"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." ~Jeremiah 29:11~
Saturday, October 31, 2009
Happy Halloween from Monterrey!
Hola from Mexico,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Today is Halloween and the holiday is celebrated here in Mexico as well. The children wear costumes and go from house to house for candy treats, but, unlike the USA, they do not say "Trick or Treat"; they say "Halloween, Halloween!". Jessica is going to wear a "green shirt" and dress up as Dr. Cantu, and I am going to wear a hospital gown and dress up as a "ketamine coma patient!" (You have to do something to not go crazy, especially after being in a hospital for 2 1/2 months now!) I understand that my daughter Michelle in N.Y. is dressing up as Bazooka Bubble Gum and my older daughter Katherine, who is away at college, is dressing up as a policewoman, and her boyfriend Paul is going as a prisoner.
Update on Jessica: Sorry I didn't blog yesterday. Jessica was running low grade fevers and so cultures were drawn on her J-tube site. Today the fevers seem to have stopped, thank God! Jessica received another ketamine booster and so we continue on the path of "small steps", as Dr. "Green Shirt" always says! She is still experiencing troubles with her vision, or "static vision" and last night we had a special visitor who came to say some special prayers for Jessica's vision to return! I will tell you more about this in an upcoming blog.
We ask for continued prayers for Jessica's healing and restoration of her sight. Please pray also for her fellow coma buddy - Devon - as she had some mouth surgery performed yesterday and is experiencing some difficulties with her healing as well. We have gotten very close with them since we have both been here for the same amount of time, and even though our paths to getting here are very different, these two young ladies - Jessica and Devon - fight hard each day to try to get back to some semblance of a "normal" life - free of RSD and of all of the symptoms it causes!
So, go out today, and have fun "Trick or Treating" and handing out candies to all the children in their costumes! Life is all about living and making all of those memories that come to mean so much! May God bless you all and keep you safe in his care!
"The Lord will keep you from all harm - he will watch over your life; the Lord will watch over your coming and going both now and forevermore." Psalms 121:7&8
From Monterrey, with love,
Jessica's Mom
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Thursday, October 29, 2009
Over 18,000 Views of Blog!!!
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Upcoming Fundraisers in Naples, Fl:
Wed. - Nov. 4th - 4-9 PM
@ Tropical Smoothie Cafe
Pineridge Rd. & Airport Rd.
Naples, Fl.
"Great Food for a Great Cause"
Also:
Thur - Nov. 5th - 5PM
@ Uno's
Vanderbilt Beach Rd. & Airport Rd.
Naples, Fl.
"Bling" Happy Hour - Sip & Shop"
Special Drink to be Served:
"MONTERREY VERVE SUNSET"
Call Nancy @ cell-(419)350-9058 for Details
Update on Jessica:
Jessica is continuing to try to work on the "small steps" she needs to take while here in the Hospital San Jose Tec de Monterrey. We continue with the boosters she needs for the RSD pain and also the other rehabilitative steps needed for her journey to a better functioning life. The "little" things that when you are healthy you take for granted. Such as: we are trying to gradually each day raise the head of her bed in small increments so that she can go from a laying down position to eventually a sitting up position - something she has been unable to do for quite some time now. It involves putting cushions to support her head and neck and also her own body trying to be able to not have that "vertigo" feeling you get. It is something that is going to take time and effort and patience - a "re-training" of the brain! Jessica is a fighter, as you all know! With your prayers, her determination, and God's divine help - we will eventually see the light at the end of the tunnel!
ALSO - I would like to send out Special Birthday Wishes today to Chyo! She is Dr. Zavala's (aka Dr. "Rainbow's") special cook and helper. She has been with Dr. Zavala for many, many years and she has been helping her to cook and puree and make such delicious things for Jessica - such as homemade applesauce (from the apples grown here in Saltillo, Mexico); lentils, pureed chicken, and egg custards, to name a few!
**Feliz Cumpleanos Senora Chyo & Muchas Gracias Por Todo Que Tu Haces Para Mi Hija Jessica --- Con Mucho Amor, La madre de Jessica, Sarah Gina**
"For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me..." Matthew 25:35
In God's love, always,
Jessica's Mom
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Wednesday, October 28, 2009
Ketamine Booster Today - #9
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Hi to all,
http://www.youtube.com/watch?v=PW_vstm0bS8
UPDATE ON JESSICA:
Today Jessica will be receiving another ketamine booster (#9) and we are thankful for the continued forward movement in her treatment. While she is undergoing the booster, Dr. "Green Shirt" will be putting a new anesthetic into her implanted pump in order to help with her treatment here as well. She is experiencing some pain with her J-tube again, so it is our hope that we can increase her intake by mouth and eventually get rid of the J-tube all together. For now it has to stay; as it is our "safety" in case she can't continue to tolerate adequate feedings.
For all of you that know me, you will be happy to hear that I was able to go outside and go to the local store (H.E.B.), which is like a Stop-n-Shop or Publix, with Cecilia while she was here. This was my first time out of the hospital since we got here! We hopped in a green cab and it felt great to be out, but also a little wierd as well. Dr. Cantu was giving a booster to Devon, so Jessica felt safe enough knowing he was right next door, and Devons' mom stayed with her while I was gone for the hour! Originally Dr. Rainbow was going to stay with her, as she is the only one that Jessica says she will stay with, but the other hospital where she works, had a very complicated serious case, and she was desperately needed there! Please pray for the little 7-month old baby girl who received a gunshot wound to the head and her mother as well! Thank you!
Thank you again for all your continued prayers for Jessica and her healing.
Remember:
LIVE YOUR LIFE FOR GOD, AND HE WILL BLESS YOUR DAYS!!!
All our love,
Jessica's Mom
***To Post a comment, CLICK on Comments below***
Tuesday, October 27, 2009
A "Special" Message Sent to Jessica !
Hi everyone,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Special thanks go out to Carol Biron, Nancy Sustersic, Karin Daniels, and all of Team Jessica for a job well done at the Princess House Fundraiser last Saturday in Naples. Jessica says thank you all for all the hard work put in - she loves you all!
Jessica received ketamine booster #8 yesterday. With each booster we continue to see the "small steps", as Dr. Cantu always says, that she needs to take on this journey here in Monterrey, Mexico. Most boosters take about 2 hours and everyone responds to them differently and each patient requires different doses - it is what Dr. Cantu knows the best and it is amazing to watch him "at work" with his coma patients! We love and admire Dr. "Green Shirt" for his work with RSD.
