Update on the condition of "lil rvrtoy" Faith Nicole

[rvrtoy]

Faith has been diagnosed with a condition called "Meconium Ileus". This is hardened meconium in the small intestine that is unable to pass through to the large intesine. She went into surgery today at 1:30pm. The surgery succesfully removed this blockage.
This is a very rare condition in new born babies. In 90% of infants that have this condition it is caused by Cystic Fibrosis (sp). We are praying that Faith is the 1 out of 10 that does not have this horrible disease.
My wife and I are praying for a negative result to the C F test. The test will be taken on Tuesday and we will have the results within one week. If you beleive in God please align your prayers with ours so we can beat this thing.
In addition, The test that will be taken on Tuesday requires so much blood to be drawn that Faith will likely need a blood transfusion. We are asking people to go to thier local blood banks and donate blood in the name of Faith Nicole Khoma @ Childrens Hospital NICU in San Diego, California (this is our home for the next 4 weeks or so).
Thank you for reading this post and Thank you even more for your prayers and support.
***boat....would you please keep this post at the top of the boards for a few days. Thank you

[RiverToysJas]

Our players will be with you, and your wife, for little faith! Please keep us posted, and keep the faith (no pun intended).
RTJas

[JetBoatRich]

I am very sorry your daughter has gone through this, we will be praying that everything will be alright through this difficult time.
take care of her, she is a beautiful little girl.
http://www.***boat.com/forums/attachment.php?s=&postid=515184

[Dr. Eagle]

My thougts and prayers and those of Mrs. Eagle are with you and your family.

[MikeF]

Hoping everything turns out OK.:(

[Dusty Times]

Our prayers are with your family.

[Windy]

Dang...Im so sorry your going through this with your precious baby.
My thoughts and prayers are with you.
Hugs,
Windy

[Kim Hanson]

I will pray everyday for your baby, hang in there.:frown:

[Waldo]

I have already prayed for you and your family.
I would be more than willing to give blood but I just did this morning for a friend who went through a bone marrow transplant.
Godspeed her recovery.

[HCS]

My prayers are with you all. I went through a terrible situation
with my daughter when she was 2 years old. She had a blockage
in her air way, and almost died from it. It took several surgeries
and lotts of grief to get through it, but she is a healthy 22 years old and she's fine.
I hope and will pray that the same turns out for you all!!

[Kilrtoy]

Nothing but the best to that pretty little girl, May she be that 1.
Hang tuff guys.......

[Faster Daddy]

You will be in our hearts and our prayers, hoping that all of Faith 's test results are positive. God Bless

[Jungle Boy]

I'm generally not the prayin' type, but this is an special case. I hope the best for you guys and your baby. Stay strong.

[ultimate1]

Me and family truley wish you the best and hope everything turns out fine. God Bless

[HOSS]

Wife and I will pray for your baby in church today. GOD speed.

[Banshee]

Prayers and best wishes to Faith

[SDLifesaver]

Our best wishes go out to your family. We have a 6 week old, so I can only imagine how stressed you guys are. Good luck. Nick

[LUVNLIFE]

You have the Luvnlifes prayers Rvrtoy.

[Flying Tiger]

Our hearts, thoughts and prayers are with you.
Ross, Trev and Maren Turbo

[TheLurker]

Best wishes for little Faith. A cute baby with a cute name:)

[rvrtoy]

Thank you all for your prayers and best wishes. My family is doing well. We are staying strong...most of the time. I will post upgates as I can and recieve them.:(

[Dribble]

I have said a prayer for your child and I will continue to pray that everything turns out OK. God Bless.

[MRS FLYIN VEE]

to the family of the precious little girl Faith.. We know this is a trying time in your lives and for little Faith.. she and you have been in our thoughts and pryers from the first day you have brought this little one into this world.. we are very sorry to hear about what is happening now but there are many prayers out there for this dear child and your family.. we will continue to pray for Faith and your family everyday until all prayers are answered and that they will be.. this is a tuff obsticle in your lives and hers. You have a special little girl that will pull through this with her loving family and with all the family and friends she and you have incurred here . We hope the prayers are answered soon so she and your family may live a strong and healthy life.. keep up the good Faith and stick together.. all the prayers and strength is needed right now.. never give up now is the time to pull together and stay together .. GOD BLESS ALL OF YOU. GOD will give you all the strength you need.. then after this is over.. he will give you the time with her that you all so deserve..
ALL OUR LOVE,THOUGHTS AND PRAYERS ARE WITH YOU..
THE FLYIN VEE'S Jamie and Charmaine..

[rvrtoy]

Thank you all again for your thoughts and prayers. I will keep you posted on any new developments tonite. For now, we are off to our second home (NICU)...:(

[Oceanside]

My thoughts and prayers are with you and your family; God Bless

[rrrr]

Try to be strong...
Don't forget you need to eat and sleep too, take care of yourselves.
I will be praying for your family.

[jbtrailerjim]

Steve,
Our thoughts and prayers are with you and your family. Be strong and take care.
Jim & Tracey

[mike37]

My thoughts and prayers are with you and your family; God Bless.
Don’t let the unknown get you down take every day as it comes and love every day

[Mrs Scuba]

The Scuba family's prayers and thoughts are with you. She is a beautiful little girl. Keep your"faith" and all will turn out for the best. You have all the members on this board praying for you and your family.
Monique, Steve and Angelisa

[Cheap Thrills]

A poem for Faith .
A Time to Heal
I just wish I knew some magic words to say
to take your troubles all away,
But at times like these we realize
That God who is both kind and wise ,
can do what none of us can do
and thats to heal and comfort you
So I commend you to his care
and may he hear your smallest prayer
and grant returning health to you
As only He alone can do .
C.T. :)

[Keithb87]

Best Wishes to you and your little one.
I have a Nephew that had been through Lukemia. Recently, they said that he is in Remission.
The best advice that we got was to take it 1 day at a time.
My thoughts and prayers are with you and yours.

