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

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


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