Yesterday, I spoke about a letter that Jessica received from Marco Island, Fl. I contacted the family to be sure that they wouldn't mind if I shared it with all of you. They were delighted to have me write about their "journey" as well. Olivia heard of Jessica's story and decided to write to her. Here are some excerpts of her letter to Jessica:
Dear Jessica,
My name is Olivia Davis. I am 11 years old and live in Marco Island, Fl. My Mom read me your story and I feel sad that you have had to go through all that and are still having to. I had a rare brain disease and have gone through 5 brain surgeries to try and help stop my seizures. I was 7 when I got sick. Last April I had a big surgery and I was paralyzed on my entire left side. I had to learn how to sit up, stand, walk, and move again. I spent all summer in therapy and trying to do homework. Sometimes I felt like I would never get better and sometimes I felt like I could do anything I used to if I just put my mind to it. I focused on the positive stuff like I would get better and get the seizures out of my life. When I was sad or down I talked to my Mom and she would hug me. That made me feel more positive. I am in 5th grade now and I love being back at school. I even learned how to swim again.
Keep thinking positive and soon you will get what you want. Be hopeful, not doubtful. I hope you get better soon. Our prayers are with you.
Peace out, Keep on dreaming.
Olivia
What an amazing letter from an 11 year old who has had to face her own trials as well! Jessica was so touched by her letter! We can't wait to meet her when we return to the states. Our prayers go out to Olivia and her family as well for continued recovery from Rasmussen's Encephalitis. You can visit her website at: www.oliviadavisfoundation.org.
This is a special "Shout Out" to Olivia who reads Jessica's blog!
Remember this Olivia - It takes 2 --- GOD & YOU --- so keep fighting because You are stronger than any illness and God loves you so!!! The Lord says:
It's worth It. / Walk with Me. / Trust Me. / Wait with Me. /
I WILL REWARD YOU!!!
All our love,
Jessica's Mom
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Monday, October 26, 2009
Help From NY Arrived Yesterday!!! 2,000 Views of YouTube!!!
Hi to all,
VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Yesterday was an eventful day as we welcomed our dear friend Cecilia to Room #844 in Hospital San Jose Tec de Monterrey. As you may know, she is originally from Colombia and speaks fluent spanish, so she is going to be really helpful in getting us different things that we need. She brought along with her goodies from home, get well cards from the Naples fundraiser and a get well sign-in book from the Garden City fundraiser, as well as presents from some of our friends! She also brought along a special letter to Jessica which I will share with you as soon as I know it's OK with the family that sent it. It is nice to see a familiar face here in Mexico and to have her companionship as well!
Today, Jessica is scheduled to receive another ketamine booster to help alleviate some of her symptoms and to also continue the progress in the movements of her legs. These boosters are essential post coma and necessary to reducing the pain associated with RSD and for healing the body as a whole! Dr. Cantu would also like to do an MRI of her brain to rule out certain causes that are still plaguing her in regards to her constant "headaches" that she is still experiencing. We ask for continued prayer for her vision to be restored to normal as quick as possible!
I would also like to personally thank Gloria from Union Church for bringing over some books, cards, magazines and a fan for the room, and also Sylvia for always bringing special prayers & also goodies from Lety's - a really delicious bakery or "panaderia" here in Monterrey.
Also, Jessica and I had the pleasure of meeting someone very special to our dear Dr. Rainbow -- her husband, Dr. Zavala! He came to see Jessica on Saturday and we were honored with his visit! We had heard so much about him and I must say he is a very spiritual man; highly intelligent, most sincere, and also funny at times! He is a genuinely nice man and they make a very nice couple! They had stopped by after mass and before meeting up with some friends to say hi! I thanked him for "sharing" his wife with us - as she has taken a very special interest in Jessica and I must say the feeling is mutual! There is a very special love between them. Jessica looks forward to her visits everyday and she really feels that Dr. Rainbow is her special "angel" from God! Her love is felt in everything she does and she is like family to us, more than words can ever say!
So today - let us thank God for those special "friends" that are always there for us and those who become so much more than friends - those that become our "family"!!!
"Greater love has no one than this, that he lay down his life for his friends." John 15:13
"A friend loves at all times..." Proverbs 17:17
With all our love,
Sarah Gina (Jessica's Mom)
*** To post a comment, CLICK on comments below ***
Saturday, October 24, 2009
Ketamine Booster #7
Hi everyone,
VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Sorry I was so late to blog today. Jessica's doctors were all in this morning and Dr. Cantu decided to give her another ketamine booster (this is #7) - we are trying to make up for lost time due to the infections and other setbacks that she has been experiencing. We are happy that things are moving forward and we remain hopeful in not only the doctors' plans for Jessica, but mainly in God's divine plan that is in our hearts and minds every minute of each and every day!!!
I am very happy that in less than 24 hours, my dear friend Cecilia Arango will be arriving to help us for a few days and bringing with her love, support, companionship and goodies from the USA! I have known Cecilia for many years (over 23) and she has been always there for me in so many ways. I would need alot of space to tell the story about Cecilia and I. I will tell you this one thing - when I first returned back to NY from Naples with Jessica over 3 years ago - to see doctors for the Lyme disease & babesiosis - it was Cecilia and Jimmy who opened up their house to us and took care of us! We lived with them for 8 months and during that time, because they both speak spanish, I began to remember all the spanish I had learned in HS and college. And, as I have said before, God does ultimately have a plan for all of us because it is that spanish that I am currently using here in Mexico that has enabled me to talk with the nurses here in the hospital! God is good indeed!
Can't wait to see Cecilia!
P.S. I would like to express my condolences to one of my best friends - Paulette DeFelippe - who lost her sister Helen to a very rare type of cancer yesterday. She was only 49! I am praying for you and your family!
In God's love,
Sarah Gina (Jessica's Mom)
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Friday, October 23, 2009
17,000 Views of Blog!!! 1,700 Views of YouTube!!!
Hi to All,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
*****FUNDRAISER TOMORROW*****
Princess House Fundraiser For Jessica's Journey
This Saturday - October 24th - 2:00 - 4:00 PM
Indigo Lakes Clubhouse - Naples, Fl. 34119
RSVP - Carol Biron - (239)304-7589
or e-mail: cbiron123@aol.com
Donations can also be made to: Jessica's Journey Savings Club
And sent to: Carol Biron-14505 Indigo Lakes Circle-Naples, Fl.34119
UPDATE ON JESSICA:
Jessica is continuing on an upswing with no fevers, better blood pressures, better liver levels, and just still currently on the anti-fungal IV for the infection. God is good! She received a ketamine booster yesterday (#6) and the movements in the left leg continue, as well as the slight muscle movements in the right leg. We are encouraged by these small steps in the right direction and we can't wait for the day when the right leg is straight and both legs move freely once again! That is the hope and the plan for us here in Mexico!
Please continue to pray for Jessica's healing. Please pray also for her sight to be restored quickly. Also, pray for Jessica's fellow "coma" buddy - Devon - that she may get well soon as well!
*****SPECIAL THANKS to all the Doctors here at Hospital San Jose Tec de Monterrey - it is "DOCTOR'S DAY" - and we want to thank them all for the great job that they do here, each and everyday!!! Thank you Dr. Rainbow, Dr. Green Shirt, Dr. Luigi, Dr. Romulo&Remus, Dr. Medusa, Dr. Cynthia Lyme and all the doctors around the world = Love and Thanks - always!!!
