[tri-med] Murphy's Laws Ugggg

Hi All,
 
Oi Vay am I way behind in emails.... howdy to all the new folks, seen a few 
names pop up. 
 
Quick update on Genevieve:
 
Jan 12 Sleep study, never want to experience that again.... But got results 
yesterday, several episodes of sleep apnea, lowered levels of oxygen during 
episodes, snoring massive and they suggest her getting tonsils out so got an 
appt for early March for consult.
 
Started periactin after sleep study and "Yahoo" she's putting the weight on, 
she gained 6 oz in 2 weeks : ) eats so good now at meals, hope it continues, 
will try it for 3-4 months.
Starting to sleep a bit better at night, up only twice now, although freak 
T-storm other night woke her (Indiana, winter, snow, now "Thunderstorms", 
someone upstairs has wicked sense of humor) 
 
The only meds we have her on now is periactin, VitB6 for seizure control/weight 
gain, flonase as prn as well as Diastat prn.
 
She had 18 month checkup Tuesday and got a clean bill of health.... Knock on 
wood...
 
One year First Step meeting today to get hippotherapy and listening therapy 
started to address SID issues and another year to plan on goals. Then Genevieve 
puts her head down on her therapist shoe, we thought she was playing till I 
heard that dreaded sound.
Seizure didn't last more than a minute, but have a call into neuro and will see 
if anti-convulsant be avoided with the weight issue at hand. She's been off 
Tegretol for almost a month, and seizure free for 5 months and few days. But 
you gotta play the hand your dealt....
 
One step forward, two back.... and it's snowing again, must mean hmmmm a 
tornado upcoming??? LOL Only in Indiana....
 
Will try catching up on emails tonight..... Hugs to All!!
Take Care,
 
Pamela 
mom to Savannah 15(going on 21), Faith 5 yrs old(going on 20) & 
Genevieve 18 months old(playing in ball pit) Partial Trisomy 5q 
(46,XX, dup inv ins 5(q31.3;q35.1q34), missed amnio)
 


---------------------------------
Do you Yahoo!?
Yahoo! SiteBuilder - Free web site building tool. Try it!

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

Other related posts: