Sunday, September 20, 2009

Birthday Blessings & Update on Jessica

Hi to All,

First to Michelle:


Dear Michelle,

Jessica and I want to send this special birthday shout-out to you!!! Who would have ever thought you would be getting a message all the way from Mexico for your special day! I miss you so much and I want to tell you how very proud I am of you and how you have matured so much these past few years while Jessica's been ill. You have had to deal with alot of things; more than anyone your age should have to! But, you have shown me how much you love your sister "Wessie" and how you would do anything do get her better. Even though you are now 13, and a teenager, you have had to behave and deal with things far beyond your years - and I am so very proud of you! Jessica says she loves you very much - more than you know! I love you from the bottom of your little toes to the top of your beautiful head and all around the world - that's how much!!! Remember this: God is in control, God is Good, and God loves you so! So Michelle, Hang in there a little longer. Mommy will be coming home real soon with a healthier Jessica and then you, me, Daddy, Jessica, and Katherine will be a "normal" family again!!! I promise you that with the certainty of a mother's love and Jesus that loves you so!!! Happy 13th Birthday "Mooshie Mae"!!!


We have hopefully uncovered the reason for Jessica's unrelenting symptoms. One of the top neurologists - Dr. Ramirez- has been brought on the case by Dr. Cantu. We have isolated a medication that may be causing the problem. We have to wait 24 - 48 hours to see if the symptoms start to improve! Keep her in your prayers and the doctors as well! I will keep you posted as always. It has been a very difficult time, to say the least! But I am hopeful that it will be resolved really soon!

Also, special thanks to Dr. "Rainbow"(aka Dr. Zavala) I will tell you an interesting story about her in a following blog!

All my love,
Jessica's Mom

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


Nancita said...

Happy Birthday Michelle!!! All of your Blogging Friends love you too!! Have a very special day knowing "the girls of Rm 844" hold you dear to our hearts!!!

Love to Jessica and Mommy too!!
Nancy, Joe and Mr. Tinker-Woof Woof

Aunt Rosie and Aunt Elena said...

HAPPY BIRTHDAY MICHELLE! I remember when your mom was in the hospital for you before you were born, I got her a t-shirt that had an arrow pointing down to you. She immediately put it on. She told me that they would give her orange juice when they wanted to check up on you, as this would wake you up. Hard to believe it was 13 1/2 years ago. Aunt Elena wishes you a happy b-day too. Sarah and Jessica, We are praying constantly for you. You are a priority in our thoughts and prayers. We love you.

Anonymous said...

Happy Birthday Michelle. Prayers from here in KY. You have a special birthday. God gave us many famous people on this day. I have no doubts you too will find that special talent. God be with you all.

Jane M. said...

My sister Jodi Lepp told me about Jessica's story & it truly touched my heart and certainly puts life in perspective. My thoughts and prayers are with Jessica and all of you who love and care for her so much. May God work through all the doctors and nurses to bring Jessica back from this horrible disease so she may realize her dreams of becoming a doctor and have a long & healthy pain-free life.

Anonymous said...

Happy Birthday Michelle! I know Daddy & Katherine made this a nice Birthday weekend for you.

Positive thoughts, love and prayers across the miles to Sarah Gina to Jessica.

xxoo Carol & Ray

AUNT CAROL said...

Happy 13th Birthday Michelle...we love you and miss you very much. When we are all together wewill celebrate every birthday and holiday that we missed spending together. We are praying that the doctors can figure out what is causing Jessica so much difficulty. We hope and pray for relief...please....Love you AUNT CAROL

Marianne and Rob said...

Happy Birthday Michelle! I hope you have a wonderful day! Send love and hugs to your dad and Katherine from your VA family.
Jessica and Gina..always in our hearts and prayers. Wishing you sweet dreams and rest :-)
Love, Marianne and Rob

Anonymous said...

Dear Jessica

On Friday morning Roger and I awoke very early to take care of his mom(93). Afterwards Roger asked me why I was crying. I told him I could feel your pain and I was worried that you were in too much of it. I thanked God for my little bit of pain hoping that for the short time I was in pain you were not.
I was in an non computer zone for a few days and I missed hearing about your progress. But I didn't forget you in my prayers.
Hoping each day you are in less pain.
love to you Jessica and Gina
Saratoga Maitans

Michelle - Happy 13th. Lucky 13, the year that big sister comes home.

uncle vinnie said...

Happy Birthday Michelle, Your a teenager ,WOW. Hope you have a great day. Special Prayers for Jessica . Rest and pleasant dreams for both Sarah and Jessica . Love Uncle Vinnie and Aunt Judy

Angel said...

Dearest Jessica and Gina, Our rosary group met for the first time of the school year on Friday, and we have you at the forefront of our intentions. I think about you and pray for you all the time. My prayers are reaching out to cover you like a light warm blanket that will keep you warm and comfortable. My arms are reaching out to give you a hug that never ends. I will keep praying every day for you. You are always in my thoughts.... Love, Angel

Anonymous said...

Happy Birthday, Michelle!!!! Crystal Ulmer

Anonymous said...

Dear Sarah Gina & Family,

Just want to tell you I'm thinking about you & praying Jessica is better very soon.I pray every day & check your blog every day as well.I hope you are okay,I worry when there is no post But realize how crazy your days must be.
Peace & Blessings,
Jodi L

Anonymous said...

Continued prayers for your recovery. You are in my thoughts. I pray also for your dedicated doctors. Love, Nancy Ernenwein

Nancy for Sarah Gina said...

Dear friends of Jessica and Sarah Gina. I spoke with Sarah Gina yesterday and know that the internet is not working where she is so know that she will write the moment she can!! So I'll ask, for them, to continue sending those wonderful prayers and comments. You are all so special to all of us.
love Nancy

Regina said...

Happy Birthday Michelle! Your thirteenth year is a special one!
Prayers continuously go out for Jessica and her doctors so that she will resolve all current issues immediately! We are all behind you, David and Gina!

Rosalie said...

Dear Gina and Family, My prayers and thoughts are truly with you. May God continue to give you all the strength and courage to keep fighting. God Bless

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!