[missboatnam1]

:( she is so perfect, we wish all the best for her.....please do keep us posted! she will be in our thoughts always..
the boatnams

[Badboat1]

Our prayers are with the beautiful little girl that is in need.

[lovemyultra]

we will be praying for you

[syke-o]

wishing you the best of luck!

[rvrtoy]

As of 9:30 this evening Faith is making better that expected progress. During her surgery yesterday she was put on a ventilator. The doctors told us that she would be on this machine until Tuesday night. We just recieved word that she will be removed from the ventilator by 10:00 tonite. A whole 48 hours ahead of scheadule.
Her C.F. test has been moved up from Tuesday to Monday. We are still praying for a negative result. The results will take about 1 week to come back. The great news on this front is that her blood cells are reproducing at a better than average rate. What this means is that a blood transfusion will most likely not take place. I will be donating blood Monday morning anyway, as my eyes have been opened to many ill children that will benefit from it.:D
All of your thoughts and prayers are working. Most have already been answered, so please keep them coming. In the past 4 days we have progressed what they said would take nearly two weeks.:D God is working miracles in my little girl and I thank him, and you for your support.:D :D
I will post another update on the night of 11/24/03...

[Havasu47]

Faith and your family will be in our prayers. Best of luck.
Brian

[locogringo]

May angels tears fall down and cover her with healing grace.

[Outnumbered]

Rvrtoy,
As a father of two girls I know how you must feel right now. Keep strong and remember there are a lot of people praying for her.
God bless your little girl and your family.
OL

[Seadog]

May God bless you and support you in such trying times.

[Screaming Pete]

RVR Toy, I will be going to the San Diego Blood bank to donate in your little ones name, Give here a hug from all of us on the boards and the Mrs. too, Happy Thanks Giving to you and your Family.:)

[superV]

My thoughts and prayers are with you and your family...;)
God Bless!

[MsDrmr]

I am so very sorry that during your time of joy and happiness, this cloud had blown upon you. May you both be blessed with the results sooner than one week and may they be the results you were hoping for. I work with man faith abiding people who are praying for you as well as myself and my family. I wish only the best your family and if you sould need anything, please don't hesistate to ask. I will do what I can.....make sure you and the mrs are taking care of each other as well,,,,you both must exhausted and depleated during this time....
Thoughts and prayers are with you

[GrapeApe]

Steve,
Our Prayers and thoughts are going to your Beautiful Baby Faith, and your family. Stay strong. Great things can happen to great people.
*** Grape Ape ***

[JustMVG]

Rvrtoy, our hearts and prayers are with you and your family, i have 3 girls, 14,11 and 9, i can't stand the thought of anything happening to them, keep up the hope and faith, your little one will be just fine.
Mike,Margaret, Jackie, Kim and Somer
The Van Gompel Family

[Ultra5150]

Steve,
I could not believe what I was reading when I saw this post. You have always been so kind to our family, please know that Teresa, Maya and I will be praying for you until you bring your precious bundle of joy home.
Stay strong my friend.
Enrique

[likwidsukr]

I dont know you but I have a 3 year old som and I know a fathers love! Your familt is in my prayers and we hope for the best.
Steve Kim and Dylan

[Ms. AquaBoogie1]

Rvrtoy, our thoughts are with your entire family at this time. We pray that everything turns out well. She's in God's hands. Take care, Mr. & Ms. AquaBoogie1:)

[Screaming Pete]

I seen Steve down at the San Diego Blood Bank making a deposit and I was right behind him. He said thing are looking up for Faith she is off the ventalator and will keep us up dated :)

[rvrtoy]

Originally posted by Screaming Pete
I seen Steve down at the San Diego Blood Bank making a deposit and I was right behind him. He said thing are looking up for Faith she is off the ventalator and will keep us up dated :)
Screaming Pete
It was nice meeting you today. I wish it was under a more positive setting. My family and I thank you for supporting us in our time of need.:)
Thanks again to all for your thoughts and prayers. It is really helping my wife and I keep our spirits up.:D
I will post an update on her condition later this evening.:)
The rvrtoys

[OutCole'd]

My thoughts are with you and your family. Be strong.

[rvrtoy]

Today has been another good day in Faiths healing process. As Sreamin Pete noted she has been removed from her ventilator. She is breathing on her own with no outside support. She is awake and happy for the most part. She is no longer on pain medication and appears to be very comfortable.
After drawing a lot of blood for the C.F. test, It does not appear that she will need a blood transfusion.:D
She is showing signs of recovery in her intestines as well. The nurses and doctors have stated that they are hearing bowel (sp) noises. This means that fluids and solids (anything left from before the surgery) are starting to make thier way out of her system.
It is expected that her drainage tube will be removed from he stomach by 11/25/03. Once this happens she will once again be able to eat. They will start her with some Pedialite to see how her system reacts. If this goes well she should be able to nurse again by the weekend.
Once again thank you to every one for your thoughts and prayers.
The rvrtoys

[JetBoatRich]

That is very encouraging news. She will continue to be in our thoughts, a long with your family.
Take care and keep the faith.

