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Keeping Our Promise: A parent’s view on congenital hyperinsulinism care at Cook Children’s

September 21, 2019


(soft music) – River was born in Kyle,
Texas in a little hospital. Because he was born early,
they did a blood sugar check. it was a nine, which normal
blood sugar should be from 70-100. They finally got to the point
where they said, we’re not sure what’s going on. We’ve never seen anything like this. We’re gonna have to take you to a higher level NICU. We did genetic testing
while we there, and when it came back we found he has
congenital hyperinsulinism. We found out about Dr.
Thornton because he wrote probably half of the articles
on hyperinsulinism, and I said you know what, we need
to just start traveling to Fort Worth to go see Dr. Thornton because he’s the expert on hyperinsulinism. We were just overjoyed
whenever we met them and felt so at ease and knew
that we had made the right decision to see Dr. Thorton. You can tell that he
really, truly cares about all of his patients,
and the staff has always been so helpful. His nurse Lisa is always
there when we need her. Whenever we first came to
see Dr. Thornton, he could only fast for about an hour
and half, and he was getting shots three times a day. – Amber Ross, the mom of
River, she’s an incredible nurse and an incredible parent,
and yet she’s not a nurse. She’s become a nurse for River, to be able to do all the medical
things that need to be done. – Every 3 months we’ll
do an in office visit, and then twice a year
we do a hospital stay. River actually looks forward to it. The nurses always give him
so much attention and the child life specialist will
come into our room and do activities with him. He loves to go get yogurt
while we’re here, and the Build-A-Bear Workshop. The rooms are comfortable. There’s a place for us to
sleep so that we can stay with River, and what also is really
helpful, is that they’ll do the fasting studies around
the same time, so it’s nice because we get to meet
other parents while we’re at the hospital. River gets to meet other
kids that are going through what we’re going through. River is now five years old. He is doing so well because of the newest research, we found out
about a shot that he can take just once a month. We’re open to trying new
drugs and new research. I mean if it can do anything
to better our son’s life. – When you come to a place like
Cook Children’s, where we’re at the forefront of diagnosis
and treatment, there are options that we can do
that other people can’t do. With this new drug, River
was able to go much longer during the day without having to eat. He required hardly any
chemicals during the night. He was able to run around and
do all the things that all the other children are doing. Little advances make huge
differences in the lives of children. Looking at a kid like River
Ross having so much fun, and thinking where he was three
years ago, that helps me say I need to write another paper. I need to write another research
grant and let’s keep this moving forward. The HI Center here at Cook
Children’s is really a saving grace for us. It’s worth the drive for us
to be able to come here and know that we have an
expert in this disease, and a team that’s around
them that will help to make sure that river receives the
best care now and of course moving forward in the future. (playful music)

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