Luke update

Im so sorry too hear that he tested postive ....im not familiar with what options you have there but i am familiar with the disease so if u have any questions please feel free too pm me .....my nephew has never been hospitalized for this thank the lord .....you and your husband will have to be trained too do the back beatings too break up the mucous in the lungs ....my whole family has had this training and is part of Chases daily regime as well as there several pills he takes on a meal basis even if it is just a glass of juice ....i dont think u are selfish at all for not wanting too take the chance of having another child with CF ....i would be the same way...take care

I am so sorry Courtnie. I had no idea any of this was going on. You are such a strong woman, and Luke is lucky to have you as his mother. PM me if you need anything Hang in there *hugs*

I am so sorry Courtnie. You, Luke and your family will be in my thoughts and prayers.

Wow, I'm so sorry I'm not sure what to say so I'll just leave it at that & tell you that Luke & your family are in my thoughts! Stay strong!

I am so sorry.

I knew a girl that was 32 years old with CF. She was quite the inspirational person. She was doing pretty well being 32 years old with CF. It's amazing how far medicine has come. I do hope you can get in that trial. I would think your chances are good because Luke is so young.

I encourage you to join a support group for parents with children of CF. Those would help tremendously.

Please keep us updated. I know it may take you awhile to digest this news.

On another note: Almost two years ago, we were going to adopt a little two year old with CF through the foster care system. It was between us and one other family. The other family was chosen probably because Nate was two years old at the time. so, I do strongly believe in adoption. We will probably adopt a child in a few years as well.

I am thankful, though, that you have some answers and Luke can start to get the treatment he needs. I can't imagine being in your position right now. I wish we all could just give you and your family a big hug right now.

you dont know me but im sorry to hear about his test results. I googled CF out of curiosity and found this:

"Is there any help available to pay for CF care?

Many people with CF use Cystic Fibrosis Services, Inc., a mail-order specialty pharmacy that is a subsidiary of the Cystic Fibrosis Foundation. It provides access to CF medications and offers patient assistance programs, as well as helps resolve complex insurance issues. CF Services is a participating provider with more than 5,000 insurance plans and nearly 40 state and federally funded programs. Visit www.cfservicespharmacy.com or call (800) 541-4959.

Pharmaceutical companies often offer a range of patient assistance programs—from giving out samples of new CF products, to providing free nutritional supplements, to accepting voucher payments for medications. Find out more information in the Foundation’s archived Web cast entitled, " Patient Advocacy: Issues and Answers for CF.”

http://www.cff.org/AboutCF/Faqs /

I'm sorry to hear this! This is going to be okay though, you will get throught this you are a strong woman. I'll keep you and your family in my prayers!

courtnie, im so happy you guys figured out why hes so sick, i just wish it didnt have to be this, i know we dont talk a whole lot but i like you, you are a really good person

i dont know much about cf but i do know about neocate and constatn hospital trips, val has a digestion problem severe reflux and severe allergies (nothing compaired to cf but still the trips are constant so i can relate a little)

if you ever EVER need anything please send me a messege, if you have msn messenger i can give youi mine, if youd like

(you seem to be handleing this news very VERY well)

:hug:

Everyone you are great! I really do appreciate all of the support that you are giving me.I am making his appointment once I get to work and the cf center opens.

Idony (I so know your name it just slipped right now)- have you found anywhere that you can buy neocate without buying a whole case? Walmart can't order it and Walgreens makes you pay for like 10 at a time. I really don't want to buy that many at a time.

cant your dr perscribe it so it is caharged via insurance???

You sound like such a strong, take charge person. You've already got the ball moving in a positive direction. Please remember to be nice to yourself. This is going to be a huge adjustment for everyone - knowing what the problem is makes dealing with it so much easier.

That said, check into the Ronald McDonald house. They house families of children who need hospital care. There is no reason why you should have to pay for a hotel when you can stay for free.

I'm not sure about the formula, but the WIC route and the prescription talk sound like they could be some options. Talk to the insurance provider and find out what they will cover. There should be many state programs available to you.

Good luck. (((hugs)))

Courtnie-I'm so sorry about the diagnosis but hopefully this will at least get you guys on the right track. At least you know what you're up against now. You can do this. I also knew a CF patient that was in her 30's. I worked on the pediatrics floor at our local hospital. She's an amazing person. Just stay strong and let us know if you need anything.

im sorry i think you're doing the right thing by adopting next time instead of risking another child suffering with this.

I'm so sorry your little guy has to go through all of this. You are a lot stronger than I could be with this news....I'll keep you all in my thoughts.