Funny Story: Yesterday, Dr. Romulo(aka Ramirez) the neurologist came to see Jessica. He began to tell her the "dream" he had for her. He asked her if she knew of Martin Luther King Jr. and his "I had a dream" speech and he began to say that his dream was of her, walking one day, on the beautiful beaches of Tampico, Mexico. I then told him that it was interesting that he chose Martin Luther King Jr. - and he asked me why? - I told him because that was the day that Jessica was born - on Martin Luther King Jr.'s birthday - January 15th!!!
Another interesting story!!!!
T.G.I.F.,
With love,
Sarah Gina (Jessica's Mom)
***To post a comment, CLICK on Comments below***
Thursday, October 22, 2009
What is LOVE?
Love to all,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
*****UPCOMING FUNDRAISER FOR JESSICA*****
Princess House Fundraiser For Jessica's Journey
This Saturday - October 24th - 2:00 - 4:00 PM
Indigo Lakes Clubhouse - Naples, Fl. 34119
RSVP - Carol Biron - (239)304-7589
or e-mail: cbiron123@aol.com
Donations can also be made to: Jessica's Journey Savings Club
And sent to: Carol Biron-14505 Indigo Lakes Circle-Naples, Fl.34119
*************************************************
Jessica is currently off of antibiotics, but remains on an IV anti-fungal medication for an infection. She is still experiencing the same problems with her vision, but we are faithful in prayer that it will be restored to her, and that the "static vision" will be gone! She continues to be able to have more movement in the left leg and a little muscle twitching in the upper part of the right leg! This happened after she received her ketamine booster two days ago! Dr. "Green Shirt" (aka Cantu) said she may receive another one today!
We ask for continued prayers for her eyes and for more movements in the legs! And also, for her headaches that have not been able to go away yet!
I thought I would talk about what Love is. In the bible in I Corinthians Chap 13, it talks about love and it goes on to say that of these three - Faith, Hope & Love - the greatest of these is LOVE!!! I came up with this for what Love is:
Learning
Our
Value
Everyday
I think if we learn to love one another we can be happy. It's as simple and as difficult as that. Love comes in many different forms. The love of your mother is the first "real" love you feel when you come into the world. It is like no other, besides that of the love of God. Then, as your life goes on, you acquire different types of love. The love of your father, your sister, your brother, grandparents, aunts, uncles; the love of your family. Even after that, you then obtain love from friends, neighbors, church and even strangers and pets! And then, even later, you are blessed with the love of a husband or a wife! With all these "loves" you realize thru them what you are worth to them and their worth to you as well! As a famous person, Franklin P. Jones once said: " Love doesn't make the world go round --- Love is what makes the ride worthwhile!!!
So today, we send our love out to you all of you! May the love you give out come back to you in abundance! As it says in Hebrews Chap. 11 - "...abundance as numerous as the stars in the sky and as countless as the sand on the seashore."
In God's Love, always,
Jessica's Mom
***To post a comment, CLICK on Comments below***
Wednesday, October 21, 2009
Ketamine Booster #5!!!
Hi everyone,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
*********************************************************
*****UPCOMING FUNDRAISER FOR JESSICA*****
Princess House Fundraiser For Jessica's Journey
This Saturday - October 24th - 2:00 - 4:00 PM
Indigo Lakes Clubhouse - Naples, Fl. 34119
RSVP - Carol Biron - (239)304-7589
or e-mail: cbiron123@aol.com
***Great opportunity to do some early Christmas shopping and have a Fun afternoon - winning prizes as well!!!***
***All proceeds will be donated to Jessica's Journey Savings Club***
*************************************************************
Just wanted everyone to know that Jessica's fevers are finally gone, but she continues to stay on the antibiotics and the anti-fungal medication for the infections. Because the fevers had finally broken, Dr. Cantu made her day yesterday and surprised her with a ketamine booster. (her last one was over 11 days ago due to complications) This is ketamine booster #5 for Jessica and with each one you can see little signs of improvements, those little positive things that encourage her and me and the doctors as well, to keep moving forward - as we must and as we will!!! One of my best friends, Angel D'Antonio, from N.Y. wrote this yesterday in the comments on the blog:
" It is like you are in a car and God is the driver. He is taking you on a trip where only He knows the road. He is taking you up steep mountain roads and into dark valleys and around some hairpin turns. Keep hanging on! You know with your heart and soul that God knows the road and will keep you safe. Yours is the kind of faith that moves mountains and invites miracles".
How true these words are for this journey that Jessica, and that we, as a family, have been taking with her. God is the driver, she is the passenger! God is the pilot, she is the co-pilot! If we can all remember that in our everyday lives, how much easier it could be for us. But, somehow, life and all of its' problems can sometimes get in the way, and we lose sight of the road; we sometimes want to take a different path - we are human and we make mistakes! It is at those times, we have to remember Jesus and the path that he Had to take for Us, and how thankful we are to HIM for taking that road!!! Amen.
In God's path, always,
Jessica's Mom
***To post a comment, CLICK on Comments below***
Tuesday, October 20, 2009
2 Months In Mexico!!!
Hola from Mexico,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Can't believe we have been here in Mexico for 2 months - what a journey it has been! I remembered how it felt when we first got here. There were so many different emotions going on. From nervousness to hopefulness, from scared to excited, for the road already traveled - to the road up ahead - it has been an amazing quest for Jessica! She is definitely the strongest person I know and I am so proud of how she has handled everything she has had to endure and so much more proud to be called her Mom - I have been truly blessed by God indeed!
Jessica is currently still having fevers and is on two antibiotics and an anti-fungal medication for the infections. She is still experiencing low blood pressures and the "static" vision is still plaguing her as well. She describes it as looking at a TV that is having a bad connection and all you see is the "static" on the screen. We are hopeful that, in time, her vision will be restored, that the infections will clear, the liver levels will stabilize, and that then we can resume the ketamine boosters that are so necessary for her treatment here in Mexico!
The following was written for Jessica by her 13 year old sister Michelle and was sent to her via the blog:
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Hi Jessica, it is Michelle, I just wanted to say hi and that I miss you..I also wrote you a poem in creative writing...
JESSICA
My loving caring sister-
2 years old...
I couldn't say Jessica
I called her Wessie
She is pretty-
brown hair
green eyes
a bright smile
a warm heart
She sometimes gets on my nerves
the BIG sister
getting attention
born first
the favorite
She is my best friend
hide and seek
board games
I love her because...
she is my sister! - What a lovely poem to mark this 2 - month anniversary here in Mexico. I must say that we, as a family, could never have imagined taking a journey like this! Who would have ever thought that we would have to travel to Mexico for an experimental ketamine coma study to try and rid Jessica of the horrible burning pain that is associated with RSD! The doctors, especially Drs. Cantu, Kirkpatrick, & Schwartzman, who have devoted their lives towards this illness, and the people of Monterrey, have been so amazing! We are forever grateful to them for giving us this chance at a life for Jessica and all the other coma patients as well! We are determined, even with all the setbacks, to remain on the path to wellness, that God has laid out for us! Stay well and remember - Never Give Up!!!
