this is the Cystic fibrosis pipeline. Meaning these are the drugs currently available or going threw testing to become avialable. this is where your money goes when you donate to the cystic fibrosis foundation. to helo find a cure for my daughter.
Sunday, January 2, 2011
Saturday, January 1, 2011
Was thinking today, well not just today but you know since the holidays, ...... sometimes i feel like people even those closest to ya somehow don't understand how having a child diagnosed with something like CF changes your entire life. ALL of it- how you see things, how you walk threw the grocery store in fall or winter or any time for that matter. When families gather together and shoppping is getting done and alot of people are sick, its hard because you are trying to stay well (you and your child) but still have fun with family and get everything else taken care of. But CF is something that is always in your mind no matter where you go or who you are with.
I have a friend that is a parent of a non CF special issue child and we talk and at least when we talk i feel like I'm not totally crazy because she has same obstacles. And its nice to see her attitude too- makes me check mine sometimes.
Everyday we do 1 hour total of breathing with total 3 breathing treatments (two in morning and one at night) vitamins, enzymes with every meal and snack, zantac twice aday, and right now for the for one more day bactrum twice a day. not to mention the germx we go threw. Along with all that we also watch people around us that cough or may so signs they are sick.
I do put my faith in God who takes care of her. There are things we do here on earth cause he whispers in our hear or because HE gave us wonderful doctors who give us good advice. yes we do try to keep her from germs that can get her sick. She is on a schedule. Think she likes it that way, they say that kids do better when they know what to exspect. Having good rest aids in her staying well as it would everyone.
People have told me i don't smile or i am to serious, or that they want me to enjoy it. I am fine in my own skin (i think im happy) but what they don't understand is that when other people are around and they don't wash their hands and use the germx i will be more watchful. I just feel sometimes if others would be receptive and just do what i need them to do often then i probably would be more laid back when people are around. Cause CF doesn't just effect the parents and grandparents it effect how all the persons loved ones handle things.
This time of year is hard on alot of families. But it gets stressful for me because illness starts spreading. every year there are KIDS getting seriously sick with CF. some dont even make it others get lung transplants. And i will do everything i can to make sure that we stay wellso that when the new drugs that are soming down the pipeline get released we are ready wiht NO lung damage. That's why on FB i will post the cover your cough and don't go out in public if you are sick and expose people. You never know who is standing behind you in line somewhere. It could be a cancer patient, a CF child /adult, any one with special issues that has a perfectly good imune system just doesnt need to get sick because of their special health situation. If all would do this we ALL could live more normal lives.
I have a friend that is a parent of a non CF special issue child and we talk and at least when we talk i feel like I'm not totally crazy because she has same obstacles. And its nice to see her attitude too- makes me check mine sometimes.
Everyday we do 1 hour total of breathing with total 3 breathing treatments (two in morning and one at night) vitamins, enzymes with every meal and snack, zantac twice aday, and right now for the for one more day bactrum twice a day. not to mention the germx we go threw. Along with all that we also watch people around us that cough or may so signs they are sick.
I do put my faith in God who takes care of her. There are things we do here on earth cause he whispers in our hear or because HE gave us wonderful doctors who give us good advice. yes we do try to keep her from germs that can get her sick. She is on a schedule. Think she likes it that way, they say that kids do better when they know what to exspect. Having good rest aids in her staying well as it would everyone.
People have told me i don't smile or i am to serious, or that they want me to enjoy it. I am fine in my own skin (i think im happy) but what they don't understand is that when other people are around and they don't wash their hands and use the germx i will be more watchful. I just feel sometimes if others would be receptive and just do what i need them to do often then i probably would be more laid back when people are around. Cause CF doesn't just effect the parents and grandparents it effect how all the persons loved ones handle things.
This time of year is hard on alot of families. But it gets stressful for me because illness starts spreading. every year there are KIDS getting seriously sick with CF. some dont even make it others get lung transplants. And i will do everything i can to make sure that we stay wellso that when the new drugs that are soming down the pipeline get released we are ready wiht NO lung damage. That's why on FB i will post the cover your cough and don't go out in public if you are sick and expose people. You never know who is standing behind you in line somewhere. It could be a cancer patient, a CF child /adult, any one with special issues that has a perfectly good imune system just doesnt need to get sick because of their special health situation. If all would do this we ALL could live more normal lives.
Saturday, December 11, 2010
Well the last few days Gracie has had a cold. We are on Zyrtec. I would hate to see what the last few days would have been like if she had not been on the Zyrtec. I have felt to effects of the cold too. my first cold in forever.
The last few days have been emotional for me. my adopted daughter, Angel, graduated nursing Friday and i really felt i SHOULD'VE been there. (background): We had her live with us for two years in her teenage years and lost contact for 6 years or so. We reconnected this year and like nothing changed. her parents died in car wreck 16 years ago. I am soo glad she has said she considers me her mom. I have always loved and wanted what is best for her. Not being there for her at her pinning and graduation was hard. Cried alot that day. Work has been busy and with Gracie having cold and me not feeling the greatest its been just emotionally stressful. And with Christmas coming up- I'm hoping everyone will be well so we can all have a normal holiday all together.
The last few days have been emotional for me. my adopted daughter, Angel, graduated nursing Friday and i really felt i SHOULD'VE been there. (background): We had her live with us for two years in her teenage years and lost contact for 6 years or so. We reconnected this year and like nothing changed. her parents died in car wreck 16 years ago. I am soo glad she has said she considers me her mom. I have always loved and wanted what is best for her. Not being there for her at her pinning and graduation was hard. Cried alot that day. Work has been busy and with Gracie having cold and me not feeling the greatest its been just emotionally stressful. And with Christmas coming up- I'm hoping everyone will be well so we can all have a normal holiday all together.
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