Re: Good news for a change

[Guest guest]

Hi ,Congratulations to you and Libby !How wonderful !I am very happy for you both, when she is ready to make a film, let me know, Billis looking to act !LeeHi everyone, I have been a loyal lurker for several years, ever since my now 22 year old daughter Libby was diagnosed with psc in 2003. This site has been such a great source of comfort for our family and I want to thank everyone. We've had our share of difficult moments these past 4 years but I just wanted to share a good piece of news. Next week we will drive up to Santa Barbara to see Libby graduate from UC Santa Barbara. 

[Guest guest]

Will do, Lee! Libby can make it an " all PSC production!! "

> Hi ,

> Congratulations to you and Libby !

> How wonderful !

> I am very happy for you both, when she is ready to make a film, let

> me know, Bill

> is looking to act !

> Lee

>

>

[Guest guest]

Hi ,

I just needed to post after reading your mail. A big CONGRATS to

Libby and so glad you posted what you did. My son who was diagnosed

two years ago lives at home and commutes to college. He attends the

University of Florida (Gainesville- GO GATORS) and will start his

junior year in the fall. He wants to move out and I always try to

keep him at home because I worry about him not eating well even though

I will still be in the same town. My husband moved recently to work

in Kenya and I decided that I wasn't going to move also because I feel

it is one thing to live in another state from my son but for both of

us to move thousands of miles away in kenya wasn't sound. My son is

doing well now and I liked reading your mail because it gave me the

encouragement that it should be OK for him not to live at home and

that he will be OK. I worry too much I know.

Rita

[Guest guest]

Hi Rita,

Oh, thanks so much for your kind words. And, yeah, go Gators!!! Your

son will be fine. Pack that boy's bags and let him to enjoy his last

two years of school!! Libby was very up front with her roommates and

they wound up being her best advocates. When Libby would go to parties

as a freshman, someone would come up with a drink and her roommates got

so good at just saying leave the gal alone she's with me and she

doesn't want your warm plastic cup of beer. Shu-shu. Of course, as a

senior, she has developed a wonderful circle of friends...big anonymous

parties are a long-gone thing of the past so there is no more worries

about looking " cool. " She has even converted her boyfriend (who is a

6'4 " big hulking athlete who loves his MEAT)to dinners of tofu stirfry.

One piece of advice?? Make a phone call yourself to the school's health

services department and introduce yourself and explain your son's psc

condition. I did that with LIbby and she was given the name of one of

the doctors on staff to always ask for. This guy was great. The first

time she came in (freshman year, she got something, mono...strep that

lasted about 6 weeks....we still don't know what it was), that doctor

showed her his file on her. He had downloaded a pile of info on PSC and

had red flagged it in her file. I can count the times that Dr. Cook

wasn't available to see LIbby over the past four years but when he

wasn't, Libby felt good about not having to re-explain her condition to

a new doctor every time she came in because an explanation was in her

file. We will clue in the health services at USC when she starts there

in the fall, too. And lucky for us, she will be closer to us at only 2

hours away. We gotta start letting them take care of themselves. IT

will only get harder the older they get. Better to start now, right?

Have a great weekend...and again, GO GATORS!!

Proud mom of LIbby, psc/03

> Hi ,

> I just needed to post after reading your mail. A big CONGRATS to

> Libby and so glad you posted what you did. My son who was diagnosed

> two years ago lives at home and commutes to college. He attends the

> University of Florida (Gainesville- GO GATORS) >

[Guest guest]

Hi Rita,

Oh, thanks so much for your kind words. And, yeah, go Gators!!! Your

son will be fine. Pack that boy's bags and let him to enjoy his last

two years of school!! Libby was very up front with her roommates and

they wound up being her best advocates. When Libby would go to parties

as a freshman, someone would come up with a drink and her roommates got

so good at just saying leave the gal alone she's with me and she

doesn't want your warm plastic cup of beer. Shu-shu. Of course, as a

senior, she has developed a wonderful circle of friends...big anonymous

parties are a long-gone thing of the past so there is no more worries

about looking " cool. " She has even converted her boyfriend (who is a

6'4 " big hulking athlete who loves his MEAT)to dinners of tofu stirfry.