With love,
Sarah Gina
(Jessica's Mom)
***To post a comment, CLICK on comments below***
Monday, October 19, 2009
GOD Has a Plan.....
Hi everyone,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Just wanted to thank you all for your continued prayers. Jessica's high fevers are thought to be due to a catheter infection and so she was brought down to surgery to remove the catheter and implant another one on the other side of her chest. At the same time, just to play it safe, she was tested for influenza, and thank God that came back negative. Due to the infection, though, she will be put on two different antibiotics. It certainly has been a week of weeks!
But, even through these problems with unexpected infections this week, there is and always has been one "constant" strength, one undeniable force, who watches over her and gives her the "armor" she needs to keep pushing forward and to ultimately win this battle - that "strength" is of God, our Lord and Savior! His word and His plan is oh so powerful!
We had a very special visitor that came to see Jessica tonight. Our dear Dr. Rainbow (aka Dr. Zavala) brought her son, Luis, who is a priest, to visit with her! We were so honored with his visit. He was a private secretary for five years to Pope John Paul II! He is such a gentle man; very soft spoken, very smart, very genuine. When he entered the room you could feel the special warmth that only comes from being a true man of God! Currently his work brings him to Monterrey every few weeks, so he has said he would like to come back again to talk to her. His message was simple and loving - for Jessica to have the hope in HIS word, to keep fighting no matter what, and to remember that God does have a plan for all those who believe in Him! In the short time that we have come to know Dr. Zavala, she has made us feel like a part of her family as well! We are so thankful to God for her and her family!
"FOR I KNOW THE PLANS I HAVE FOR YOU, DECLARES THE LORD, PLANS TO PROSPER YOU AND NOT TO HARM YOU, PLANS TO GIVE YOU HOPE AND A FUTURE"!
Jeremiah 29:11
In God's plan,
Jessica's Mom
*****UPCOMING FUNDRAISER FOR JESSICA*****
Princess House Fundraiser For Jessica's Journey
This Saturday - October 24th - 2:00 - 4:00 PM
Indigo Lakes Clubhouse - Naples, Fl. 34119
RSVP - Carol Biron - (239)304-7589
or e-mail: cbiron123@aol.com
***Great opportunity to do some early Christmas shopping and have a Fun afternoon - winning prizes as well!!!***
***All proceeds will be donated to Jessica's Journey Savings Club***
**TO POST A COMMENT-CLICK ON COMMENTS BELOW**
Sunday, October 18, 2009
Special Sunday Prayers Needed!!!
Hi to all,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
We need special Sunday prayers today!!! It seems that today is going to be another one of those days of struggling!!! Jessica was not feeling well yesterday and was saying that her head hurt in a different way and that she felt very achy, hot and then cold, etc... She began with low grade fever which quickly jumped to a fever of 104.3!!! Dr. Cantu was called and blood cultures were done and we await their results. Is it an infection in her catheter or something else??? I will keep you all posted.
Please pray extra hard today as you go to church or your houses of worship for my sweet Jessica! Pray for the answers to the fever, for the fever to lessen, and for the symptoms she is experiencing to abate quickly! Also, please pray for easier days for her; she needs them and oh so deserves them so!!!
Faithful in Prayer and in God's love always,
Sarah Gina (Jessica's Mom)
"Your light shall break out like the dawn, and your recovery shall spring forth quickly!" Isaiah 58:8
***To post a comment, CLICK on comments below***
Saturday, October 17, 2009
Jessica Is A Fighter!
Hi everyone,
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Sorry I didn't blog yesterday. Jessica has had her share of struggles that she has had to deal with, not only since we have been here in Mexico, but also for the past four years dealing with Lyme disease and all of its multiple complexities, and RSD with all of its debilitating and painful symptoms! But Jessica is indeed a fighter and she has somehow found the strength to deal with every obstacle that has been thrown at her! I don't know if I could have endured what she has had to endure. Quite frankly it has been too much for one person to have to bear!!! Added to the struggles of this past week, we are currently dealing with her bloodwork which has revealed elevating liver levels which have been going up for some time. To try and figure out what is causing it, the doctors have had to slowly eliminate all medications to see if any of them are the source. Yesterday, the last few that were remaining were stopped to see if that was the culprit. As you know, the liver is very important and many factors can be causing these high levels. We are awaiting todays results, but it is concerning for us and the doctors as well due to the high count.
Please pray for Jessica today and ask God to help her to, as he has these past four years, to face and deal with this new struggle. God is our fortress, our strength, his love endures and never fails! Pray a special prayer for her today and also pray for her fellow coma patient that is still here as well - Devon Emmanuel from Connecticut. Devon had a little mishap yesterday, as she apparently was sleeping in her bed and fell out of it onto the floor! I ran to the nurses station and I never saw them run so fast! She is allright now and didn't get seriously hurt, but she too has had to deal with her own set of struggles. So pray for these two young woman today!
"GOD IS OUR REFUGE AND STRENGTH, A VERY PRESENT HELP IN TROUBLE" Psalm 46:1
In God's love, always,
Jessica's Mom
P.S. Our two favorite doctors are back from their trips - Dr. "Rainbow" and Dr. "Green Shirt" and we are so happy and also so comforted as well!
P.S. I gave Dr. Green Shirt (Cantu) a present that I made for him while he was gone. It is the first of its kind and it became my therapy while going thru these obstacles with Jessica to come up with the design and put it together. It is called:"Future Ketamine Coma Patient". It is a bear stuffed animal that I dressed up in a childrens hospital gown, applied tubing, medication bottle, and "ketamine" stickers to it --- everyone in the hospital that came into the room - loved it!! I have now been commissioned to make some more for the other doctors as well! For those of you who know me, you are not surprised that I have come up with this idea, but to those here, they feel I have found a lucrative business venture!( or maybe they think I'm a crazy americano) I guess, as a Mom that is here with her daughter, just as Cathy is here with hers, you have to find some outlet, something different to focus on besides the sickness, or you can go crazy some days!!! As soon as I can figure out how to put pictures on the blog - I will show you all "Future Ketamine Coma Patient Bear"!!!
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Thursday, October 15, 2009
16,000 VIEWS OF BLOG!!! 1,000 VIEWS OF YOU TUBE!!!
TO VIEW JESSICA ON FOX TV - CLICK ON LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Hope this day finds you all well. Jessica continues to face each new day and the challenges that the day brings with it. Today she had to once again have a procedure in ICU under sedation. The gastroenterologist, Dr. Morales, feels that the slow motility in the intestines is sometimes seen in RSD patients due to the nature of the illness, and so, the procedure was performed to alleviate some of the symptoms she was experiencing! She continues on the antibiotics for the J-tube infection and we await results of her bloodwork to see if she can receive her ketamine booster #5. Dr. "Green Shirt" returns from his pain conference today and we are happy for his return. He has such a heart for RSD and the coma patients here. He genuinely wants your "miracle" too, and he trys to make it happen as well! He does "run the show", so to speak, so his absence is definitely felt! That's not to say that Dr. "Luigi" isn't great, because he is, but there is a sense of comfort when the "boss" is around!