[missboatnam1]

VERY GOOD NEWS!! :) :)

[Rexone]

My thoughts are with you and your little baby girl rvrtoys. Sounds like she's doing well which is great news.

[Moomawnster]

Best wishes to your little girl , I hope she is back home being a little "handful" SOON ! .... Bill

[OGShocker]

My niece was born weighing 1 lb 6 oz. She is now 18 and VERY healthy. With God's love and great Doctors all things are posible! We will pray for your family and hope your Thanksgiving will come with Great news!

[Aqua Boogie1]

AB1's prayers goes out to you and your family..........:) :cool:

[RexRathburn]

Best of luck to you and your family. Stay strong!

[prosthogod]

Our families prayers are with all of you. We have 3 healthy boys and thank god everyday for that, Can't imagine what you are going through. Everything will be good and we hope to see you all soaking up the sun come summer.:) :)

[rvrtoy]

WoW...What another great day.
Faith does NOT and will NOT require a blood transfusion. She is healing very well. As of today she is nearly 2 weeks ahead of scheadule.
Her stomach suction tube was removed around 10:30 this morning. By 11:30 she had her first taste of nurishment. She fed (Pedialite) very well 4 times today. If the night goes just as well, she will be on deluted moms milk by morning.:eek!:
If things continue to go as they have been, we could see a healthy baby girl home by December 1st.:D :D
After confiring with some folks who have had a child with C.F. and many hours of research, we have found that Faith only had 1 of many symptoms. One family stated that they had as many as 7 of the 9 symptoms but no one I have spoken with had less than 3 symptoms. I guess what i'm trying to say is that even though the experts have given only a 10% chance that it is not C.F. Our own research has brought up the odds. :D :D :D
Thank you again for your support, thoughts and prayers.

[Boozer]

Rvrtoy my thoughts and prayers are with you and your family.
IF for any reason which I hope it does not but if it does turn out that your daughter has C.F. and you have any questions feel free to ask me.
My brother was dignosed with CF when he was 4 months old. At that time he was givin a life expectancy of 8 years. My brother turned 21 on October 6th and is extremely healthy. Kids only 5'9 and 140 lbs and drinks most people twice his size under the table. The medical advancements made for those who suffer from C F have been absoultely incredible. We expect my brother to live a full healthy life and even his doctors think he stands a good chance at it.
So if for any reason she does come back as having it just realize it is in no way a death sentence. More like an obstacle.
Best wishes to you and your family.

[Jungle Boy]

Good new indeed RV. You guys must be very encouraged by your daughters progress. I hope things continue on the positive side.

[Screaming Pete]

Originally posted by rvrtoy
WoW...What another great day.
Faith does NOT and will NOT require a blood transfusion. She is healing very well. As of today she is nearly 2 weeks ahead of scheadule.
Her stomach suction tube was removed around 10:30 this morning. By 11:30 she had her first taste of nurishment. She fed (Pedialite) very well 4 times today. If the night goes just as well, she will be on deluted moms milk by morning.:eek!:
If things continue to go as they have been, we could see a healthy baby girl home by December 1st.:D :D
After confiring with some folks who have had a child with C.F. and many hours of research, we have found that Faith only had 1 of many symptoms. One family stated that they had as many as 7 of the 9 symptoms but no one I have spoken with had less than 3 symptoms. I guess what i'm trying to say is that even though the experts have given only a 10% chance that it is not C.F. Our own research has brought up the odds. :D :D :D
Thank you again for your support, thoughts and prayers.
RVRTOy, Man thats great news, Hopfully by the time i getback from the river on mon. Faith will be HOME. Congrats!!:)

[summerlove]

I've been following this topic since it was first posted. You sure named her right! I'm so relieved to hear something good come of a bad situation on these boards. Thank God. There is definitely power in prayer, and little Faith certainly had/has many people praying for her...
May you enjoy a lifetime of happieness and surprises from that special little girl...I look forward to seeing her at the lake next year!
rick

[GrapeApe]

Steve,
That is great news. Our thoughts and prayers are still with you and your family. I will be down to the shop in a few weeks to pick up our boat, and I look forward to seeing some more pics of your Beautiful Baby "Faith". Get some rest, eat right, and stay Healthy. You will need it with your little Supercross Team that you are Raising..
*** Grape Ape ***

[rvrtoy]

Originally posted by Boozer
Rvrtoy my thoughts and prayers are with you and your family.
IF for any reason which I hope it does not but if it does turn out that your daughter has C.F. and you have any questions feel free to ask me.
My brother was dignosed with CF when he was 4 months old. At that time he was givin a life expectancy of 8 years. My brother turned 21 on October 6th and is extremely healthy. Kids only 5'9 and 140 lbs and drinks most people twice his size under the table. The medical advancements made for those who suffer from C F have been absoultely incredible. We expect my brother to live a full healthy life and even his doctors think he stands a good chance at it.
So if for any reason she does come back as having it just realize it is in no way a death sentence. More like an obstacle.
Best wishes to you and your family.
Thanks for the kind words and words of encouragement Boozer. I hope your brother lives a LONG healthy life (sounds like he is). Happy belated birthday to your bro.
If I should have any questions I will take you up on your offer.:)

[rvrtoy]

Originally posted by GrapeApe
Steve,
That is great news. Our thoughts and prayers are still with you and your family. I will be down to the shop in a few weeks to pick up our boat, and I look forward to seeing some more pics of your Beautiful Baby "Faith". Get some rest, eat right, and stay Healthy. You will need it with your little Supercross Team that you are Raising..
*** Grape Ape ***
Thanks guys. We are taking care of ourselves as best as we can but as you can expect our first priority is Faith. Since we have been getting such wonderful news lately it has been much easier for Mrs. rvrtoy to sleep. I will keep you posted. Steve

