Kate’s Great Life (Pfeiffer Syndrome)

Kate’s Great Life (Pfeiffer Syndrome)


okay iPad no not that way can you
say can you say I love you dad is she the boss of the house oh
definitely you have a book I would love to read the book with you would you like
me to read it yeah No thank you for telling me that I don’t
always want to read books either sometimes it’s better just to play with
swords do you want to read books yeah do you want to play toys okay it’s nice
to meet you hi I love you I love you more than I ever and love you the most
you can mama hide oh thank you welcome to SBS K we believe that
everybody has a story that’s worthy of being heard when we listen to one
another the world becomes a closer place and we all benefit together so without
hesitation let’s meet today’s friend when somebody meets Kate for the first
time what do you hope they think um I know they’re gonna see that she’s
different that’s obvious but I hope they would think she’s cute and I think she
is we actually think she looks pretty cute Madeline I love the way she looks
and she’s got these incredible cheeks ha she’s got very kissable cheeks and her
hair that is finally coming in it’s been about five years six years that she
didn’t have hair at all and now her hair is finally growing David watch her and
see the cute things that she does and me think that they’d like to get to know
where come over and say hi are you showing everyone your sticker I like
that that’s a great place for your sticker well you know what if you’re
gonna have a cool sticker for your head I need to have a cool sticker for my
head I guess I just want them to see you’re the way I fear I don’t know she’s
she’s beautiful to me and she’s smart and funny and maybe just give her the
chance and the time that you need to get to know her she can’t change the way she
looks she was born that way she came into this world that way but what we can
do is we can look at her different differently who do you like more sleepy
or dopey you be you like sleepy the best I see your favorite
echo what do you and Kate talk about when no one else is around
we tell stories we she really likes this show called super monsters and so we
make up stories with the characters in the show I think she has a crush on one
of the boys in the show named Frankie do you like Frankie Greggy
was there any fear when Kate was first diagnosed yes a lot I’d never heard of
it before I don’t you know how to spell it I still don’t know if I know but yeah
we didn’t really know what Pfeiffer syndrome was or you know what it
entailed for Kate we still don’t know kind of like they don’t tell you like a
life expectancy or anything like that they don’t there wasn’t a ton of cases
there’s not a lot of information yeah I remember going in and seeing Kate for
the first time in the NICU and she was hooked up to monitors and machines and
cords on every limb of her body and her head was wrapped and I remember as her
father feeling pretty scared and worried for her future
at that moment Kate as I was I was kind of just stroking the back of her hand
she reached up and she latched on to my finger really really tight and in that
moment I knew that she yeah I’m sorry I knew that she would be okay and she’d
be a fighter her life is different but it still has all the same important
aspects she still has joy she still feels pain Oh
cuckoo noise she’s sayin ready do you two talk a lot yeah we do sometimes we
don’t know he’s understand you say it but she knows what she wants to say
oftentimes Kate wants something and she clearly knows what she wants but we
don’t know what it is that she wants and it’s sometimes throw a little bit of a
tantrum to try to help us understand but you know verbally she’s not very grating
that communication and so sometimes it takes us a while I just do you want this
or do you want this or trying to find that right thing that she does want what
do you want to do do you want a sticker yes she’s thinking about it what do you
want to do do you want to give mom a kiss oh please oh thanks how do you know
whether to prompter more or give her time to think oh thank you um I guess
it’s hard to know sometimes you can tell she’s thinking like if she just stops
for a minute but other times you can tell she’s getting distracted it’s just
time I’ve kind of learned do people underestimate Kate yeah absolutely she
is actually extremely smart she knows she can count to a hundred
she knows all her letters all her colors good job know good job no you are so
smart good job no we discovered that she started pointing out things and acted
like she knew what they were and so we started challenging her and trying
different things and quizzing her I guess and she just like took to it like
took to learning her numbers and her letters yay
that is the letter J what letter is this one day I left there when we were
playing with those little blocks with the letters and she spelled her name by
herself good job what animal is that is that a
fake yeah that is a rabbit he gets really excited and she’s proud of the
things that she knows it’s fun you’re so smart my friend I’m proud of
you and I’m happy you’re teaching me all about these letters
what is fiber syndrome five-four syndrome is a syndrome that
affects the bones in your body she also has other things that are outside of
Pfeiffer syndrome that she was born with different chromosomal defects but
Pfeiffer syndrome affects the bones in your body so when when babies are born
their sutures in their head are usually open and Kate’s were fused and so when
she was born she came out with a very kind of clover strawberry shaped head
been different than I thought it would be for sure when I thought about being a
mom it’s been night and day different than that but it’s been better than I
thought it would be it’s been really good can’t imagine life without her huh
see if you follow we found out three days before she was born that she had
something wrong with her we actually Madeline’s whole pregnancy we thought
everything was fine and then three days before we found out that Kate had a
little bit more amniotic fluid than normal and they noticed her skull was a
little bit different and so we had a special ultrasound and they confirmed
that that was true and there was some other things that they were worried
about and then three days later it kind of rushed she came she was 33 weeks so
she was seven weeks early shows huge she was just little do you mind sharing some
of the ways in which it has been different than your expectations yeah
and for example babies can’t have these milestones and my second child is
healthy or typical and so I’ve been able to see the difference and each thing
took longer it took a lot more work it was harder for her she was doing I’m she
had a lot of surgeries especially the first couple years of life and so when
you spend your life in the hospital you can’t you’re not spending it learning
how to do things why is it important for a Kate and people with the similar
diagnosis to be represented in video and media
I think people see your and their the kids will say where it’s like scary and
weird and it’s because they haven’t seen it before and they’re not exposed to
people with differences and I think the more I’m okay sharing Kate because then
when somebody sees her they’ve already seen her before or they or when somebody
sees another kid with a similar disability they’ve seen Kate and they
know about it I guess because I guess the unknown is what’s scary or what’s
weird but when you get to know Kate she’s just like any other five-year-old
girl oh that’s sweet you’re making the prince and the princess dance thanks for
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