Speaking of doctors, we recently heard from two of Jessica's doctors in N.Y. Her pain doctor, Dr. F., and her Lyme doctor, Dr. L. It is also so comforting to hear their voices as well! When you have been with certain doctors for a while, you do forge a certain relationship with the "special" ones. For us, Dr. F. has always been there in trying to help Jessica with her pain and to try to make her everyday life with pain, as bearable as it could be. He even made house calls! He said that Jessica was his "mitzvah" (good deed). Dr. L., is a very special doctor and a very sweet man. What he has done and continues to do for patients with Lyme, is immeasurable! Jessica would not be here today, still fighting, if it wasn't for him! He is the type of doctor who listens to you, says whats on his mind as well, and then discusses it with you once again! He is a rare breed of doctors and we are so grateful to him as well! It is Jessica's wish to work alongside him one day as a doctor! - I can see that happening for her too one day!!! Who better to be your doctor than someone who has been there!
And then, there is our sweet Dr. "Rainbow" whom we have come to know and love here in Monterrey. She is amazing, smart, funny, accomplished, loving and so, so much more! She's away for a few days and we miss her so!
So today, remember those "special" doctors that you know and thank God for putting them in your path at the right time and the right place!!!
P.S. There are a few other doctors that I will mention in another blog - so don't be upset if you are reading this blog and I didn't mention you!
Till tomorrow,
Jessica's Mom
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Wednesday, October 14, 2009
You Raise Me Up!
Hi to all from Mexico,
Just CLICK on the following link to see Jessica:
The following lyrics come from one of my favorite artists named Josh Groban. The title of the song is "You Raise Me Up". I have received in more than a few comments on the blog, the link to this song and unbeknownst to all of them, this song is one of the songs that I have been singing to Jessica every night here in Mexico, since she came out of the coma, to try and help her to sleep! It is also a favorite of my other daughter Michelle as well because I would play the CD all the time in the car! If you listen and read some of the lyrics, you can see that it is definitely spiritual, and speaks of our relationship with God. Enjoy the words:
Here are some of the words, as I sing them to Jessica:
"You Raise Me Up" by Josh Groban:
When I am down, and oh my soul so weary....
When troubles come and my heart burdened be...
Then I am still and lay here in the silence...
Until you come and sit awhile with me!
You Raise Me Up,
so I can stand on mountains.
You Raise Me Up,
To walk on stormy seas.
I Am Strong,
When I am on Your shoulders,
You Raise Me Up,
to MORE than I can be!!!
Remember, God is with you - every step of the way!
" I will make them walk by streams of water, on a straight path, in which they will not stumble." Jeremiah 31:9
*****
Jessica had a tomography test done today. This test involves injecting IV contrast into her J-tube to see how the intestines are functioning. The tests revealed that they are moving very slowly and so Dr. Luigi is going to get a G.I. consult to figure out what the next course of action will be. We are still on hold for ketamine boosters due to her blood levels, but hopefully, these can be resumed as Dr. Cantu is due back tomorrow as well! She is a fighter and we will keep going forward toward that ultimate goal of a better quality of life! God is good and he does answer our prayers! That is evident in the fact that we are here! May God bless you all today and remember to allow the Lord to RAISE You Up Today!
All my love,
Sarah Gina
AND TO ALL OF YOU - YOU RAISE "US" UP WITH YOUR COMMENTS - SO THANK YOU ALL VERY MUCH!!!
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Tuesday, October 13, 2009
JESSICA & HAVING FAITH
Hi to all our faithful family & friends,
For those of you who didn't see Jessica's story "Counting On A Coma" on Channel 7 - Fox News
Just CLICK on the following link to see Jessica:
I hope this day finds you all well. I have been so touched by all the comments about Jessica's interview on TV and her brave choice in allowing her story to be told. I have known, as only a mother can know, how very special a person she has become. God truly blessed my husband and I when Jessica was born on 1/15/88, after five years of hoping and praying for such a precious miracle. Even then, over 21 years ago, we both had to have the hope and the FAITH in God's promises, that we would eventually become parents, and we did! And not only did God bless us once, but two more times with the births of our other two daughters - Katherine and Michelle!!! God is good and majestic indeed!!!
Just as we had the FAITH back then for the blessing of children, we now have to have the FAITH for the blessing of healing for our sweet Jessica.
What is FAITH? Faith is:
Finding
Answers
In the
Trusting of the
Heavenly Father
Faith is a daily battle. It is hard some days to hold onto that faith and to wait patiently for those answers! In Jessica's case, we have had some complex struggles over the past four years. Between the diagnosis of Lyme disease and RSD and other manifestations, it has been a daily struggle to find those answers and to hope and wait upon the good Lord. Yes, when you see the daily problems that arise, it is sometimes hard to remain focused and hopeful, and to look at those "small" positive things. It is hard to try to steer away from those negative thoughts and find the positive ones which are right in front of you!
Our faith as a family, and Jessica's faith in herself and a God who loves her so, is what has enabled us to be able to take this incredible "journey" to Mexico with the knowledge and belief in that "faith". That in the end, HIS will - will be done and we will see our Jessica one day, whole again - not disabled, not lying in a bed 24/7, but enabled, sickness free, pain free, and walking again one day!!! This is our hope and our faith in the ultimate healer - our Lord Jesus!
So, today, we keep the FAITH ( finding answers in the trusting of the heavenly father) for Jessica's miracle, and we pray for all of you to find the faith today, to look beyond the negative things, and focus on the faith of the positive things!!!
Jessica is continuing on the two antibiotics for the infection. They have stopped the TPN due to elevated blood levels and instead are putting her on a concentrated electrolyte and caloric IV formula. We are also trying to increase her soft foods by mouth and our special "angel" Dr. Rainbow (aka Zavala) and Chyo, her helper, are busy making more custards and homemade applesauce and whatever else they can invent in their kitchen for Jessica. Jessica has adopted Dr. Rainbow as her "young" grandmother" because if you could see her, you would see that she doesn't look a day over 65!!! She brings "love" every day to Jessica (except on Sundays - that's her day off!) We are hoping that Dr. Luigi can start the ketamine boosters again really soon - as they are definitely needed - but we have to wait and be patient for the proper timing!
God bless you all, today and everyday.
Keep the Faith,
Jessica's Mom
INTERESTING POST SCRIPT: I blogged today about Faith because it came to me last night while Jessica couldn't sleep. I posted the blog this morning. Then, just at 12 noon, we finally received a card that had been mailed by Jessica's godmother - Aunt Carol. This card was mailed over a month ago from Florida and we often joked about when we would finally receive it. It was postmarked Sept. 10th and we got it today - October 13th - mail to Mexico is slow! The point of this story is this: contained in the envelope was a card to Jessica and I and also a special bookmark - which said FAITH - in big silver letters!!! God does and has worked and has revealed himself so many times and in so many ways! Amen to that!!!