[rvrtoy]

Originally posted by summerlove
I've been following this topic since it was first posted. You sure named her right! I'm so relieved to hear something good come of a bad situation on these boards. Thank God. There is definitely power in prayer, and little Faith certainly had/has many people praying for her...
May you enjoy a lifetime of happieness and surprises from that special little girl...I look forward to seeing her at the lake next year!
rick
Thanks for your support. Prayer does work. As you have read (probably) Faith is about 2 weeks aghead of her scheaduled recovery. We were told we would be lucky to have her home for Christmas. It now looks like she may be home next week. Talk about an answere to prayer.:) :)

[76BARRON]

there isn't anything i can say that hasn't already been said(better) by others.so hang in there!!!!!
isn't it interesting how a father can feel the pain of another
father even if they have never met?????and may never?

[rvrtoy]

Originally posted by 76BARRON
there isn't anything i can say that hasn't already been said(better) by others.so hang in there!!!!!
isn't it interesting how a father can feel the pain of another
father even if they have never met?????and may never?
That is very true. When I first posted this my intention was not to have all these responses. It was simply to vent my frustrations, to make myself feel better. You know to temporarily lift the huge weight from my shoulders.
The response and support has been unreal. My family is in awe and are VERY thankful.
We truely (from the bottom of our hearts) Thank everyone. Hopefully one day we will be able to introduce our little miracle baby to everyone here:D

[Mrs Luvnlife]

So great to hear the good news. Our thoughts and prayers will continue to be with you through all this and we hope you are all home real soon.
The Luvnlife's

[rvrtoy]

Today has been even better than yesterday. Faith was able to have breast milk today for the first time since she was born. Man did she like that. She drank 15CC's (about 1/2 ounce) in less than 90 seconds. Her intestines have been making all the noises the doctors want to hear.
At this point we are waiting for the C.F. test to come back. I am VERY confident that the results will be negative.
All Faith has to do is have a bowel movement (we are hoping for it to happen tonite) and get up to a complete feeding schedule (2 ounces every three hours) and she will be able to come home. According to her surgeon, resident physicial, supervising physician, nurse practitioner......amoung others, this should happen before THIS SUNDAY EVENING!!!!!!:D :D
This is more than 4 weeks ahead of schedule. Now this I am thankful for!!!!!!!!
Thanks again for all your prayers and support. With all your help, it looks as if we have beaten the odds here. My little miracle baby will be home this week!!:D :D
I will keep everyone posted on the C.F. test results as soon as I have them:cool:
Steve

[TheLurker]

Originally posted by rvrtoy
All Faith has to do is have a bowel movement (we are hoping for it to happen tonite) and get up to a complete feeding schedule (2 ounces every three hours) and she will be able to come home. According to her surgeon, resident physicial, supervising physician, nurse practitioner......amoung others, this should happen before THIS SUNDAY EVENING!!!!!!:D :D
This is more than 4 weeks ahead of schedule. Now this I am thankful for!!!!!!!!
Thanks again for all your prayers and support. With all your help, it looks as if we have beaten the odds here. My little miracle baby will be home this week!!:D :D
I will keep everyone posted on the C.F. test results as soon as I have them:cool:
Steve
Great news..Lets hope you have a bunch of dirty diapers to change soon.:)
There will be some HAPPY holidays this year!

[MRS FLYIN VEE]

i have been reading all the updates and i am so happy to hear about Faiths progress and we are still praying for all of you. and we are hoping she will be home soon.. :) GOD BLESS.. and also glad to hear you are both finally getting some rest.. ;)

[6 Dollar Boat]

Originally posted by rvrtoy
At this point we are waiting for the C.F. test to come back. I am VERY confident that the results will be negative.
I have also been following this thread, and all I want for X-MAS is to see a big NEGATIVE in one of your posts very soon!!!:)

[rvrtoy]

Sorry for the delay in my updates. With the holiday, My wife and I have been spending every waking hour at the hospital. Some comatosed(sp) sleeping hours as well.
Thanksgiving day: When we arrived at the hospital we were shocked to learn that Faiths feedings had been stopped. The doctor informed us that Faith had some "suspicious gas patterns" and had not stooled in 21 hours. This ment she has some bloating in her small intestine and stomach. Because of this they had to put the suction tube back into her stomach. This lasted until the next day when her bloating seemed to be gone.
The day after Thanksgiving: The suction tube was once again removed and feedings resumed around 3pm. All bloating seemed to be under control and no infections have been found. After her 9pm feeding stooling seemed not to be a problem any longer.:)
Today: Feedings are still going well. She is up to half a normal feeding and should to a full feeds by the end of the day tomorrow. Faith is now spending more time awake and is getting some quality bonding time with mom and dad. This makes us VERY happy. We still have no idea when she will be home. We ar praying it is soon.
We are still asking for prayers over a couple of situations. 1. Her blood level is starting to get low...partially because of all the tests that have been ran. If they continue at this rate they may need to trasfuse her. Obviously we are praying for no transfusion. 2. We still have not recieved the results from the C.F. test. Because of the holiday, The results may be delayed until monday or tuesday. We are still praying for a negative result.
Once again, Thank you all for your thoughts, prayers and support. It means alot to me and my family.
rvrtoy aka Steve

[JetBoatRich]

My heart goes out to her and you and your family as I read your post. I think about Faith throughout the day and only wish her to be able to come home with you two.
Steve let your wife know we are behind you two and hope Faith will be at your home soon with the family.
Take Care,
Rich

[victorfb]

im not (yet) a parent so i can only imagine what you and your family are going through. but do know that you have alot of friends praying for Faith. me included. stay strong, think positive, well in this case "negative", and little Faith will be coming home with you soon. :D

[Jungle Boy]

Your situation is on mind often during the course of a day. It's a funny thing how people that don't even know each other in person can become so connected through an internet chat board. I'm sure that everyone on this board that has read this post is really hoping for the best for you guys and your baby. It must be just hell on you guys waiting for her test results and seeing your baby with problems. They are so helpless at that age. But I'm sure she will be fine and will grow stronger because of this introduction into the world. Good luck to you all.

