Saturday, August 29, 2009

A NEW DAY HAS BEGUN.................

A POEM FROM DAD WITH LOVE

In between the shores of despair and tragedy is a ship called hope.
Jessica, so many times you have come perilously close to these destructive shores. And, each time the ship of hope has rescued you.
The captain of this ship is the Lord and its first mate is Mommy. I am simply an observer who is in awe of your strength and of your will to live.
And the sheer will of Mommy who has reached out to grab your hands every time you begin to sink.
Jessica, eventually the ship of hope will dock at the peer of life. And it is then that you will walk ashore with healthy legs surrounded by your loving family.

Love, Daddy


A MESSAGE FROM NITA IN MEXICO WITH JESSICA

The last two days have been nothing short of miraculous. Jessica has been unable to move for over 2 years. She has had to live in a totally black room and even then, required sunglasses and earphones due to her incredible sensitivity to noise and light. No one has been able to even touch her slightly without screams. I could go on and on about the hell that this kid has lived with – something no human being should ever have had to endure.

Yesterday was the 5th day of the coma and the ketamine was turned off but she was then put on Propofol. The intention was to allow her body to truly rest in preparation for a tough road ahead. Last night, although she was still asleep, she moved her legs!!! What is amazing is that her one leg has been in a full contracture for two years. She continued to rest through the night and then the Propofol was weaned this morning. She woke up and began to move her legs all over the place. Her left foot had “drop foot” which was believed to be permanent damage but it looks like it is resolved. She was extubated and has been breathing fine all day. She has continued to move all day. Early this afternoon, it was obvious that she wanted to talk. We had a board for her to write on and when we gave it to her, she wrote “I love you Mommy”. It was heart wrenching. Then she started talking. Her first word was SHIT. We all laughed. She then went on to say a million things and it was clear that she understood where she was and what was happening. The doctors were absolutely amazed. When the nurses came back in the room, she said “se hablo espanole??” She stopped talking for the rest of the day but then started again tonight. She has gotten combative at times and her strength is incredible. Sarah Gina and I have bruises but we are ecstatic that she has the strength to move in the way that she does. When she was really upset, Sarah Gina started to sing to Jessica and Jessica sang with her. She remembered every word from a song they used to sing when she was younger called “House upon a clouds”. It was a precious thing to watch.

This has truly been a day of “firsts” for Jessica. She listened to the music coming from my IPhone – something she has not been able to do for three years. She has socks on which has been too painful for her to endure for a long time. We were able to brush her hair. She shows no signs of being in pain and seems to be loving all that she can hear and all that she can see.

The road will not always be easy but there is no doubt that God is leading the way on this journey. I am pretty convinced that Jessica will be impacting so many other lives. She has already been an inspiration to every doctor, every nurse and every other person who has met her. But most of all, she has been an inspiration to the two other families whose daughters are still in their comas. They have seen Jessica’s miracle and can’t wait for their daughter’s miracles to also unfold.

God is alive and well in Mexico!!!

Nita

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

15 comments:

William said...

Gina and Jessica,

Thank god for the miraculous progress with a life time of more progress ahead.

Have a safe return home.

Kathy, Julia, and Bill

Marianne said...

WOW!!!!!!!!!!!!!This is incredible news! We are so HAPPY. Jess, I can't wait for the future updates on how you are doing in Med school!

Nancy said...

Lead On Captain God!!!

The shore is visable!! We are all watching and waiting for you Jessica as you arrive! You go girl!! Anywords you want to say...we want to hear!!! These notes from all who love you are like honey to our ears!

With love and great respect for all those little angels caring for you, aka Nita, Sarah Gina and the staff and new friends!
XOXO Nancy & Jose' aka Joe

Angel said...

Dear Nita, Thank you for writing! THIS IS INCREDIBLE NEWS!!! A MIRACLE HAS HAPPENED!!! Jessica and Gina, you are directly in the presence of GOD who has brought you through to this beautiful day!! Your constant faith and trust in the Lord, as well as that of David, Katherine, and Michelle, has also brought you through to this day. We are so very happy for you and are crying for joy! We will say many prayers of thanks for this MIRACLE!!!! We will continue to pray for Jessica in the next days as she opens this new chapter in her life!!!! WE LOVE YOU GUYS!!! THANK YOU GOD!!! THANK YOU BLESSED MOTHER!!! WE HAVE BEEN GIVEN A MIRACLE AND WE ARE SO THANKFUL!!! Love you always, Angel

Anonymous said...

Wow!!!!!! All I can say is God is so Big...we should all know that by now!
Keep up the great work Jessica, Mom & Nita...you obviously make a gret team!
Love & Healthy Blessings
Angela & family

Regina said...

OUR GOD IS AN AWESOME GOD!

Anonymous said...

Absolutely wonderful news - we thank God for this miracle.

With love & prayers,
The Turners

Anonymous said...

The Amazing story from Nita gave me chill bumps!!!!!! What a Miracle! Keep the Faith, Crystal Ulmer

Anonymous said...

Dear Jessica and Gina,
The Lord has blessed you and all who have been praying for you are so grateful! He will continue to bless you and keep you.
Love,
Linda

Anonymous said...

Jessica
I am on my way to Saturday Mass.
you will, as always, be included on the prayer list.
Please me gentle on Mom. She needs her strength to help you along the road.
Thank you Blessed Mother for all your love and support. Please continue to stay with Gina through these days.
love and prayers
Linda Maitna

Anonymous said...

Hi Jessica And Gina
Me God bless you both we love
Jimmy And Cecilia

Aunt Carol said...

To my dear sister and niece.... We cannot express in words how we feel right now. We are TRULY BLESSED. Keep fighting each day. This will bring you closer to coming home. Thanks to Nita who is there to help you and mom...she is a great friend. We love and miss you.. For now...good bye until we can be together again.

melinda said...

The POEM FROM DAD is just beautiful ! God bless you all !

Sheila George said...

Dear Gina & Jessica, You are in my thoughts & prayers.I Think of you all the time & pray for Jessica's homecoming.

Fondly,
Sheila George

Anonymous said...

You are and have been in my prayers Jessica as I have followed your journey on the internet. I have also have RSD for 6 years. God is great and hold onto the picture of Jesus reaching out to Peter in the ocean when he began to sink into the water as he took his eyes oof of Jesus. This piture has carried me through many tough minutes. Jesus loves you and you are a very pretty and strong woman.

Paul


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!