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Monday, October 12, 2009
15,000 Views of Blog!!!
Hi everyone,
For those of you who didn't see Jessica's story "Counting On A Coma" on Channel 7 - Fox News
Just CLICK on the following link to see Jessica:
I hope you are all well. Jessica is doing well on the antibiotics for her J-tube infection. Dr. Luis (or Dr. Luigi - as Jessica calls him) is the doctor in charge while Dr. Cantu (or Dr. "Green-Shirt") is away at a
pain conference. She continues to be able to move her left leg with a little more ease and she is able to touch it without feeling pain! Her vision is still bothersome, but we just have t0 be patient and believe as the doctors do, that it will be restored! Everyday has its own new set of challenges, some good, some not so good, but, we have seen the miracles that have happened here with the ketamine study and we just have to believe that God, through the doctors here in Mexico, will perform one of those miracles for our Jessica!!! We saw it first with Emily Wilford, and then with Fern Kwantes, and then with Justin Brown. Yes, the roads to wellness were different in every case, but, just as we are all different, so to are the paths taken by each coma patient in this study. I guess what I am trying to say is that even when it may seem that "the chips are down", you somehow have to remain hopeful in the ultimate goal and try not to lose sight of that! I will be honest in that some days are definitely harder than others, but you have to have the hope and remember those who came and left before you! Currently, it is only Jessica and Devon Emmanuel who are still here traveling their different paths to living a pain free life. Please pray for these two young woman, as only they can do the hard job that is ahead of them! Also, pray for the Moms & Dads who travel here with their loved ones on that quest. We, Cathy Emmanuel and I, who are still here, and those that left before us, need your daily prayers as well! May God bless you all and keep you safe and healthy!!!
All my love,
Jessica's Mom
P.S. I would like to personally thank Mr. Ben Perez from the Union Church in Monterrey. He answered Pastor Longs' call for anyone that was going to Texas and he picked up our boxes that were there! Jessica is now so much more comfortable on her special bed pad that was contained in one of the boxes! Thank you Mr. Perez for all of your help! May God bless you and all the Mexican people who have come to our aid!
Also: We came up with this for our sweet Doctor "Rainbow":
*****Rainbows Bring Promise, Hope & Beauty*****
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Sunday, October 11, 2009
SPECIAL THANKS
For those of you who didn't see Jessica's story "Counting On A Coma" on Channel 7 - Fox News Miami, or were having difficulty getting to the link, my husband set up the video in You Tube.
Just CLICK on the following link to see Jessica:
Hola from Mexico,
Special Thanks go out to ALL for a successful GCFD Fundraiser!!!
In 1991 my husband David joined the Garden City Fire Department as a volunteer fireman. He wanted to serve in his community and also, because he was an only child, he thought he could have the "brother" he never had! However, he never imagined that by joining the fire department it would immediately gave him over a 100" brothers" and even a" sister"!
The fire department is a true "brotherhood". They have been there countless times for us over the past few years. First with David's illness and now with Jessica's unbelievable quest!
The fundraiser that they organized Saturday night was successful because of the bond these fire fighters have for each other. I would like to thank the following fire department personnel for making it so successful:
Special thanks to Chief Bill Graham for allowing it to be held, to Chief Bill Castoro for being the guiding hand behind the whole event and to Chief Joe Nadolny, Captain Matt Tittler (and Viki), Ex-Chief Len Rivera, ex-capt Frank Diamond, Greg Young, Jen Marinello and Jake Finneran, Dave Hroncich, Andy Smith, Mike Reale, All Of The Juniors and Tom Riccio, Karen Castoro and Marianne Quinn. Also, thanks to Pat Server & Angel D'Antonio for their help!
And, of course, thanks to all of YOU - our friends - who came to the firehouse to support us in our time of need. Words cannot express how grateful we are to all of you! I was so happy to "Skype" from Mexico and see you all to thank you personally! Jessica says thank you so much for all the outpouring of love, She heard you all clap for her!
Remember this: When Jessica and I finally leave Mexico and return to the USA, it will be because of all of you! Whether you donated in Garden City or Naples, both fundraisers were a huge success and we will be forever grateful for all you have done! May God bless everyone with good health and happiness always. And, if there is anything that we can ever do for you - just ask - and we will be there for you!!!
All our love to all,
Jessica's Family
UPDATE ON JESSICA:
Yesterday was another eventful day here in Mexico. Right before the fundraiser was to begin, Jessica had to be brought down to the ICU for a procedure due to an infection in her J-tube. She is back up in her room and because of a low grade fever, Dr. Luigi put her on antibiotics and decided to give the J-tube feedings a break and just keep Jessica on TPN and whatever she can tolerate by mouth. As I have said before, it is always an adventure when Jessica is in a hospital! Please pray for a speedy resolution to this infection!
Till tomorrow,
Jessica's Mom
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Saturday, October 10, 2009
***Jessica Is A Star***
Hi to all,
For those of you who didn't see Jessica's story "Counting On A Coma" on Channel 7 - Fox News Miami, or were having difficulty getting to the link, my husband set up the video in You Tube.
Just CLICK on the following link to see Jessica:
UPDATE ON JESSICA:
I heard thru so many people how impressed everyone was with seeing Jessica's story on T.V. She has certainly touched so many lives by telling the world what it has been like for her these past few years and raising awareness for RSD and Lyme disease and the complications that both illnesses can cause!!! Jessica was able to hear the video link in her hospital room here in Mexico but is still unable to see it without seeing the "static" that has been plaguing her! The tests on her eyes revealed a small alteration with diminished velocity in the myelin sheath in the brain. The neurologist, Dr. Romulo , believes that her vision will be restored eventually, but whether it will be days, or months, is uncertain at this time! Also, the causative agent is unknown. As you can imagine it is very distressing for her to say the least!
Also, Dr. Cantu has decided to go forward with her ketamine boosters and she has received # 3 & 4 in the past few days. These boosters are essential for her recovery and it is their "weapon" of choice here; especially since some of her lesions are returning on her arm, as well as some of her pain.
SPECIAL REMINDER - FUNDRAISER TONIGHT:
Fundraiser for Jessica's Journey tonight at the Garden City Firehouse - 347 Stewart Avenue - Garden City, N.Y. They will be serving light food and refreshments and selling tickets for different types of raffles. It will be held from 6-11 PM. If you cannot attend, donations can be made to: Jessica's Journey Savings Club and sent to: Carol Biron - 14505 Indigo Lakes Circle - Naples, Fl. 34119 and Thank You All for your support!!!
We hope you are all well. Remember that every journey begins with small steps. We continue to follow the course here, to the ultimate goal of getting Jessica's life back! We are humbled by the outpouring of love from our family, friends, and even complete strangers! We also know that without the love of our God, who strengthens us and ultimately heals us, this journey could never have been made!!! May God bless you today and always!
