Sydney's trip to Pch was a success and thrillingly shorter than planned trip!
She wasn't the biggest fan of getting the probes glued to her head, but thanks to bubbles she made it. We played with bubbled all day long for 3 days straight it seems. We had the catchable bubbles so they were all over the room, bed, floor, monitors and Sydney. What ever works!!
The point of the visit was to find out if what we have been calling seizures for the last 4 years were
actually seizures. So she was hooked up to the
EEG and taken
off her seizure
meds and
monitored and videoed.
The
nurses and Dr.s were so
kind as always, it was nice being back on the 1st floor were we
knew many of the
nurses that walked in the door. It was
funny to see some faces when I'd turn around and they'd see my
belly. Many informed me they
treat little ones, they
don't deliver them. I kept
reassuring them that wasn't in my plans for the visit!
Neil came to visit the first night,
which Sydney
loved!It is crazy as a
mom to want a seizure, but by day two we were just waiting, and hoping. Sure enough the night of her second day she had one. It was a bit
tricky to get her out of, but it was an
accurate example of what her seizures did with length, body movement, breathing, and
saturation. She required oxygen and monitoring for a while after due to needing to sedate her, but after her one they were able to put her back on her
meds, not feeling the need to catch any more.
They were able to
officially diagnose them as
seizures. It is
good to
know we are treating the
correct thing and she isn't on
unnecessary medicines. She was
not a fan of having the probes taken
off, she was
royally ticked with the
teck until he let her play in the
water, then she was a little more
accommodating.
Summary of what we have learned: We are a bit
more confused. But we have more
facts to work with, they just aren't clear
yet. Kids with GA1 have two mutations in the
DNA, they only found one at this time making her a
carrier, but feel the technology isn't available yet and when it is they will find the second and that will
explain some of her symptoms. Most kids have this screening when they are a
newborn, but she doesn't show signs in the normal blood as other kiddos do. Kids with GA1
don't have seizures, they have more
cramping distonic episodes, like we saw last November/December. So finding the
seizures leads Dr.s to think there is
something else along with GA1 going on. That will be looked into at a latter date after all the
baby's test come back.
For now,
Sydney's diet has been
adjusted to
accommodate her seizures,
and GA1. She is doing
amazingly well with her growth and development right now, so we are
enjoying her
thoroughly and will readdress things later. We
love and appreciate all those that have been so
helpful with Carter and keeping our family in your
prayers!