[MsDrmr]

rvrtoy
I have been praying for Faith as has my family. I bet the set back was frightening but glad she bounced back quickly, she is being prayed for and so are you and the mrs.....thanks for all the updates, may she be home very soon.

[eliminatedsprinter]

Originally posted by Jungle Boy
Your situation is on mind often during the course of a day. It's a funny thing how people that don't even know each other in person can become so connected through an internet chat board. I'm sure that everyone on this board that has read this post is really hoping for the best for you guys and your baby. It must be just hell on you guys waiting for her test results and seeing your baby with problems. They are so helpless at that age. But I'm sure she will be fine and will grow stronger because of this introduction into the world. Good luck to you all.
This is correct. I have never met you. But I am very conerned and hope very much the result of the test will be negitive.

[rvrtoy]

I just got word that Faith will be discharged from the Hospital at 12:00pm today.:D :D All of our prayers have been answered with one exception. The C.F. test is still pending. The doctors do not expect a result until late this week or early next week. I do expect that prayer answered also.
Her healing process was expected to take almost the entire month of December. She has healed at a miracules rate thanks to the thought and prayers of all of you.:D :D
My family thanks you all so very much. I will try and post some pictures later today. I will also keep you all informed after we receive the "negative" results from the C.F. test:eek!: :eek!:
rvrtoy and family

[Screaming Pete]

RVR TOY, Screaming Pete and Family still keeping the Faith and has been in our dinner prayers over the long weekend. Take care of Mom and the Little one ....
Pete

[Stray Cat]

I dont know you an you dont know me but there is a family in Arkansas thats praying for a neg on Faiths test result. Keep the faith

[GrapeApe]

Steve, I am glad to hear that you will have Faith home this quick to continue her healing, It's great news. I look forward to seeing some pics, and will be praying for that negative test result.
Take Care,
*** Grape Ape ***

[phebus]

I think about Faith all the time, and I pray for a negative test for her. On the positive side, I bet you never thought about how much love you have to give, and in return, how much love you can recieve. Adversity has it's positive side. Take the gift of love, and cherish it every day of your life.

[76BARRON]

Originally posted by rvrtoy
I just got word that Faith will be discharged from the Hospital at 12:00pm today.:D :D All of our prayers have been answered with one exception. The C.F. test is still pending. The doctors do not expect a result until late this week or early next week. I do expect that prayer answered also.
Her healing process was expected to take almost the entire month of December. She has healed at a miracules rate thanks to the thought and prayers of all of you.:D :D
My family thanks you all so very much. I will try and post some pictures later today. I will also keep you all informed after we receive the "negative" results from the C.F. test:eek!: :eek!:
rvrtoy and family
I too will wait for the negative results!!! but I will continue to kneel just in case!! because that's what a father does! so far I see 88+ other familys living thru this with you!! we are all in this together!! I think we ALL will give a big sigh of relief soon. I hope !

[MsDrmr]

In the midst, take a moment and thank God for hearing our prayers and answering them with the answers you needed. What a blessing, this little girl is gonna be a tough one(she is already proving that). I will continue to keep her and you in my prayers, and we too are hoping for a negitive result. May the blessing contiue to come your way.
YEAH!!!!!!!!!!! SHE'S COMMING HOME

[Miss BK]

Count us in as another family praying that Faith Nicole tests NEGATIVE on the CF test. This must be pure hell on your family having to wait so long.......
That disease runs in our family - my brother and my sister. :(
In the old days, they used to have the mothers do a "salty kiss test" to detect if the baby had CF. Because CF sweat glands secrete abnormally, the skin of a CF patient has a distinct salty taste.
But not all salty skin is for sure CF either. But if baby Faith doesn't taste salty, it may ease your mind a bit.
We are praying like mad that she's free and clear.
With all our heart,
The BK family

[Charley]

Wow! I sincerely can't imagine dealing with a situation like this, as a parent it is my worst nightmare. It sounds like things are looking up, and that is fantastic news but you can still count on many prayers for little faith and your family from the Guest family. god bless

[Johnwithjm]

Steve I have been praying for you and your family hope all goes well.

[rvrtoy]

Faith is at home now. We have had two nights with her and we are very pleased with her increadible recovery. The only problem I have is there is no call button at her bedside.
So now the Mrs. and I have to get up and take care of her.:D
I will keep everyone posted on the results for the CF test.

[MsDrmr]

CONGRATS..........I can't imaging the joy you must be feeling having her home now. May this be only the beginning of your blessings

[rvrtoy]

The Mrs. just stopped by the showroom here today. She just informed me that Faith has been diagnosed with Cystic Fibrosis (sp). We have an appointment on friday to see a specialist for care and counseling.
WTF...why were all the other prayers answered and not this one. I feel like a fog has set in around my head right now. I will have to write more later:mad:

[Waldo]

Very sorry to hear that. We will continue our prayers (hopefully everyone else will also) as they may be answered in ways we might not understand yet. I am starting a men's group this weekend and will include these prayers among our requests. Godspeed!

