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rvrtoy
03-29-2005, 11:41 AM
Sorry to be a downer today but Faith needs your prayers again.
As most of you know, when Faith was born in November of 03 she was diagnossed with CF and has been a fighter againsted this disease every day of her life. Her mom and I have become very active in fund raising efferts to help find a cure.
Last week Faith had to have some routine blood work done. Yesterday we got a call from her CF physician letting us know that she needed to come in right away for some additional blood work because they were concerned with the findings of her tests.
Today we were told that she is most probably suffering from an additional condition called "Celiac Disease". This disease like CF attackes your digestive system however unlike CF will cause you to never be able to live a normal life!! No eating out for lunch, no snacks at a movie theatre, no pepsi's on the sand bar, no donuts...nothing normal to a healthy child. Celiac Disease means that you have to have a glutten free diet. Gluttens are in every f***ing thing you eat or drink.
The rest of the tests will be back within 2 weeks however, the doctors want to try treatment now and see if her condition improves.
What a f**ked up start my little angel has. I am just truely thankful to have her around. She is such a blessing to me and my family.
She has a website. It is www.babiesonline.com/babies/f/faithnicole

Tom Brown
03-29-2005, 11:44 AM
Faith and your family have my best wishes.

hoolign
03-29-2005, 11:48 AM
Prayin for you guys
Jeff.

RiverDave
03-29-2005, 11:48 AM
I am terribly sorry to hear that. :( I hope that her conditions improve immediately, Faith and your family are in my thoughts and you have my best wishes.
RD

Chris Winn
03-29-2005, 11:52 AM
as a new father, i cannot image or begin to understand the feelings you guys have..
i do wish the best for little faith, and i hope that there is something that they can do to ease her life, children are most important thing that we have period.
best of luck to you... ;)

GrapeApe
03-29-2005, 11:56 AM
Hey Steve.. Your Angel is in our Thoughts & Prayers.. As always we will keep the Faith, and pray she gets better soon...
*** Grape Ape ***

boxscore
03-29-2005, 12:05 PM
God bless your whole family! I have a friend with CF. He's now in his mid thirties and is a true champ. He has had his share of suffering and has had tons of setbacks. But at the same time... he leads the richest life. Those who battle every day of their lives are true warriors. You daughter will be no exception!

AzLakeLizard
03-29-2005, 12:11 PM
From Mardonzi and AZLL
Our Prayers and thoughts are with your family!

MsDrmr
03-29-2005, 12:11 PM
You are all in my prayers, and I will add you to my prayer list in my group. I am so sorry to hear about your daughters struggles, I can't imagine what you are going through as her parents. I wish all of you the best, and will keep you in my thoughts and prayers.

Sleek-Jet
03-29-2005, 12:14 PM
Sorry to hear this about your little Angel... alot of adversity for such little one, but she seems like a fighter and has a strong and loving family to help her along her way...
My best wishes and thoughts to you and your family. :clover:

dicudmore
03-29-2005, 12:18 PM
very sorry Steve.....
Will keep your family and Faith in thoughts for sure :wink:

JackieV
03-29-2005, 12:23 PM
The strength and prayers are with you and your little one. Truely sorry that she has to deal with this :( .
Miracles do happen, God Bless your whole family.

Screaming Pete
03-29-2005, 12:41 PM
Steve, hang in thier hold your angel close and give her a hug and a kiss from all of us, we love her and wish her the best...Pete

BarryMac
03-29-2005, 01:04 PM
Sorry to hear the news Steve, your little Angel is in my Families thoughts and prayers...

Flyinbowtie
03-29-2005, 01:14 PM
rvtoy;
I have never walked in your shoes, but I have come close.
You and your family are in our prayers.
Believe in miracles, they happen.

JetBoatRich
03-29-2005, 01:33 PM
My heart goes out to her and your family, she is in our prayers.
Her WEB page is very nice, thanks :D

tamalewagon
03-29-2005, 01:36 PM
Our best to your family...your little Angel will be in our thoughts and prayers.

OGShocker
03-29-2005, 01:38 PM
She has never left our prayer list but, tonight I'll say her name a little louder. She is our little girl too!

FMluvswater
03-29-2005, 01:43 PM
I can only imagine how you and your wife must be feeling. CF on it's own is a lot to adjust to and now Celiac's - well may I say your daughter is aptly named. :) Keep the faith and believe that you can adjust to this also. Your family is made of pretty tough stuff. You are all in my thoughts and prayers. Thank you for sharing what's going on. I hope you'll keep us updated. :chi:

NashvilleBound
03-29-2005, 01:50 PM
Steve, I went to your website...what a cutie!! If you ever have a fund raiser I will come out from TN for it....just let me know. Keep the "Faith"!!
Jeff

rvrtoy
03-29-2005, 03:40 PM
I knew I could count on you guys for your good thought and prayers. Please keep it up at least while all of this uncertainty is out there.
And please keep up your thoughts and prayers for Madison and her family!!

