember - Where there is a will, there is a way!
Here's hoping that God will show you the "way" as well!

Till tomorrow,
Sarah Gina (Jessica's Mom)*

"But he knows the way that I take..." Job 23:10
"And now I will show you the most excellent way".
I Corinthians 12:31
"I am the way, and the truth, and the life". John 14:6

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Tuesday, January 26, 2010

PRAYING........

Dear Family & Friends,

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

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

This is the time in the early morning (@ 4:00 AM) that I have found is my most special prayer time with God. It is a quiet time, especially when you are in a hospital. As I look outside the window here on the 8th floor I can see such a stillness in the darkness. Even the mountains that have such a majestic appearance during the day seem to fade away in the darkness. There isn't any activity, except for the occasional passing car that appears on the road. It is during these quiet moments that I have had my most revealing and inspiring and moving "times" with the Lord. These "quiet" times when it is just me, God, and no one else!

As I begin these "moments" with God, I first thank Him for his mercy, his unending love and his amazing grace. I thank him for another day. I thank him for his continued blessings upon Jessica, my husband David, and my other daughters Katherine and Michelle. I thank him for watching over my immediate family, my friends, the doctors, nurses and also for all of you!

I then begin to pray. I start out with "special" prayers - for example - today was for all the people that have been affected by the earthquake in Haiti. I pray that they know that God has not forsaken them; that he holds them in the palms of His hands. That He will take care of them! I then offer special prayers for special people that I know personally who are facing their own private trials right now either with illnesses or other things. And I pray for God to watch over my family and friends and keep them safe and well!

I then get into the "serious" prayers - the ones that require immediate attention. Today they focus on Jessica and these pressing requests: For the infection to clear and with that the low-grade fevers, so that she can get off the antibiotics and continue the "small steps" towards recovery. For the burning pain she is experiencing to "quiet down" and go away - Now! For the few lesions that have resurfaced to go away. For her to continue to persevere with the knowledge that God is in control and his timing is perfect. For Dr. Cantu to return because things run smoother when he is here. For Dr. Rainbow, who won't be able to come every day as in the past, may she know how deeply Thankful we are to her for ALL she has meant to us. She has become like a "Grandma" to Jessica in more ways than one! Also, we pray for ALL of you - our God-given support system. It is all of you, along with your prayers and daily comments on the blog, that enable us to move forward every day - Thank You! Also, we pray for Fern Kwantes, a former coma patient, as she returns in the beginning of February for the much needed boosters she requires and can't obtain in Canada. And for Justin Brown, may his re-acclimation back home be smooth and uneventful. All these things I ask, in Jesus' name, AMEN.

In God's love, always
Sarah Gina (Mom to 3)*


"You have been distressed by various trials, so that the proof of your faith...may be found to result in praise & glory".
I Peter I 6-7

"When you pray, go into your room, close the door and pray to your Father, who is unseen. Then your Father, who sees what is done in secret, will reward you".
Matthew 6:6

Special thanks to Silvia who came on Sunday with a plate of homemade lasagna from the Union Church. She is a very special person and seems to always show up at the hospital when needed the most. (Thank you God for that).
Also, to Betty from Union Church who came by a few days ago with a book and a magazine to read. The people of Union Church, along with their Pastor David Long - are simply unbelievable - God Bless Them All!

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Sunday, January 24, 2010

"Pieces" of the Puzzle

Hi to All,

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

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


I will have an update on Jessica tomorrow.


Today is a happy and a sad day. It's happy in that today, our fellow RSD patient in Room 844 is finally going home. Justin Brown and his Dad left the Hospital San Jose Tec this morning to return home to Pennsylvania. Justin will be returning to the states to continue his road to recovery! Godspeed Justin & Rick!

Justin's Mom Joan and Dad Rick were the first persons I met when we arrived here in Mexico. I will never forget how happy I was to know that there were fellow "americans" here as well. Because they had already been here for a few months, they knew all the "ropes" and were so helpful to me in those beginning days on the 8th floor. They were the ones I went to for guidance and strength, especially during those days in the coma and in ICU.

Justin became known as the "Ice Pop Boy". This was the name that Jessica had given him because he was always asking for some of our ice-pops that we had brought from home. These are the ice-pops that come in a long plastic tube filled with liquid that you put in the freezer and they come in different flavors and colors. They became a favorite for all the coma patients on the floor as well - especially when word got out that we had them! We were glad to share them with all!

Yesterday, I presented Justin with the handmade "Ketamine Coma Bear" that I made as a farewell present to him. It is something that he can look upon to remember where he has been and to realize how far he has come - Enjoy the bear Justin!