[Screaming Pete]

Steve, Take it 1 step at a time, This is not the news everyone wanted to hear, but that Doesn't mean all of Us will quit praying for Faith. Early detection is probpley a good thing. Friday must seem like a long time away.don't know what else to say
pete

[roln 20s]

I've been praying for Faith and you guys. I've been very touched by this story and wish you all only the best. Sorry to hear about the CF diagnosis, but hang in there--all of my thoughts and prayers are with you. Keep your head up.
Best wishes and many prayers-
Patrick
"Roln 20s"

[MsDrmr]

I could not be more sorry about the news, I wish you and the mrs the best as well as Faith, keep praying, and we will too. All prayers are answerd sometimes just not what we want. One day at a time now, first things first.
Let me know if there is anything I can do to help out. Honest, not a hollow offer.

[Outnumbered]

Very sorry to hear that news. We will all keep her in our prayers and thoughts.
On a positive note, she is lucky to be born in this time. Medical advances are growing by leaps and bounds. Hopefully by the time she is old enough to know what CF is all about they will have a cure. I know people are working on it contantly. Progress is always being made. Keep strong and stay positive.
God Bless,
OL

[Stray Cat]

:( Rvrtoy Ya'll gotta hang in there, its gonna be tough but Faith seems ta be a very strong little girl. Ya'll are all in our prayers. Medical achievements come everyday. My youngest son has ALL,(acute lymphsitic lukimea) still cant spell it,he was diagnosed when he was 20,since that is a childhood illness they told us at first that his chances were not good but with experimental chemo he is in remission and has been for almost 2 yrs. Thank God and Childrens Hospital of Little Rock.

[SandbarScot]

My heart goes out to Faith and your family. Keep posting updates. We're all pulling for her.

[Jungle Boy]

I'm sorry for your sad news, but as was written in previous posts, the medical field has a lot more knowledge now a days than in the past. I'm sure that you guys and your baby will be fine. I can't believe this, but I'm shedding a tear for you guys right now and I don't even know you. Good luck and I hope things go well.
Dave

[Miss BK]

My heart just breaks for you and your family and little Faith.
I doubt if anything I post with offer any console to you, but just wanted you to know that my older sister and older brother also had CF. Unfortunately, my sister's doctors refused to believe she had CF (there was no prior CF in our family) so they treated her for other things instead. :( Even though she never got any treatment, she still lived to be 20. (this was over 30 years ago)
Doctors gave a very bleak prognosis for my brother too.....
BUT!!!
My brother not only was an outdoorsman who loved to scuba dive and go white water rafting, but even started racing powerboats at age 24, and then he even got married! He even held a job until he was in his late 20's. He and his wife even took in a foster daughter to raise.
All these things the docs told him he would never be able to do. He lived to be 32 even though docs told us originally he would not make it out of his teens.
The one thing that was positive in all of this is that, unlike most people, he lived life to the fullest and never wasted a single moment.
Also realize this all happened way before the advancements in the current treatments of CF. They've come out with all sorts of new drugs and therapy's now that make life for CF patients even easier and longer.....
And with the gene therapy trials going on right now, I have faith that there will be a cure just around the corner! Faith is an excellent name for your little girl!
My advice is to ignore all those statistics they may tell you because you just never know what fate has in store. A person with CF can still live life to the fullest - and often achieve more goals than any of their friends. My brother is a testament to that!
Keep the faith!

[Windy]

If there is anything we can do for you please just ask. :(
Hugs,
Windy

[GrapeApe]

Steve, We will continue to pray for Faith. Medical Miracles happen everyday, and she seems like a very strong Girl who can pull them off. She will continue to be in our thoughts and prayers.
*** Grape Ape ***
Let me know if there is anything that I can do to help out in anyway..

[rvrtoy]

Once again Thank you all for your encouraging words, thoughts and prayers. I do know that everything will eventually work out in the end but the road getting there will be filled with turmoil, uncertainty, frustration and anger.
I have, over the past two days, been shopping for health insurance. I have coverage for my wife and family however, my wifes insurance only covers normal costs associated with delivery. It does not cover any out of the ordinary expenses (extended stays in ICU or surgical procedures). I am looking for new coverage to cover my family. The problem I am running into is that no carriers will cover Faith because she was born with C. F. I am now stuck with medical bills that would choke a mule. I am not looking for sympathy, just maybe some good advice or a place to find insurance that will cover Faith from now on. Any and all advice is welcome.
Thanks again for your support.
rvrtoy and family
By the way...Keep the funny threads going. It makes it much easier to smile in the morning as I read them.

[eliminatedsprinter]

I am sad to read this news. I am going to contact some of the Docs that I work with and bone up on the most recient news on CF and see if I can find you any positive info.
I don't know what you do for a living, however, last I heard, if either one of you becomes a fedral employee the family insurance coverage will be good for all of you with no exclusions for pre-existing conditions. So, for example, if your wife was a nurse, she could hire into the V.A. and get family coverage that would cover faith. Again, I have no idea what your job or jobs are I just know that federal employment has been a way of getting family health coverage without exclusions.