Mr.Havasu
03-29-2005, 04:00 PM
We will be praying for your angel. I know prayer works miracles and we will be praying for one for Faith. God bless,

Outnumbered
03-29-2005, 04:11 PM
:frown:
I am really sorry to hear that. Hopefully the rest of the tests will come out better. Lets hope that science comes up with some miracle cure soon. It is amazing what research and advancements in medicine are doing for people now--in our lifetime. Don't give up hope.
Thoughts and Prayers
John

THOR
03-29-2005, 05:52 PM
Steve,
she always is in our prayers brother. I'll say a special one tonight. Take care man.

Mrs.Racer277
03-29-2005, 06:00 PM
You and your family are in our thoughts and prayers. Faith is a beautiful little angel.

rmarion
03-29-2005, 08:39 PM
Thoughs and Prayers.................
Marion Family

racecar.hotshoe
03-29-2005, 08:47 PM
Our prayers are with you as well!...........

LHC30Victory
03-29-2005, 08:54 PM
What can we do for you?

syke-o
03-29-2005, 09:06 PM
u have our thoughts and prayers as well

ROZ
03-29-2005, 09:09 PM
What a f**ked up start my little angel has. I am just truely thankful to have her around. She is such a blessing to me and my family.
That little sweetheart you have there is tougher than all of us put together. Hang in there, your family will adapt and in the end what you experience will be "normal".
Just curious, is ther anyone else in your family who is alergic to gluten?
For those who don't know, gluten is a protien in wheat and a few other grains..
Your family is in our prayers. :smile:

KACHINA KEN
03-29-2005, 09:11 PM
Prayers out now. Answers soon to follow. :smile:

rvrtoy
03-30-2005, 09:59 AM
That little sweetheart you have there is tougher than all of us put together. Hang in there, your family will adapt and in the end what you experience will be "normal".
Just curious, is ther anyone else in your family who is alergic to gluten?
For those who don't know, gluten is a protien in wheat and a few other grains..
Your family is in our prayers. :smile:
No one in my family is allergic to gluten. The only one in my family that has any allergies is my 7 year old son who has some allergies to pine needles and pollens.
The problem lies in changing her diet. With having CF she needs to be on a high in fat and fiber diet however, Glutens are found in everything that she eats. It is so rare to have both of these conditions that if the other two tests come back positive she will be the only case in San Diego County. Her doctors (who are the best money can buy) are scratching their heads and flat telling us that this is going to be VERY challenging to say the least. We will keep our heads up and get through this.
Thank you all again for your thoughts and prayers.

NuckinFutz
03-30-2005, 11:04 AM
Good Luck with the results. Hopefully the doctors will find out the test results don't show any further trouble. My wife has a worker with a boy that has CF and I've seen the struggle she has with it. I don't wish it on anyone and feel for anybody who has it. Best wishes.

ROZ
03-30-2005, 12:33 PM
No one in my family is allergic to gluten. The only one in my family that has any allergies is my 7 year old son who has some allergies to pine needles and pollens.
The problem lies in changing her diet. With having CF she needs to be on a high in fat and fiber diet however, Glutens are found in everything that she eats. It is so rare to have both of these conditions that if the other two tests come back positive she will be the only case in San Diego County. Her doctors (who are the best money can buy) are scratching their heads and flat telling us that this is going to be VERY challenging to say the least. We will keep our heads up and get through this.
Thank you all again for your thoughts and prayers.
I'm sure your it will be tough, but I bet your Dr's will have the nutritionists looking to find fiber from other sources...on the double...
Please keep us informed with the remaining test results. We'll have ya'll in our thoughts and prayers.... Faith will overcome :)
Is she at Children's?

rvrtoy
03-30-2005, 02:17 PM
She is at home waiting for the results to come back. The test were done at Childrens in San Diego at the CF clinic.
I will keep everyone informed.

MRS FLYIN VEE
03-30-2005, 02:19 PM
you are all in our thoughts and prayers.

rvrtoy
04-20-2005, 08:09 AM
Faith is at home resting now after 2 days of testing and exploratory surgeries. With the findings from yesterday and Monday her doctors are certain that she has Celiac disease and they are 90% cetain that she suffers from type 1 diabetes. All will be confirmed by the studies just done and all the results will be back by Friday.

dicudmore
04-20-2005, 08:22 AM
Faith is at home resting now after 2 days of testing and exploratory surgeries. With the findings from yesterday and Monday her doctors are certain that she has Celiac disease and they are 90% cetain that she suffers from type 1 diabetes. All will be confirmed by the studies just done and all the results will be back by Friday.
sorry to hear that Steve....we already know she's a fighter though :D

