My son was diagnosed last November, and I have yet to talk with any other moms who are dealing with CF. I would really appreciate some input. Thanks!
Hi, my name is S.. My son Mark is 9 and has CF. He was disgnosed when he was 2. My email is ____@____.com if you want to talk sometime. I completely understand about redefining the word normal.
we aren't dealing with CF ,but have 2 grands who have JD ...juvenile diabetes .... so we along with the parents had to find a new norm also ... they were diagnosed 5 yrs ago and are doing very well.... the best advice we got was to take one day at a time , live it to the fullest and not worry what will be or could be in 5 yrs from now with them ..In reality you have to look ahead , but the 'what if's etc' part we can't dwell on ....I understand your 'new' feelings and will pray for you .Its not easy to watch your child or grand dealing with such ..... we moms are fixers' and want the very best for them ..... God bless you as you deal with this every day ...... I don't think I gave you any help, but wanted to let you know I'm here if you need someone to listen ...Mir B
My husband is 24 years old and we just found out that he has CF. I know most people would ask why he did not find out while he was a child, but he has it in his reproductive system not his lungs. This has caused him to be infertile. We have been trying to be possitive about what is going on. I could only imagine what you are going through as a mother
My friend is dealing with this same thing. I dont know where you are located but i could see if she would allow me to give you her phone number she lives in Ada, Oklahoma. Let me know if that is something that interests you. Her son is 10 months old.
Contact Haley's Mom at this website....http://www.caringbridge.org/visit/haleypalmer Haley lives here in Owasso and has been through the ringer. Her Mom can give you lots of info and resources. Her Mom's name is Jennifer (goes by Jenn).
H.,
I grew up with CF in my family, so somewhat know what you're dealing with although both my children are cf free. If you are in Tulsa area, the following link may be helpful. They
could probably even direct you to other groups etc.
God bless you & your little angels.
http://cf-solutions.org
There is a website you can check out, and it is called caringbridge.org. There are people from all over who are in the same situation, and they can keep you updated, and you can keep others updated on everything that's happening. My cousin's daughter was born with a heart defect, and they used this website. There will probably be a lot more moms able to help with advice through thst website, because it is set up specifically for that reason. Good Luckto your family!!!!
Hi! I am a mom of two children with CF, my son is 9 and my daughter is 12. I am here for any questions, concerns or venting you may have!
T. J in Arkansas
____@____.com
I am a grandmother of a CF child not Mom, but I do know how hard it is. They have come so far in the last 20 years we are just praying for a cure. My grandson is not quite 2. Just learn all you can about this awful sickness.
K.
Hi H.,
My youngest daughter has Congenital Muscular Dystrophy so I can totally sympathize with how you feel. You never know what is going to happen next. My daughter uses a machine called the Vest that from what I understand a lot of CF patients use to help keep thier airways clear. I live in Louisiana and here we have a program for children birth to 3 years old that is called Early Steps. It is an early intervention program that will help you get the services that you need for your son thru the state. You may want to check in to that if one of your sons docs hasn't already mentioned it. Our new definition of normal is doctor visits every 3 to 6 mos and watching every cold and cough to make sure it doesn't turn in to anything worse. Please feel free to email me if you want to talk. I understand how nerve racking and heart breaking having a special needs child is.
