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Good Morning, My 11 yr old grandson has told us the same thing. I asked if he would like to reach out and he said he would. You can also find me on facebook: carol lynn tercyak barrentine or his mother Jennifer Sadosky. His name is Jaden Cambell he was dx in 2010.
How did it go? I would like to tell you that my grandson was negative for the first 32, it was not until they search further that they found he had three!
My Grandson has Delta F508 and C16796>A (R560K) and 1706A>G (Y569C) He is pancreatic insufficient, has chronic infections, hip dysplasia, etc. My daughter and I are still unclear what it means when you have 3!
Just a FYI, one of my fears for my grandson is that he will not find someone to love him when he gets older. That because of CF people may not want to bother. I pray that will not be the case as he is amazing.
When my grandson was first dx he had been in and out of hospitals for almost a year. The dr's kept saying he had asthma. It was not until he was ambulanced to Scottish Rite Children's Hospital here in ATL that a dr saw him and just knew he had CF. We were skeptical because my dtr was tested...
Hi Carol, Jaden and I saw that Connor was in the hospital and I asked Jaden to respond. Jaden did the strangest thing, he asked if I would do it. I have been thinking about this for a few days and I am thinking; just knowing he was in the hospital gave Jaden PTSD. I think in his young age he...
At Childrens Hospital in Atlanta it has always been that way for my grandson and he doesnt seem to mind at all. In fact if we forget when he is inpatient he knows where in the hallways to get one. I guess it is all to what you are use to but it is a good thing!
Hi Carol, I wanted to tell you that Jaden is over the moon about having a pen pal every day he comes home and the first words out of his mouth is Can I check to see if Connor wrote me? He is pretty much writing all of it himself with the help once in a while with spelling but he is so...
Hi my name is Carol Lynn (CL) and my grandon is 7 years old - as with your grandon, Jaden is very smart for his age too and I bet he would like a pen pal. His mother, him and his 5 yr old brother live with me so if your grandson would like to email he could send a Hi to...
Hi, My grandson has cultured x3, last time was around Memorial Day and was his first hospitalization in almost 5 years. He was there for 2 1/2 weeks - tune up's can last from 2-4 weeks, but if he is in the hospital - believe it to be a good thing as they are right where they need to be and will...
My 6 yr old grandson who has been in the hospital since 5/23 for a tune up is having a g-tube put in tomorrow. I was hoping for any positive feed back? Both my daughter and I are kinda freaking out even though this is probably best since he just won't gain weight!
My grandson has CF and its on FaceBook and anywhere else we can think of because we are very active in awareness. We have a team: Jaden's Juggernauts who walk yearly to help raise money for research. We get a lot of donations due to the fact that friends and family know Jaden and want to help...
My Grandson has had MRSA for the past 3 CF Clinic Visits and they are not doing anything special for it except watching and waiting? He tells me he feels great.
Wow this is awful! My Grandson has started Pre-K here in GA which is state funded. They not only give him his exzymes but actually taught him to hold the straw himself. You see, Jaden never liked apple sauce so we take the pill apart and hold the straw and spill 2 pills content in it and then...
My grandson and I had a heck of a time in ATL. Reason being when they placed the wand over it - it set off all kinds of bells and whistles. This was because of some med. residue. I was told to wipe the compressor down with rubbing alcohol, which I did and had no problem coming back.
Thanks to everyone who responded. We will be hiring a pool maintence company so hopefully it will be maintained well. We also have a hot tub (both at our house and my mothers) and we DO NOT let him in that. Using test strips before entry seems to me to be a good idea. We live in GA so we...
I have heard that CFers cannot go in Salt Water Pools. My grandson is 4 and my mother just purchased a home with a salt water pool. What are the risks as to why they cannot go in the pool? I know I read before on this site of people who were using Salt Water Pools just not Hot Tubs. Could...
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