|
|
 |
 |
Date of Birth: September 13, 2002
Place of Birth: Riverside, California
|
Sara Rose Greene is as bright as any
other child her age- yet her muscles do not work like a normal
persons, due to the disease Spinal Muscular Atrophy. Sara has
the most severe form of the disease which is type 1-Werdnig
Hoffman Disease. Due to her muscle weakness Sara is assisted
with breathing via a pressure ventilator and fed with a g-tube.
She has many other kinds of equipment we use to help her get
along with life the best we can. We hope to share some of our
ideas and equipment through pictures for other families w/ SMA.
Her big sister, Laura, is also a great help!
To live with SMA is quite a
challenge. Every time mom hears someone cough or sneeze another
grey hair pops out of her head. You see, most colds turn into
pneumonia for Sara. Pneumonia and atelectasis seem to come with
most colds and that is very scary, serious, and uncomfortable
for Sara. We sure do get to exercise our prayer skills a lot
with SMA around here- which is in southern California. Sara's
first pneumonia was when she was 7 months old. It put her into
the hospital for three months. When we came home Sara had a
trach and a vent. We just couldn't get her extubated to a
bi-pap correctly- long drama story. Since then, Sara has had
only one more pneumonia hospital stay- which was Thanksgiving
week of 2005.
We are at our third children's
hospital for pulmonary and ENT doc's. We started at Loma Linda
with the first pneumonia and transferred while Sara was
intubated to CHLA - Children's Hospital Los Angeles. We came
home from CHLA and did a bunch of follow up visit there until
mom had it with LA traffic! Now we see pulmonologist, Dr. Park,
at the San Diego Children's Hospital. He has a satellite office
in Murrietta 20 minutes from home- yeah!! Now we do a lot of
Zoo trips too. Loma Linda was the worst Children's Hospital.
They would close the door during rounds so parents could not
hear their discussion and they would make parents leave their
child for a full hour each morning and evening during RN shift
change. Totally unacceptable in my eyes when my child is in
intensive care!!!!!!!!!!! The other hospitals are not like
LLUMC.
Sara has done much traveling for a
little girl her age and a disability like hers. Sara has been
to Salt Lake City, Utah for clinical trial visits a few times.
On our road trips, Grandpa Ron drives the motor home while the
rest of the gang gets to hang out in the back. Salt Lake City
trips usually include some scenic side tours such as Bryce
Canyon. We even took off to Oregon for a Thanksgiving trip last
year. We have made it to Montana twice to see Uncle Buck and
Aunt Monica. Our last trip to Montana was with Dad's Road King
and Grandpa's ultra glide to attend the Harley Davidson Wild
West Rally. At the rally Sara got to see hundreds of bikers,
hear the roar of the bikes, meet some MDA kids, and enter
backstage for handicap parking while Credence Clearwater
Revival performed on stage. Sara has been to the LA Zoo, San
Diego Zoo, San Diego Wild Animal Park, Sea World, on carousal
rides at the mall, and many other places. This September we
have plans for Disneyland for Sara's 4th Birthday!
|
|
Walk N Roll to Benefit FSMA - Click Here for More Information! |
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
For Recent Pictures and Updates
Visit Us at
www.picasaweb.google.com/curesma1
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
 |
Supported by SMA Support.