change in behavior

February 14, 2004

I have noticed that there is a big difference and confusion

between the young chargers and the older chargers and I was

wondering how many experienced what we did.

when wesley was young he cared about everyone . when he was

in ICU for two months so they could watch his blue spells before

he got his trach he was just getting around in a walker ( as in

baby walker so he pushed himself not really walking.) If a baby

or child next to him cried he would go just as far as his O2

line would let him go grab a nurse or social worker and drag them

to the bed of the one crying. he wanted to make sure everyone was

taken care of.

everyone Loved wes he was full of hugs and helpful ness he

even rearranged the nurses desk for them and helped the janitor

with the floor.

when wes was latter weaned from full time nursing and got a

little older then he started fighting with his brothers a bit.

mostly reg. sibling stuff but he had never done that before.

when wes was seven and we had a third baby after him. and

around the same time wes was cut back on school care meaning he has

help when he is struggling but other wise they try and get him to do

things on his own . no more full time help at school. he decided

he really didn't like this baby at all and fights with him like

two little bobcats . we are always pulling those two apart it

seems. yet they look for each other to play because the middle

two are much more friend and sport oriented and leave those two in

the dust.

this year wesley being 10 has just started to um copy the

other kids at school but its like he is making up for lost time. he

does it all the time. for example I say wes where did you take

your hearing aid out at and he says " dont know dont care dont

like your underwear " the teacher is having a fit over this kind

of thing. I have two responses. one how did this kid get so

snotty all of a sudden and the other. ..... cool he is finally

saying something he learned at school all on his own no dragging

it out of him. I wonder if that would shock the teacher.

anyways the older he gets the more he seems to need to prove

that he can do things no matter what people say or think and he

tries everything you tell him not to . as if we dont tell the

other kids not to too. He is also into talking about everything

wrong with him. he wants to know why he had the trach. why he has

the tub in his tummy which he wants gone he said it makes him

fake. he wants to look like a real kid. we keep telling him he is

real he just has some med. problems but he doesn't like that at

all.

anyways I guess what I was wondering is the other kids

around same age or older. have you or did you notice these kinds

of changes with your charge kid. when you talk about how they

cared for everyone as a small child do you look at them now and

go was that the same kid? Or is this just something wesley

decided to put us through.?

KayRena mom of wesley 10 charge Jake 8 Tristen 6 Zachary

3 and KayLeigh 19 weeks in moms tummy

February 15, 2004

KayRena,

Our daughter is 19. Some similarites. In the hospital she was a " model

patient " even as a toddler, cooperative, tough as nails when it came to

treatments. She never was and still isn't a complainer. You had to read her

eyes for pain levels. We never had nursing care at home so I was it 24/7 as my

husband's job kept him away all day. She was and is very compassionate. Once

she got rid of the trach at 3 1/2 I think her brother( 5 years older) decided

" normal " sibling rivalry was the way it should be. They fought like cats and

dogs. I look back and it was pretty normal. Big brother felt pretty left out

through the first few years of one medical crisis after another. Normal for the

situation. Once was " normal " in his eyes, she was " fair game " .

When was in elementary school, about 4th to 6th. ( once her language

delay caught up with her age) the teachers would write or call that was

" too social " . She signed till she was 3 1/2 with her trach and spent hours in

speech theapy for years. This was music to my hears. Once I explained the whole

story they understood my mixed feelings. did learn when to keep quiet.

Inside I was rejoicing that she was " misbehaving " .

spent her youth nursing baby birds found on the gound, orphaned

kittens, abandoned baby rabbits etc. I had a cardbord box hospital in my

kitchen for years. Last summer at 19 she and her boyfriend found a baby bird and

nursed it till it died.

Once turned about 13 she became very independent. It was okay for us

because for so many years she was overly dependant on me. She began dealing more

and more with her own health issues, hearing aids, meds. etc. It took me a

while to get used to it. Her senior year in highschool she started making her

own doctors appointments and going alone. ( Big adjustment for me, but one I

must let happen) Now that she is a freshman in college she is totally

independent for almost everything. She also has a wonderful boyfriend to depend

on. It's been hard to let go but we must. When she is home she allows us to

spoil her rotten and we do with great pride and pleasure.

She's still deciding on a major. She loves her dancing but is seriously

considering nursing as a career. She played nurse as a kid to stuffed animals,

and anyone who would sit still. Both grandmothers were nurses so it wouldn't

suprise me.

Hope this gives you a little insite to one cHARGE kid. They are all

different.

Lynn

Ohio

Mom to Tom 24, 19 cHARGE, wife to Doug