I would like to take this opportunity to thank Rick Brown for ALL that he did for me to make my life and Jessica's life easier while here in Mexico. Words cannot adequately say "Thank-You" for all the help he gave to us. From going to the store, to bringing my laundry to the laundromat, to buying the coffee - and to most importantly - always being there to talk to as well! After the Emmanuels - Devon & Cathy - left, Rick became my special "messenger" in more ways than one - so THANK YOU - again Rick - for everything!

Also, let me say this to all who are battling diseases like RSD, Lyme, Cancer, Crohn's, etc. When you are faced with illnesses - it affects the patient in a very profound way physically. As their caregivers - it affects us in a very profound way emotionally. We are here with them 24/7 - trying to tend to their physical needs as well as their emotional needs. We are the ones that stand beside them and offer unconditional "love", "support", and "encouraging" words, when we ourselves are the ones who need these "encouraging" words at times as well!

I guess what I am trying to say is this: I have come to realize that when you are confronted with a major illness in your life or the life of your loved one - "We" - the caregivers, the family, the friends, the doctors, the nurses, EVERYONE, become a part of the "puzzle". Yes, we all are a "piece" of the puzzle! And it takes all of these "pieces" - all together - to finally complete the puzzle - and make it whole again! Everyone plays a "part", we all are a "piece" to the puzzle! The ultimate goal is to find that last "piece" of the puzzle --- the"healing" piece! It is then and only then that the puzzle is complete and all of the "pieces" that helped form that puzzle come together as one!

So, Godspeed to Justin, to his Dad Rick, and to his Mom Joan and brother Chris - who are waiting for him with open arms - to welcome him home! Let's hope that his final "piece" of the puzzle - his "healing" will be revealed really soon!!!

Here is a Poem for Justin, Jessica, Devon, Fern, Elena, Debbie, Lindsay, Kaci, Irene, Linda, Emily, Patricia, Shannon, Sue, Mary, Suzanne and everyone else who is battling this disease:

If you don't know where you are going,
then how will you get there?
VISUALIZE!
Make pictures in your mind.
See the destination.
Imagine your arrival.
Dream in perfect detail.
See yourself the way you want to be when you arrive.
See yourself arriving.
Make yourself a road map and study it every day
until you know the way and the destination by heart.


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

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Friday, January 22, 2010

God Gives Hope

Dear Family & Friends,

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

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


One of the great themes of Christianity is hope - triumphant hope. Not just hope as in a distant dream, but triumphant hope - the kind of hope where all things end right. It is this hope that brought us here to Mexico in the first place. The hope of a better life for Jessica. In the midst of all the struggles and challenges, all the storms and sufferings, we can advance our thoughts beyond today and see relief.....see the triumph.....see the victory! Because --- in the end, God does indeed win! Jessica's journey of hope will ultimately prevail!

Please continue to pray for Jessica. These past few weeks have definitely been a struggle for her, physically and emotionally. Please pray for the fevers and infections to stay at bay and with that the pain to be lessened. Please pray for her to continue taking the "small steps" of hope towards the ultimate victory. As I have said before, our journey is a day to day one. We know that with God all things are possible and in life, you have to realize that the things that are worth waiting for take time to reveal themselves, but they will - that is our hope! We have seen the progress made here, we have seen the miracles unfold. We know that it took time for her to get ill - it will take time for her to get better. God is in control!

As Linda from Indiana wrote in one of the comments on the blog for Jessica's birthday -

"I too have RSD/CRPS which has spread full body. While helping my doctor research the timing of ketamine boosters for my outpatient protocol, I came across your story. It came at a point where depression had taken hold and your faith, as well as your mother's, turned my eyes back to Jesus.

No matter how much physical healing I ultimately get, I praise Him for the spiritual healing going on in me each day despite the pain. To see someone like you also in so much pain who has touched so many people, to me this is a miracle...like your eyesight, your movement in your legs, your healed sores, your medical team in the right place at the right time, etc.

And I KNOW, as your mother has written, that there is much more in store for you, and me, and all the others suffering from this disease." ... Linda, from Indiana

Thank you Linda for those beautiful words for Jessica. They meant so much to her and me as well! You are a stranger that has now become a friend. May Jesus heal you as well!

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

"For you alone have been my hope, my Lord, my confidence since my youth" Psalm 71:5
"I am the Lord your God, who upholds your right hand, who says to you, "Do not fear, for I will help you". Isaiah 41:13

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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!