Grandma's Reaching out!!

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BOOS GRANDMA

Guest
Hi my Grandson has CF he is 4 years old and right now doing great!! It has been a rough 4 years but he is the sunshine of my life!! I would like to find a way to find other Grandparents to talk to and share It can be heart breaking seeing my Daughter go through this.. she is so focused on taking care of her son!! Also to watch my Grandson go through all of the treatments just so hard because he is so little (U) Is there a group for Grandparents?
 
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JENNYC

New member
Can I just say that I LOVE LOVE LOVE you reaching out!! I am not a grandma but my mom supports me the way it sounds like you support your daughter!! And let me tell you....God has blessed me with my mom and I couldn't do it without her!!! I would put you in contact with my sweet momma but she is completely computer illiterate...but I think I'll keep her ;) I have a friend right now that just found out that her little boy has CRMS (which is CF unconfirmed) and her mother is fighting her on everything. So.... though I am not a Grandma... I want to say thank you for reaching out!!! I'm sure your daughter would be overwhelmed with joy as much as I am seeing this post!! I hope a grandma responds to you!! :)
 
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BOOS GRANDMA

Guest
Thank you!! I love hearing from parents too! I do not know how you all do it!! Boo is 4 and now he knows that he has CF. This has been recent all the whys... My daughter says all the time could not do this without you Mom .. But I could not do this without her!
We keep it light for Boo and try to make it fun. We have silly nicknames for all the stuff that goes with CF. Enymes are power pills! Nebulizer is NEB robot we made out of shoe box and foil :) and of course the shake vest!! I found a cute video about CF called Getting Nosey about CF with Ollie and Nosh. Boo had so many questions now.. Dr RED FRED his CF doc helps but the video is great and he giggle all the way through it and now talks about it all the time. My grandson Boo is awesome and I know each day I am blessed!
 
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JENNYC

New member
Our CF babies are blessings!! She teaches me so much!! And she too loves Ollie and Nosh!!! Our CF kids give us the courage to do it!! There are so many times that I would have completely fallen apart if it weren't for Abby being so strong. She kept me strong. I truly believe that God gave special needs kids a little something extra. These kids get put through the ringer and come out with the most beautiful big smile you ever saw! If that's not God at work I don't know what is. I love how you gave everything really "cool" names!! He sounds like he has one heck of a cheering section! We have told Abby everything about CF that she needs to know with the exception of the really negative things....I'm sure they will come up one day and I don't know how I will deal with that when it happens.....I'm kinda praying that we won't have to have that talk since we have all of these wonderful new medications coming out. It is truly an exciting time. And he is so young that I am sure he will benefit greatly from these new treatments!! I don't know if you've picked up on all the new treatments coming out but they are truly amazing! Abby has been pretty sick most of her life and normally has 2 hospital stays per year. There is a new med called Kalydeco that was FDA approved last year for all CF kids with a certain mutation of CF....for those kids it was there "cure" so to speak. As long as they took this pill twice a day it returned their bodies to functioning like they should! Well it was not suppose to work for Abby's mutation but we tried it anyway and we just celebrated 1 year with no hospital stays!!!! That is so big for us!! So I told you that to let you know that there is so much HOPE right now. The new drugs that are going to come out in 2015 so they are predicting is suppose to help a lot more CF patients and theres another med following that one that will help even more!! We just need to hang in there a little while longer. :) I truly have enjoyed talking with you and wish nothing but the best for your sweet family!!! Anytime you want to chat let me know. :)
 
R

Ratatosk

Administrator
Staff member
It's wonderful that you're there for your daughter. My inlaws moved closer to help out. Treat ds like a normal child, which he is.. Watch ds when we need sitter, take him to movies, on outings...

I have relatives that get all dramatic about ds and his cf, talk about it ad naseum, make a big deal about it, yet don't get to know him as the fabulous, fun child that he is..
 
