[tri-med] Re: older triers/Joanna?

Thanks Chris, glad Jo is doing so well apart from her eyes. Hope you 
can get some answers soon to your care/respite situation.

At 01:49 PM 14/08/2007, you wrote:
>In a message dated 8/12/2007 2:36:22 AM Eastern Standard Time,
>jknowd@xxxxxxxxxx writes:
> > Chris,
> >
> > Can you give us an update on Joanna? I haven't heard anything about
> > how she's going for a long time.
> >
>
>Hi All,
>
>        It's that old no news is good news!  Joanna has remained 
> pretty stable
>(knocking on wood).  She is pretty much her usual smiling self, with enough
>gliches that I'm always concerned about something!  First, her eyes have been
>red, and we've had a sonagram as doctor couldn't see behind cataract still on
>left eye, no problem with the retina which might have detached so we're
>treating both eyes with Soothe drops 2x a day, and erythromycin eye 
>ointment 3 times
>a day, so they're improving somewhat, but vision doesn't seem 
>affected. May be
>increased nebulizing??  Penny, so glad Devon is doing better! -  will copy
>your email for Jo's doctor as he seems very interested in trisomy kids.  Jo's
>pulse/ox is                                                 usually 
>about 92-94
>on 1 12/ liters - she had been a 1 liter for a long time, but needs 
>that extra
>now, am trying to give her more bipap time, but with all the
>medicines/treatments we   run out of time. Next we're getting some 
>vocals with her BM's- VERY
>unusual for Jo - and gas releases from feedomg tube sometimes when opened -
>thinking from list discussions perhaps fundo problems? It's been 4 
>years since
>placement now, she's due to see gastro at end of this month and I'll bring it
>up then.  Other than that biggest concern is care - still no nurse - have to
>hit up casemanager again - Jo has to have LPN because of feeding tube - none
>available at any agency, privates either not interested or already booked.
>Hospitals/nursing homes just paying more that Medicaid I guess.  We 
>do have someone
>interested and has just gotten her paperwork approved, but haven't worked out
>schedules - she has taken care of Jo a few times with us paying so we have
>hope.  Boni is retired and does't drive and I work until 2, so we 
>have 2 hours
>until  Jo comes in at 4 o'clock to get any and all errands, shopping,
>appointments etc. finished.
>
>        We've also had a pretty full summer.  Boni's dad celebrated his 98th
>birthday in June and family threw a bash - hired a bus to travel entire group
>of about 30 folks around Long Island, then had a catered BBQ in backyard -
>great party - Jo and I only made it to BBQ tho.  Then my 3 sisters 
>and a niece
>from NY, WV and SC came in for a week - they come to me as I can't 
>go to them- we
>had a GREAT Time - going into the city to the Met, shopping in every
>bookstore, thrift store, clothing store we hit.  Then into Harry 
>Potter frenzy as new
>book hit the day before last sister and niece would leave.  We were at Target
>at 8am when it opened and got 2 copies - one for each of them to read on
>return plane ride, my copy came from Amazon by 9am.  My 
>niece/god-daughter,14, is
>starting high-school/college (Univ of SC) - 1/2 day each, in a great program
>which will give her 2 full years of college at the end of 4 high 
>school years.
>My daughter Mary, the social worker, has turned HUGE NASCAR fan, so her
>husband got them tickets to the race yesterday at Watkins Glen for 
>Christmas last
>year.  She called to say it was incredible - even if Jeff Gordon didn't win!
>Details will follow after they've spend 2 days in Vermont checking 
>out Ben and
>Jerry's. - Now that's a vacation!
>
>Our love to all,
>
>Chris H., Mom to Joanna T-18, 32 years
>
>
>**************************************
>
>Get a sneak peek of the all-new AOL at
>http://discover.aol.com/memed/aolcom30tour
>
>
>                   Building ___ooOOoo__ Rainbows
>                        www.trisomyonline.org
>                   Families Helping Families On-line
>
>
>
>
>--
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>15/08/2007 4:55 PM

Jocelyn, Wife to Frank, Mother to Ian, Gillian & Susan. Maker of 
quilts, singer of songs,
Nanna to Carly 20, Mathew 18, Ashleigh 17, Alex 15, and Tess 10 years 
old with T18.
also step Nanna to Carrie age 19. & Great Grandmother to Eli, Jonas & Escha.
Living in NSW, Australia 

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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