[Miss BK]

http://www.cff.org/chapters_and_care_centers/index.cfm?state=CA
The link above will give you actual CF care centers in California.
For help with getting health insurance for a CF child, contact your local CF Foundation chapter:
San Diego and Imperial County Chapter
San Diego, CA
p: (858) 578-2945
http://www.cff.org/sandiego.htm
san-diego@cff.org
Contact: Executive Director: Ms. Michele Mason

[Big Bear]

My prayers are with you and your family, especially little Faith. My son, with no warning whatsoever, was diagnosed 7 years ago with testicular cancer and immediately went in for emergency surgery to remove the tumor and his right testicle. He had helped me build my then pride and joy, a 1970 Chevelle SS (the toy I recently gave up to buy my first boat) that was bad to the bone. When he woke up in the recovery room that night, he looked at me, smiled weakly and said, "see Dad, I told you I would give my right nut for the Chevelle. Now you gotta give it to me." What a way to relieve the stress I had been going through! 7 years later he is just fine, (side from being a typical 23 year old knucklehead) and has fathered a beautiful 4 year old daughter. I hope and pray you and your daughter have a similar happy ending!!!!!
Big Bear

[MJ19]

I have been checking in for updates and sending prayers!!! I was happy to hear Faith was with you and then crushed to hear about the CF, so I can only imagine your feelings. I'm sorry and again still sending loads of prayers!
I don't have any words of wisdom on the insurance other then I thought it was illegal for an insurance company to decline you, they can charge more and maybe a crazy amount, but I thought they couldn't actually turn you down??? Anyone know more about that?
Sending more prayers!!! :)

[JetBoatRich]

I am very sorry to hear about Faith, our prayers will continue to be with your family. My eyes watered up as I was just reading through all the replies, there is a lot of support here for you and the family.
Take care and let us know what we can do

[Miss BK]

MJ19,
I am going thru the same problem with health insurance companies refusing coverage here in Indiana. Maybe California is different. I wish I could help more, but I just haven't had any luck so far.
I know in some states they can refuse to cover you for any pre-existing condition, because they are refusing me for a 4 yr old injury. (They search 5 years back in your medical history). The 1997 law says they can't make an exclusion for a pre-existing condition last longer than 12 months. So what they do is just refuse to insure you completely.
The insurance companies say there is too much potential for me to need more medical care in the future (bulging disc), so they don't want to take that risk at all. :(
Some states like Indiana, do offer an individual "High Risk" insurance for the uninsurable like me, but the premiums are just that: Premium!
Most people don't understand what a disaster is going on with the health insurance industry. But when it happens to you, and you can't get insurance, it's tragic.
To rvrtoy;
I still would check with the CF Foundation. I'm sure they have other families who have found themselves without insurance coverage. The hospital also may also know which companies are the best in your situation.
Also ---- some policies automatically cover a new born child - you have like 30 days to get the baby added. Check to see if your wife's policy has anything about that.

[MJ19]

Yeah, I guess they can turn you down...I just thought I read something about it changing...however, Miller tells me I'm wrong...and he's always right ;) so it must be true...I must be wrong. :(
However, I was thinnking about Faith all night and this morning we were talking about her and the thought about "Shriners" came up...I wonder if the Shriners Hospital could do anything for Faith? :confused:
Here is a link...you could e-mail them and ask if they can help in any way. Help with costs, help with care, help with supplies, medication, etc... doesn't hurt to ask! :)
For Shriners Hospital Information Click Here (http://www.shrinershq.org/hospitals/index.html)
Our morning conversation also brought up the thought of a free hospital for children with all conditions. Are there any out there you can think of other then "Shriners"? :confused:
Let's put our thinking caps on for little faith. :D

[summerlove]

There's nothing else I can say but continue to love her every day. I'm sorry for the news on the CF front but I am also encouraged by the medical improvements over the last few years.
May God bless you and your family, especially Faith Nicole!
Rick

[MJ19]

http://www.cfservicespharmacy.com/insurance_providers/
Check this CF site out...it is about insurance carriers that take CF families...I'll keep my thinking cap on and will post things as I find them. :)

[rvrtoy]

Originally posted by MJ19
http://www.cfservicespharmacy.com/insurance_providers/
Check this CF site out...it is about insurance carriers that take CF families...I'll keep my thinking cap on and will post things as I find them. :)
Thanks MJ19. I will look into this site and see what I can come up with.
It is very hard to come up with ideas when your head and thoughts seem to be in a fog.:frown:
Thank you for all your suggestions and please keep them coming.:)

[prosthogod]

Here is a suggestion for health coverage.( By they way I've following along and was devastated as you were to here the news) I am a small business owner(dentist) and here in Az. there is a company called DHR, which is a co-employment agency. The way it works is because of the large number of business' they represent they offer benis like a large corporation.Like health insurance that doensn't reqire med history. My employees are still mine and DHR takes care of all the paperework. I pay a small fee for this service but that is more than made up in happy employees. I have 2 employees that are cancer servivors and would be unable to obtain insurance without this. I don't know your families employment situation but ther are many ways to do this. Contact me and I can give you more info if you like.

[MJ19]

I read that the average life span is 33.4 years of age now and if it's any hope to think of the amazing break throughs in medicine that can occure in 30 years...there is most definately hope for a very long full life ahead for little faith!!!
Keep your chin up and don't let it get you down...she's a fighter and with strong parents like yourselves she will prove to be an amazing miracle child!!!
Here is another site to contact for information or support.
http://www.nlm.nih.gov/medlineplus/cysticfibrosis.html
And later in life a web site like this might give Faith a group of supportive friends dealing with the same issues.
http://kidshealth.org/kid/health_problems/heart/cystic_fibrosis.html
If I find more on the insurance, I'll let you know...you are in my thoughts and prayers!!!