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Aboveallislove

Super Moderator
dear grandma, welcome. i do hope some other grandmothers connect becuase while we mom s can say how much you mean to us and tell you how much you help, i'm sure it would help to have someone who understands the heartache you feel. i often think it must hurt my mom so much b/c she worries about her grandson, but that i am her daughter and she loves me as much as i love ds and it must break her heart knowing of my pain seeing my son suffer and worrying. finally, as others have said you must be such a help. unfortunately my parents are elderly--having had me late in life and me having ds late in life and are frankly more work than help and my father's had several strokes and my mom can't drive very well in good conditions and wqe live in a big urban area with horrible drivers. dh is same situation but with his mom dead and step mom older and i can't trust her health--some heart issues leave her collasping unconscience without a known reason. so we don't have that ehlp but know yours is so valuable
 
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LittleLab4CF

Super Moderator
Maybe the best thing you can do is to help normalize your daughter's frantic world. I think of the good things that came from my late CF diagnosis and parents not freaked out over me was one of the best. Early diagnosis of a disease that has no cure is sort of cruel and the damage done by knowing your newborn carries the potential of CF is of slim help to the family. Indeed I would have benefited so much from an early diagnosis in terms of nutrition but that was about it. Conventional albiet intense treatments for CF is all that is available with the exception of Kaly. This whole disaster needs to be cleared out of sight and mind. Manage CF about like you manage oral hygene. It is one more daily activity, yes it is a lot I know that, and it shouldn't be spectre. Celebrate your next generation!!!

LL
 
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pmotta

New member
Hi fellow Grandma!!! Oh I so relate to what you are going through. My grandson just turned 3 and it has been a rocky road but overall..i wouldn't trade it for the world. Throughout the process of acceptance and understanding what the diagnosis means (for all)...we have come together and formed a Team - Team CJ - all friends and family gathered together to help find a Cure! It honestly has changed my life and I am not sure what I would do without it. Even though I still work fulltime, I have also become a full-time fundraiser for the CF Foundation. I have met and maintained so many new friendships because of my grandson's diagnosis. Do I wish it never existed? You bet. I would love to chat with another gramma....feel free to private message me with a number to contact you...if for no other reason than to share the joy of what IS the best thing that has ever happened to me....the birth of my grandson CJ!!!!

We just actually opened up a new on-line store to continue our fundraising efforts - we sell handmade suncatchers and fan/light pulls and whatever else we can make to raise money! Check us out...
http://www.etsy.com/shop/CJsReflections?ref=si_shop

Enjoy that grandchild of yours...they grow up so quickly!

Peggy (gramma)
 
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BOOS GRANDMA

Guest
I love the website for CJ Reflections! Awesome! I will order and also make all my family order too :) Thank you
My name is Carol
 
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grammakaky

New member
I would love a Grandparents section. I'm a grandparent of 2 granddaughters ( ages 3 & 5). My daughter is a single mother and we are her main support team. It's hard at times; esp now, my oldest granddaughter is in the hospital with respiratory issues. It's the usual 2 week stay. Her grandpa and I are taking turns between hospital and helping take care of our 3 year old. My daughter had a good job and good benefits and can't afford to lose them. I agree, as grandparents too; it's also hard at times. We love them so much and can't imagine life without them. They are our blessing!
 
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BOOS GRANDMA

Guest
Thank you! I just ordered from CJ reflections love the hearts! Please anyone email me at anytime.. I just love being a Grandma our Boo has a rough month last month hospital stay, then last week second set of tubes for his ears. But he is a trooper just started a learn to ice skate/hockey class for 8 weeks! Funniest thing ever to see him try to skate, but he was so proud of himself for " scoring a goal" with his coaches help! I love the good moments even more now!!! It means so much for me to be here for my daughter and our Grandson! I think it does more for me.. I get all the Grandma hugs! Praying for you all!
 
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BOOS GRANDMA

Guest
I am not sure if you got my first response? I am here if you need to share It is very hard when kiddos in the hospital I look for new games on line all the online when Boo my grandson is in the hospital since he has to be on isolation and last time.. last month could not leave the room due to a funky infection. It did not help that he was scared of a ouchy ( needle stick ) the whole time :( but we found lots of games to play in bed and he was batman to keep away the bad guys.. of course my husband Papa was Robin! it is rough especially spending the night..but means so much to our grandkids that we are there and gives such a peace of mind to my daughter because she cannot always stay!! Let me know if I can help in any way!! Hang in there Grandma!
 
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