One of the questions I get most often as Emily's mom is: Is Emily able to attend school?
The quick answer is, yes. The more important detailed answer is yes,
on a modified schedule. Emily did NOT attend preschool due to #SIOD.
She attended only her 1st day of Kindergarten due to SIOD.
She was taught at home and in the hospital for several years
after and on extended hospital stays due to her SIOD.
This is part of living with a rare genetic life limiting disease
or any chronic kind of illness. Emily only attends school 3 days
a week for 3-4 hours on those days. This seems to be her best
quality of life school zone. Gretna Public Schools has been amazing through it all! 🙌
She takes many medications that we give before she goes, she requires more sleep,
more cognitive rest and has doc and therapy appointments mostly
on the other 2 days. Not to mention risks of infection! Is this schedule
for ALL SIOD kiddos? No. Honestly many of the SIOD children either
don't live long enough or aren't old enough yet. Another reason why
your donations matter. Another reason we must keep raising funding
to help prolong these children's lives so they too may attend school in
whatever way that looks for them and their medical necessities.
We managed to sneak in quite a bit of last minute summer fun this past week
before school begins for us on Thursday. Our friends, Neely and her human
Shannon came by during Emily's IVIG infusion to help distract and comfort.
We played at a friends pool, got back to school hair do's, went to the doctors
and therapies and enjoyed some time at the Children's Museum.
We hope our readers have enjoyed their summer as much if not more
than we have and remember to stay safe, have fun and wash those hands!
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