Just got the News!!

[addysgramie]

Hi! I am Grama to Addison, daughter of ampetrie. I would like to see info. from other Grama's and Grampa's on how they handled their grandchilds initial diagnosis. As Martha has stated we are all devastated at this point and in the denial and why us stage. Addison appears perfectly healthy and is symtom free at this time. We are all still having a little trouble getting our heads around this. I don't know whether to be glad it isn't something worse or heartbroken that I can't fix this one. It is not only my grandchild but my child that is effected. Any input would be helpful...Addys-Gramie

 

[dyza]

hi try and just read through some of the posts in the family section just now, try and keep out of the adult section, obviously they talk quite openly and it may scare you a little. The peeps on the family section are very wise and welcoming and you only need ask, you will get many varied answers and it will not belong before you too feel part of the community

CRaig

 

[Seana30]

welcome addysgramie!

I know this has been said many times before....but it is true............it gets easier with time.

When you first get the diagnoses your brain is trying to ingest so much information that it becomes overwhelming. Time and information makes it easier.

My advice is beware of researching CF on the web. Sites like this are wonderful because you are speaking to people affected by CF. I remember when my daughter was diagnosed I googled Cystic Fibrosis. After 6 hours of research I was in tears. The written statistics can be terrifying, but you can't always believe everything you read.

Take care

Seana

 

[NoExcuses]

My advice is this. Get to know EVERYTHING about CF. The in's, the out's. How things work. How the body doesn't work. Medical treatment options.

Being proactive and knowing all about my meds and health has kept me healthy!

 

[Alyssa]

Hello,

Did you say she doesn't have any symptoms yet but you do have the diagnosis of CF?

You could read my blog (the first entry) It goes into detail about my kids, who are very mildly effected. It could give you some idea of how things *might* be similar with your granddaughter -- with CF things can be so different for each person, it's hard to say what will happen for sure, but it's always nice to hear from the people who have fewer complications.

 

[Jane]

Hi Addysgramie!

I'm so glad you are here, it will be such a help to Martha and Addy that you are well-informed. My mom always says she wants to do more to help and to understand, but down deep I think she'd prefer to be in the dark. I wish my mom would come on this site too.

You will read a lot about CF, some will apply to your granddaughter, some won't. Learn what you can, but don't get too alarmed. Take one day at a time. Ask lots of questions.

Welcome

 

[anonymous]

Welcome Addysgramie!

Sorry I'm not logged on, was just looking at threads when I came across yours.

I'm Ashton's nana. We found out that he has CF while my daughter was pregnant. Yes, all of our emotions were off the charts. After the initial shock we all started reading and educating ourselves on the disease. The best place that I found to do this was right here. There are wonderful people on here that are helpful and so supportive. Any question that you have can be answered right here.

As a Grandma I can tell you that the news that your grandchild has CF is just as devestating. The fact that my child is going through such misery and turmoil, broke my heart! Be there for her, we need to educate ourselves just as much as the parents. I've read where some moms will not trust anyone with their child because others don't have any idea what is involved in caring for a child with CF.
My daughter does not hesitate to call me if she needs me to watch the kids (lol not sure if that is a good thing). But to know that I can be trusted and can help her in this way is a great feeling. Also educating yourself can help you to also understand what your grandchild will be fighting for the rest of their life.

If at anytime you have any questiions or just want to talk this is the place. Also feel free to email me at bestnana1221@insightbb.com

Good luck to you and your family!

 

[Ratatosk]

Hi Addysgramie!

We were told by our doctor that CFers are born with regular lungs, it's just that with more infections and with time, lung function can decrease.

Our son was diagnosed shortly after he was born due to an intestinal blockage. My mother-in-law and a number of other friends and relatives learned how to do CPT (chest physiotherapy), learned how to give our son his enzymes and other medications, learned how to use the nebulizer. When one of us goes out of town, my MIL comes to help with CPT. It's nice to have another set of hands. When we first came home from the hospital, DS had lost so much weight that we had to set our alarm and get up at 2 in the morning for an extra feeding. We were exhausted. My parents came to visit and took over the late night feeding so we could get some sleep. Also I HATE asking for help. Sometimes it would be wonderful to come home from work and find that my house was cleaned -- at least the floors swept and scrubbed. My MIL has asked my husband from time to time if there's anything we need and he's suggested dusting or cleaning... We tend to let more things go now that DS has been diagnosed -- tending the flowers, putting away laundry...

One thing that drives me nuts is my own mom. She reads us on everything having to do with CF and tries telling me all about it. I would suggest doing your own research, but maybe not offer suggestions all the time or talk about articles you've read. Let them find their own way...

Also... ENJOY your grandchild! Look past the CF and just play! So many times I see my mother looking at DS with such sad eyes. I just want to yell, PLAY with him. Get down on the floor and play.