All our love from Mexico,
Sarah & Jessica
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Friday, October 9, 2009
Jessica Tells Her Story - "COUNTING ON A COMA"
JESSICA WAS ON FOX NEWS-CH 7- MIAMI - Last Night
TO VIEW VIDEO - CLICK ON THE FOLLOWING LINK:
http://www.youtube.com/watch?v=PW_vstm0bS8
Once again, our sweet Jessica has amazed me!!! When I was finally able to view the video of her story on Fox News-Ch.7-Miami (www.wsvn.com) I was so proud of her for sharing her story about her battle with RSD,(and Lyme), the unbearable pain it causes, and her "journey" into the ketamine coma study for a better life, free of pain and sickness. Dr. Kirkpatrick, Dr. Cantu and all the doctors here are so proud of her for allowing the world to share with her this most private battle that she has had to endure! As they have said to her: "Jessica, by telling your story for the whole world to see and hear, you are helping so many other people and raising awareness for this terrible disease called RSD - Reflex Sympathetic Dystrophy- We are ALL so proud of you!!!" We, as a family, could not be more proud indeed!!! God does indeed have a plan for Jessica; one that does not include her being bedridden and unable to walk, and suffering with unrelenting pain - of this I am certain!!!
I would personally like to thank Angela Caraway, the producer of the story. She came to Dr. Kirkpatrick's office and interviewed Jessica and I. She and Joey, the cameraman, were so compassionate and I knew then that God was with us that day and the story would be told in the best way possible for Jessica! I would also like to thank all involved at Fox News -Miami-Ch 7, for a beautifully told & edited piece that I am sure will win the Emmy it was submitted for!!!
Words cannot express how it is to see your daughters story told on TV. It almost seems surreal. Is this really happening? Yes, it is, and not only to us but many others! Is it difficult? Yes. Do you want it all to just go away? Yes! But, I must say this: the human spirit is alive and well here in Mexico!!! First, it is evident in Jessica, who struggles here everyday to make it back to a "normal" life. It is evident in Devon, our fellow american who is here fighting her own personal battle with RSD. It is evident in the doctors, like Dr. Cantu, Dr. Zavala, Dr. Ramirez, Dr. Barrientes, Dr. Castilleja, Dr. Ramos, Dr. Cynthia, who are all here trying to help the coma patients, and also, it is evident in you ALL!!!
From the wonderful people here in Mexico who help us everyday, to all the people in Naples, Fl., who helped with the fundraiser, to all the people in Garden City, N.Y who are helping with the fundraiser there this Saturday, and...to all of our family, friends, and complete strangers who pray and send comments everyday to us - THANK YOU ALL - from the bottom of our hearts - We Love You All!!!
BRAVO JESSICA FOR A JOB WELL DONE!!! YOU WILL BE THE BEST DOCTOR ONE DAY!!! WE LOVE YOU VERY MUCH!!! KEEP FIGHTING!!!
All my love,
One "Proud" Mom
Sarah Gina
One "Proud" Dad
David
Two "Proud" Sisters
Katherine & Michelle
Two "Proud" dogs
Molly & Chloe
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Thursday, October 8, 2009
Jessica on Fox News!
***********IMPORTANT NEWS***************
When we were in Tampa, Fl. in August to see Dr. A. Kirkpatrick, one of the top specialists on RSD, Jessica was asked by him and the people at Fox News Miami - CH. 7, if she would be willing to be interviewed and to tell her story on how her life has been with RSD and her feelings before going into the ketamine coma. Jessica felt that if it would help anyone else who may be suffering with this terrible disease, than yes, she would do it. The reporter from Fox News, Angela Caraway, and Joey, the cameraman, explained that it would be a story about Jessica who was set to go into the coma in 2 weeks and also of another patient of Dr. Kirkpatrick's, Shannon Stocker, and her life after coming out of the coma a few years ago. It was a very emotional interview and we just found out that it is going to be aired tonight!!! Here are the specifics:
The title of the interview piece is called:
" COUNTING ON A COMA"
Airdate: Thursday, October 8th - 10:00 PM Broadcast
FOX News Channel 7 - Miami. (wsvn.com)
I will post the link as soon as I have it for those who cannot see it live.
It will be available tomorrow (Fri.) at their website @ www.wsvn.com
It is a feature story, located @ 1/2 way down the main page when you log on to their site!!!
It is apparently a 5 minute piece and has been entered in an Emmy competition!!!
They are also going to follow Jessica's story until we bring her back home from Mexico to the USA!!!
****REMINDER OF UPCOMING FUNDRAISER:*******
Where:
Garden City Fire Department
347 Stewart Avenue
Garden City, New York
When:
Sat. - October 10th - 6 to 11 PM
Light Food/Refreshments/Raffles
email - BCastoro@gcfdny.com
Donations can also be made to: Jessica's Journey Savings Club
and sent to: Carol Biron-14505 Indigo Lakes Circle-Naples, Fl. 34119
Thank you to all of you who pray for Jessica and our family. I will update you all about Jessica's eyes tomorrow and about ketamine booster #3.
She is hanging in there, but the eyes need to be better real soon! It's another thing she has had to deal with and she is understandably very worried and scared, to say the least!
Till tomorrow,
Jessica's Mom
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Wednesday, October 7, 2009
More Tests On Her Eyes
Sorry I didn't blog yesterday, but it turned out to be one of those days. As you know, Jessica's vision, or static vision/visual snow, is still really bad and very worrisome. The specialized test was finally performed yesterday. It was an evoked potentials test on her eyes. Because of her extreme light sensitivity, they had to perform the test under semi-sedation. The test involves putting electrical stimulators on different parts of the brain and then having her wear special goggles that emitted various different lights into her eyes! If Jessica was fully awake, this test could not be performed. Even under sedation and really not aware of what she was saying, she still voiced the fact that the lights were too bright and that she had a severe headache, as well as it was not comfortable at all! The test results will be interpreted by the specialist and hopefully we will know if the problem lies in the eyes or in the brain. Also, the tests that were done a few days ago on her intestines because of the pain she was experiencing, detected that along with her gastroparesis, she sometimes has a condition called reverse peristalsis, in that, at times, her intestines push food upward instead of downwards and it is this that is causing her nausea and sometimes vomiting to occur. They are putting her on a motility medication and a highly specialized liquid feeding in her J-tube to see if this alleviates those symptoms. Please continue to keep her in your prayers. I will keep you all posted as to the eye test results. Also, we still cannot resume the ketamine boosters, which are crucial, until we know whats going on with her eyes!
Also, yesterday, I had one of those days where I wasn't feeling well myself. You see, through all these past 4 years, God has been tremendously good to me in keeping me healthy to take care of Jessica, and my husband who has Crohn's disease, as well as my other two daughters, and I am so grateful for that! But, yesterday, I stepped out of the "safe" box and apparently ate some Mexican food which did not agree with me and .....well....you know the rest of the story....and so, between Jessica's tests and my problem, there was no blog yesterday! Sometimes you live and learn, as my father used to say! I will not eat that again!
