Re: Re: Consumption, TB, Asthma, Pneumonia Etc. Etc.

[Guest guest]

Yah...Triana bites sometimes, but generally not during CPT. I told her that if

she bites me, I'll bite her back. (I don't actually bite her back, but just

telling her that makes her stop trying to bite...she knows it hurts me when she

does it.) I was holding her in my lap last night while I played a game with

some friends, and she just up and bit me on my breast for no reason. I was not

amused. Set her down in the chair next to me and wouldn't pick her back up for

the rest of the evening. That made her extremely mad and unhappy, but hey,

she'll remember that next time.

We take care of her kicking by holding her legs down if she kicks us. That

makes her very mad. You only have to hold them still for 30 seconds or so until

she gets the hint and stops trying to kick. She hates being restrained in any

way, which is why I think she hates therapy so much...all that staying in one

place, and having to be in specific positions far longer than she'd prefer. The

actual bopping part doesn't seem to be a problem (except when we accidentally

get her hair in the way). It's the positioning that gets her upset.

We actually don't have a family history of kids or adults dying from any of

those types of things on either side of the family. My grandfather had a set of

twin siblings that died shortly after birth because their spines were not

covered, and a 7-year-old brother that died from some contagious disease (forget

what, but not lung-related) The other 10 of his siblings died of old age or

cancer. Grandpa died of complications from hepatitis (gotten from a blood

transfusion from before they checked for that stuff). My grandma's sister died

of lung cancer and her brother is still living (as is my grandma). On the other

side, my grandparents' siblings all lived to adulthood with my grandpa's

half-sibs all living, and my grandma's sister died of old age (complicated by

Alzheimer's) and her brother is still living. My mom's sister died at birth

because of the cord, and her brother is still living. Dad was an only child.

I don't know anything before my grandparents' generation; I have genealogical

info, but no idea what most of them died from. I'm guessing our families have

just lucked out for a few generations and not married carriers...I just drew the

CF straw. Oh well...

Hope you guys have better luck with the CPT...have you guys looked into getting

the vest yet? I'm just holding on till it gets here...

Shanna

mom of Triana, age 2 wcf

Re: Consumption, TB, Asthma, Pneumonia Etc. Etc.

All those years ago when children died young and no one had ever heard of CF

it wa always put down to either pneumonia or Consumption (which is I think

another name for TB). My Father-in-law remembers a younger brother dying when

he was about 7 years old of " TB " which we have decided was probably CF. SO

being 7 years old 70 years ago was pretty good going for CF. Usually died within

first year or two.

Shanna - your story about Triana and her Physio sounds very familiar with

Shelby who was 2 on 16th November. But she tops it off with biting and kicking

her mother - who has the bruises and bite marks to prove it.

Her psycologist said she was too young to react this way but we are trying to

get the psycologist to actually come to the house and watch her as its getting

physically impossible for her mother to do the CPT at all. Shelby will allow

our Home Care to do it and also most of the time me. Although even with me she

will struggle and wriggle about. We have taken to trying to get her to bounce

on a mini trampoline instead and then try to blow us all over!

Love Grandma Maggs