One piece of advice?? Make a phone call yourself to the school's health

services department and introduce yourself and explain your son's psc

condition. I did that with LIbby and she was given the name of one of

the doctors on staff to always ask for. This guy was great. The first

time she came in (freshman year, she got something, mono...strep that

lasted about 6 weeks....we still don't know what it was), that doctor

showed her his file on her. He had downloaded a pile of info on PSC and

had red flagged it in her file. I can count the times that Dr. Cook

wasn't available to see LIbby over the past four years but when he

wasn't, Libby felt good about not having to re-explain her condition to

a new doctor every time she came in because an explanation was in her

file. We will clue in the health services at USC when she starts there

in the fall, too. And lucky for us, she will be closer to us at only 2

hours away. We gotta start letting them take care of themselves. IT

will only get harder the older they get. Better to start now, right?

Have a great weekend...and again, GO GATORS!!

Proud mom of LIbby, psc/03

> Hi ,

> I just needed to post after reading your mail. A big CONGRATS to

> Libby and so glad you posted what you did. My son who was diagnosed

> two years ago lives at home and commutes to college. He attends the

> University of Florida (Gainesville- GO GATORS) >

[Guest guest]

>

> Hi everyone,

> I have been a loyal lurker for several years, ever since my now 22

> year old daughter Libby was diagnosed with psc in 2003. This site

has

> been such a great source of comfort for our family and I want to

> thank everyone. We've had our share of difficult moments these past

4

> years but I just wanted to share a good piece of news. Next week

we

> will drive up to Santa Barbara to see Libby graduate from UC Santa

> Barbara. So, for parents of soon to be college students, I want you

> to know that you can send your kids away to school and have them

not

> only make it but thrive. Yes, there were many times I wanted to

drop

> everything and drive the four hours up there to take care of her

> during the latest bout of whatever. But, I didn't. And, guess what?

> She did fine. She learned to make friends with the best doctor in

the

> health services (and get his private email!), educate roommates

about

> her " dry " drinking habits, and only fall in love with guys who like

> to eat tofu stir fry. She discovered there are a lot of college

> students who don't drink, that when you take a morning run through

> the campus at 8 am on a Saturday you get the whole campus to

> yourself, that college profs at a huge university can be very

> sympathetic to health woes, and that you can get through four years

> of fatigue, stomach problems, and a gazillion bouts of strep

throat,

> migraines, and oh, those allergies, and wind up with a 3.95 GPA in

> your major and succeed as editor in chief of the school yearbook.

> Best news? She was just accepted by USC to pursue a MFA in film

> production this fall. What makes me happiest about all this? (apart

> from the obvious, that she is living out her dream?)Well, she gets

> great health insurance for another two years. Yahoo! We don't know

> how long with will all last. But, we are taking it a day at a time

> and are very grateful for the good days and accept the not-so-good

as

> just part of life. And I was just having a good day and needed

> to " share. "

> Okay, back to work,

> Wells

> Very proud and happy mom of Libby, PSC /03

>

Hi and congratulations to Libby!!

Thank you for taking the time to post - it has been very helpful to

me as a Mum to Dan [18 UC/PSC since 03]who will leave for university

this fall. We live in Belgium and Dan will go back to the UK for Art

college - as yet we are not 100% sure where. I am very anxious for

him but I know I have to let go and trust him to know his own

strengths and weaknesses..and remember to take his MEDS!!!I do not

like the UK health system [i am British and worked in it as a

nurse/midwife for many years]and do not trust it at all but we will

be able to bring him home here for some remicade infusions and in the

case of any problems. Dan has a dream and I know he must be allowed

to live it if at all possible. But I was encouraged by your

post..thank you!!

Brussels

Dan UC/PSC 03