[Miss BK]

The Crippled Children's Hospital in Phoenix (now called Children's Rehabilitative Services) helped my parents out a lot back in the 1970's and 80's. They rented the respiratory therapy equipment to my parents on a "pay what you can" basis. And the hospital paid for most of the medicines too.
This one wasn't a Shriners hospital. I'm sure they have something similar somewhere in California. The CF foundation would know.

[eliminatedsprinter]

The advice you have recieved on contacting the CF foundation is very good advice. Many people with CF do not become symptomatic right away. It is my understanding that when the symptoms occure at an older age they tend to be less severe. In cases where there are severe life threatening symptoms a lung (and I believe pancreas) transplant are now being performed. This is something that we are getting better at all the time and may greatly improve that 33 yr life span that was mentioned earlier.

[riverdog]

I am very sorry to hear about Faith, I will continue to pray for Faith and for your family. As far as insurance is concerned, California is an "accept or reject" state. That means that they have to insure all of you, or decine you. No "prexisting conditions". If your wife has a group policy through her work it has to cover Faith and cannot decline her, even with CF. The law says that they have to take the whole "group" and cannot pick and choose. I would have your wife talk to her employers HR person or have the owner contact the insurance agent of record.

[rvrtoy]

Originally posted by riverdog
I am very sorry to hear about Faith, I will continue to pray for Faith and for your family. As far as insurance is concerned, California is an "accept or reject" state. That means that they have to insure all of you, or decine you. No "prexisting conditions". If your wife has a group policy through her work it has to cover Faith and cannot decline her, even with CF. The law says that they have to take the whole "group" and cannot pick and choose. I would have your wife talk to her employers HR person or have the owner contact the insurance agent of record.
That is a great point about an "accept or reject" state. The difference is my wife is a homemaker. She doesn't work and I am an independant contractor. My wife is on an individual plan and I understand now that there is a major difference between group plans and individual plans. Thanks for you insight. I'm sure this will all work out in the end...one way or another. rvrtoy

[riverdog]

rvrtoy, you might be able to form a small group with each of your family members and all would be able to enrole under group laws. Also the HIPPA law guarantees you can get insurance for Faith. It is kind of like "assigned risk" for health care.

[Miss BK]

rvrtoy and riverdog
I went digging into the HIPAA site:
http://cms.hhs.gov/hipaa/hipaa1/content/qa-con.asp
..and found this paragraph. Not sure what "special enrollees" are, but sure hope this means Faith can be added without any problems.
7) How are pre-existing condition exclusions applied to special enrollees?
For each triggering event, a special enrollee is regarded as a regular enrollee and not a late enrollee. Therefore, the maximum pre-existing condition exclusion period that may be applied to a special enrollee is 12 months. The 12 months are reduced, day for day, by the special enrollee's creditable coverage. In addition, a newborn, adopted child or child placed for adoption cannot be subject to a pre-existing condition exclusion period if the child is enrolled within 30 days after birth, adoption or placement for adoption and has no subsequent significant break in coverage after that time.

[Miss BK]

Yahoo! This sounds great!
(Unless these rules only apply to group plans and not individual - that's what I can't figure out yet )
Found this on the same page as above. Maybe someone else can decipher if Individual plans are included with this?
5) What events trigger a special enrollment period?
Special enrollment is required in two situations.
a) You or your dependent lose other health coverage; and
b) You get a new dependent through marriage, birth, adoption, or placement for adoption with you.
You get a new dependent through marriage, birth, adoption, or placement for adoption with you.
If the triggering event is a birth, adoption or placement for adoption, the child, the employee, and the employee's spouse are entitled to special enrollment, either individually or in any combination.

[rvrtoy]

Great info Miss BK. I will be looking more in depth into this in the morning. Thanks for your help!!:) :)

[Kilrtoy]

Sorry to hear that, Keep strong for the wife and baby, we are here for YOU and all of your family.....

[Outnumbered]

Originally posted by rvrtoy
That is a great point about an "accept or reject" state. The difference is my wife is a homemaker. She doesn't work and I am an independant contractor. My wife is on an individual plan and I understand now that there is a major difference between group plans and individual plans. Thanks for you insight. I'm sure this will all work out in the end...one way or another. rvrtoy
Rvrtoy,
Small group is the way to go. I was forced to change insurance when my wife was prego back in 2000. At our agents recommendation, we started a small group with our family business with only TWO employees. Get a DBA for your business, put Mrs. Rvrtoy in the group as an employee/owner, and hook up some insurance. We are with Universal Care and it has been pretty good to us.
PM me if you need more details.
OL

[rvrtoy]

Old Lavey
That is one option I am currently looking into.
What type of cost is the plan you have and what are the deductables?...If you don't mind me asking.

[Outnumbered]

Originally posted by rvrtoy
Old Lavey
That is one option I am currently looking into.
What type of cost is the plan you have and what are the deductables?...If you don't mind me asking.
No problem. Its an HMO, co-pay only, not a percentage plan. It runs about $560 per month for the 4 of us. Not cheap but the coverage is excellent. We don't have to worry if the kids get a bad cold, just take em in and pay $10. Co-pay on the birth of my daughter was $50. Meds are like $25. If you are interested in getting a quote I will dig up my agent's #.
OL

[76BARRON]

So sorry to here the bad news. It looks like you now have your hands full with all the details with insurance and medical !
but I know you will rise to the occasion! I knew you would be a
good father but now you have the chance to be a GREAT FATHER!
and that makes faith a very lucky little girl. I wish there was somthing I could do to make things better.But being a mortal man has it's limits.now get too it! greatness doesn't come easy!