Hope you are all well and we thank you all for your prayers and concerns for us here in Mexico. God is good - he sees you through the good days and the bad days and sometimes - he "carries" you as well.
Remember - the Will of God will never take you where the Grace of God will not protect you!!!
Also - on a happy note - a fellow coma patient - Justin Brown from Pennsylvania, will be leaving the hospital today!! He has been here 2 1/2 months and it was his dad Rick and mom Joan, who were so helpful to me when Jessica and I first got here on August 20th. We will miss them, but are so happy for Justin to be able to return home and try to continue his road to recovery. He will do it - he's a fighter - as are all the people that have to deal with this terrible sickness called RSD!!! Good luck to Justin and his family. (remember the "Ice Pops")
All my love and Jessica's too,
Sarah Gina
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Monday, October 5, 2009
Rough Night/Rough Days
It has been a difficult night and a rough couple of days for Jessica. We are still waiting for the times for the specialized tests on Jessica's eyes. They want to do an exam called a "retinography", as well as an "evoked potentials" test on the mechanisms of the eye. As I have come to know, from our many stays in hospitals, nothing gets done on the weekends! That holds true in Mexico as well. For Jessica, these tests can't come soon enough as her vision problem, on a scale of 1 - 10, with 10 being the worse is a 9 1/2. As she says, "Mom, I have to say it is a 9 1/2 because saying it's a 10 is like saying I am blind!" These have been some troublesome days here in Mexico, but the doctors have been great and we know they are trying to get to the source of the problem, but we need answers really soon!
Also, we cannot continue with the ketamine boosters which are essential for the success of the treatment, and help to alleviate the pain caused by RSD, until the vision problem is resolved!
Please pray for Jessica, for her vision to be restored, for the doctors, for the tests, and for all people that suffer with RSD, Lyme, cancer, etc. and any other horrible illnesses!
God bless you all,
Jessica's Mom
Also: I couldn't be surviving here in Mexico without the help of the Emmanuel family who are here with Devon (Cathy, Ed & Pam). They help to bring me food, buy diapers for Jessica, buy items in the store, etc. But also, just for their companionship and understanding as well.
Also Pastor Long & his wife Sue and all the ladies from the Union Church in Monterrey. They bring food, books, magazines, and more importantly the message of God to our room!
***Also: Our very special angel - Dr. Rainbow - who comes into Jessica's room everyday - with all of her special goodies - like homemade custard and special applesauce (made by Chyo ) and bouncy balls and Nino Jesus - I could go on and on - but, more importantly it is the LOVE she brings with her, as only she can, that has come to mean so much to us - more than she knows!!!***
AND TO DR. CANTU - A MOST SPECIAL DOCTOR - FOR ALL HE DOES FOR THE COMA PATIENTS AND RSD AWARENESS!!!!!!!!
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Sunday, October 4, 2009
Special Thanks & Update
Special thanks go out to EVERYONE that made last nights fundraiser such a huge success! Words cannot express how thankful we are to Team Jessica for all their planning, all the organizing, all the donated raffles, for the folks at Freds Diner, for the Livestream hook-up, for the live music, for all the people that attended, and most importantly for all the love that was felt all the way to our room in the hospital here in Mexico!!! From what we could see from here, it looked like everyone was having fun and all were united in one cause - to help our sweet Jessica recover from this devastating illness. THANK YOU!!! MAY GOD BLESS YOU!!!
Update on Jessica:
The specialized tests that are required for Jessica's eyes can not be done on the weekend. We will have to wait till hopefully tomorrow for them to be done so that we can determine if the problem lies within the eyes or within the brain. Keep her in your prayers today, as I know you do! Also,
we cannot continue with the ketamine boosters until it is resolved, so everything is on hold for the moment.
With love, prayers, and thankfulness,
Jessica & Her Family
XOXOXO
Saturday, October 3, 2009
12,500 Views of Blog - Amazing!!!
Today is a special day in Naples, Florida!!! Nancy & Joe, Carol & Ray, and their whole group called "Team Jessica" are busy getting all the final preparations together for tonight's event at Fred's Diner on Immokalee Road in Naples! It starts at 6:00 PM and I'm sure they would welcome anyone who felt like just dropping by! From what I hear it is going to be a terrific night of fun, food, live music, and many, many exciting raffles!!! To all that are going tonight, THANK YOU, from the bottom of our hearts, you are all very special to us and we appreciate all you are doing for our Jessica! I am going to be Live from Mexico to say hi and thanks for such a tremendous outpouring of love you have all shown to us! Have fun - see you all later!
Sarah Gina (Jessica's Mom)
UPDATE ON JESSICA:
The neuro-opthomalogist did some preliminary tests last night. He is returning today in order to perform some more highly sensitive testing on Jessica's eyes. Her neurologist wants a thorough exam done to determine what, if anything, is happening with the "rods & cones" of her eyes, as well as the optic nerve. Yesterdays test was difficult, as it is hard, even under light sedation, to use bright lights in her eyes. The doctors were very impressed on how well she cooperated, even under such difficult circumstances. All she kept saying to the doctor was: Please just fix my eyes, please just figure out what is happening with them!".
Pray for Jessica's "static vision" or "snow vision" to be resolved quickly!!!
All our love,
From Mexico
Jessica & Her Mom
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Friday, October 2, 2009
Jessica's Eyes
Once again we ask for special prayers today as the specialist ( a neuro-opthomalogist) comes back to the hospital this afternoon to perform tests on Jessica's eyes. She will be put under with proporfol in a semi-conscious state so that the doctor can be able to use the lights he needs to see behind her eyes. This condition of "static vision" or "visual snow" has been plaguing Jessica and not improving. I try to reassure that all will be well and her eyesight will return to normal, and the doctors are trying to reassure me as well. I will feel better though, after the tests are performed and we have a diagnosis. Is the visual snow or static vision coming from the eyes or is it coming from the brain? I will keep you posted. Pray for Jessica today, as her eyesight is very important and the problem needs to be figured out!
All my love,
Sarah Gina
(Jessica's Mom)
ALSO: REMINDER:
Tomorrow - October 3rd - Fundraiser for Jessica in Naples, Fl.
@ Fred's Diner - 2900 Immokalee Road - Dinner/Music/Raffles
RSVP- ASAP- Last call to Nancy @ (239)431-7928 or e-mail her @
uareworthit@aol.com Please support "Team Jessica" for all their
hard work in getting this fundraiser organized!!
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Thursday, October 1, 2009
Special Prayers Needed!!!
Jessica needs some special prayers today. She started having fevers once again. Cultures are being drawn to determine what type of an infection she may have. She is also still experiencing the "static" vision and the specialist is returning on Friday to perform different exams under light sedation due to her extreme light sensitivity. As I've said before, it is always an "adventure" when Jessica is in a hospital. Got to go; I will keep you posted. Keep her in your prayers once again today! Thanks....
Love,
Jessica's Mom
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Jessica's Journey to Getting Her Life Back
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!