Waldo
04-20-2005, 08:26 AM
Prayers already said.

bunny 166
04-20-2005, 08:32 AM
Prayers coming your way.....hang in there--she is such a cutie! :)

My Man's Sportin' Wood
04-20-2005, 08:42 AM
I'm sorry to hear about the news. I'll keep all of you in my thoughts, and pray that He gives you strength to face the challenges that lie ahead.
Angie

rvrtoy
04-20-2005, 10:05 AM
your prayers are appreciated

RiverToysJas
04-20-2005, 10:10 AM
Faith Nicole and your family are in our family's prayers!!!
RTJas

Ms. AquaBoogie1
04-20-2005, 10:11 AM
Steve, our prayers are with you and your family, I too have Celiac disease :frown: , I have sent you a PM..... :)

unleashed
04-20-2005, 10:14 AM
Sorry to hear about the new challenges. This is gut wrenching to say the least. My families prayers are with you. Shes definitly a miracle baby!
Deano
Unleashedclothing (http://www.unleashedclothing.com) :devil:

riverhottee
04-20-2005, 11:35 AM
Hey rvrtoy,
I've never met you but my prayers are with you. What a beautifull little girl you have. I know what it's like to have a sick baby and searching for answers.
My heart truly goes out to you.
I'm sure youv'e already searched the web but, have you checked out:
www.glutenfreemall.com
www.kintera.org/site/pp.asp?c=ewK0LjP7E&b=24570
www.signonsandiego.com/uniontrib/20040512/news_lz1f12light.html
www.traderjoes.com/products/brochures/glutenfree_west.asp
There's nothing worse than seeing your baby in pain.
God bless your family

MsDrmr
04-20-2005, 11:45 AM
I am so very sorry for what you are all experiencing right now. I would not wish this on anyone. I will keep you in my prayers

ROZ
04-20-2005, 12:02 PM
Hey rvrtoy,
I've never met you but my prayers are with you. What a beautifull little girl you have. I know what it's like to have a sick baby and searching for answers.
My heart truly goes out to you.
I'm sure youv'e already searched the web but, have you checked out:
www.glutenfreemall.com
www.kintera.org/site/pp.asp?c=ewK0LjP7E&b=24570
www.signonsandiego.com/uniontrib/20040512/news_lz1f12light.html
www.traderjoes.com/products/brochures/glutenfree_west.asp
There's nothing worse than seeing your baby in pain.
God bless your family
Awesome links riverhottee!!!
Rvrtoy, Again my family wishes you well and is in our prayers! :)

voodoomedman
04-20-2005, 07:28 PM
Steve,
God bless your family!!!!! Our prayers are with you to get through this. Not only for Faith but for you and your wife. I can't even fathom what your going through. It breaks my heart when my son is crying with gas pains; I couldn't even begin to imagine what your going through.

locogringo
04-20-2005, 07:44 PM
if it helps any more, we are thinking and praying for you guys also. Hold steadfast!

Miss BK
04-20-2005, 08:05 PM
Hi Steve,
I am so sorry to hear how everything is just piling up on poor little Faith. :( Your family sure has been put through a test. I don't have any expertise on a diet for Faith, but I know a group of people who may be able to help.
My 11 yr old son has Graves disease, which is an autoimmune diesease like Type 1 Diabetes. I'm on a support board with dozens of others who suffer from these diseases as well as many abdominal problems, including Celiacs.
These folks have been a life saver for us. The site is: http://www.mediboard.com
I sure hope someone there can help you out. I'll be praying and sending positive thoughts your way.
If you recall, my sister and brother both had CF. I don't recall any special diet for him, except for the extra enzymes he had to take to digest his meals (something like 8 pills per meal). I remember being in awe that he never needed any water to swallow them all. He kinda bragged about it. ;)
I just wish there was more I could do for you .... Let me know if there is anything.

Ultracrazy
04-20-2005, 10:58 PM
Hang in there Steve...........we are all praying for your family and Faith.
Steve

MOBrien
04-20-2005, 11:20 PM
What an absolute Angel she is! She's in our prayers for sure.
Give her lots of hugs, lots of support, more hugs and hang in there man.
Positivity is powerful stuff........... :clover:

rvrtoy
04-21-2005, 09:34 AM
Thanks again for your support and prayers. I know it is a rough patch and everything will work out.
There is another thread about what ***boat is to you...let me tell you what a crutch and support group it has been for me and my family.
Thank YOU!!!

wild1s
04-23-2005, 09:05 AM
Hi we are new to this site and our son also has CF and has been through alot and me and my family know what you are going through CF has taken over our lives. Good luck with everything and hope you get good news from all of your tests we know how hard it is to wait for news but be strong for your little girl once again GOOD LUCK

Parker Dreamin
04-23-2005, 10:35 AM
Everybody stay strong and our prayers are with you guys.....