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[Music]
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hmm
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[Music]
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oh
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one two three
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[Music]
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[Applause]
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[Music]
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um
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yeah i know let's go see mom
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do you want music i know you want your
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food you want your food
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[Music]
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everything is different everything's
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not the same as other people
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hey layton hi
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it's hard to look at those charts of
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this is where your baby should be at
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this age and this is where they should
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be
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at this age developmentally and
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still waiting for a word
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is your shirt wet too
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still waiting for an unassisted
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[Music]
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step
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you want to get you some more juice can
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i have that
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look at this
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that makes it a little better
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it'd be so invaluable to be able to put
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myself in their head for
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10 minutes and feel it and to know what
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it sounds like and what it you know what
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it looks like
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[Music]
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yeah just having a simple yes or no
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for communication would solve a lot of
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problems
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[Music]
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almost done
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i had this dream when we were starting a
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family
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thinking about what life is going to be
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like when this
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baby came into the world and the things
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that we would do together
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and if it was a girl that you know we'd
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shop together and we do crafts together
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like i did with my mom and
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if it was a boy they'd play sports
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outside and sorry
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hello hello oh we got hiccups now
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yeah pregnancy with colby went
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without hitch it was normal pregnancy
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developmentally she was
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right on track such a beautiful little
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girl yeah
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we had a lot of friends that had babies
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right around the same time we did
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and one of our friends like mentioned
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something to merrill like is everything
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okay with her she just seems to be
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lagging behind
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the whole time you're just kind of oh
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she's she'll come into it you know
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looking back at it now she was behind
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from day one she was behind i did have
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some difficulty
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breastfeeding her because of her low
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muscle tone even her tongue muscle was
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not doing what i'm supposed to be doing
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[Music]
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not that that was super abnormal at that
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time but it didn't get better
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hypotonia which is just lack of muscle
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tone
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there's fine motor delay there's gross
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motor delay
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i've heard dystonia before i'm not even
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sure what that is off the top of my head
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to be completely honest with you
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every day was something different
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different doctors we saw physical
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therapy occupational therapy speech
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a physiatrist i mean we saw doctors i
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didn't even know existed
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where are you going missy it wasn't just
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about
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taking a step anymore it very quickly
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became more than that
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i feel so good oh tape
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[Music]
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both kobe and leighton are undiagnosed
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they have no known syndrome
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or condition feet in
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all of the mris that have been done
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on colby and leighton have all come back
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normal the structure of the brain and
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the makeup of their brain
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looks normal on all scans
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bus is here babe i know
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[Music]
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up up and away see you later
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[Music]
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so
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[Music]
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good job
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[Music]
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this little quick video is about the
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muppets and the weather and at the end
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[Applause]
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uh
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nice
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boy
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excuse us
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all right nice reaching they are
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always seeking input because they don't
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know
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where their body is in space they're not
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standing they're not
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sitting down on their own someone's
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always helping them do that
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they're always trying to find something
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like layton
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some kind of interaction some kind of
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body contact that tactile
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input see
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stopped growing good job
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bubbles or book look at me
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[Music]
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goldie they've never really regressed
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with any of their symptoms it's just
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been a very slow
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progression push the button please
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oh you gotta try hold harder
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there it goes
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[Music]
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all the king's horses
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[Music]
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good job
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you're going so fast today
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good job
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blatant is currently working on using an
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eye gaze device
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he focuses on choices
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with his eyes he he will stare at the
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object
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that he really wants each cookie
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for each cracker
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yes cracker you picked cracker good job
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another cracker i think he's excited
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that he gets to communicate with us and
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he gets to
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make choices
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[Music]
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we're continually raising our children
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and doing
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things for them and when they start
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doing things on their own
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it's we feel so happy for them that they
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have that freedom and that independence
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he got really excited
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when we decided to have leighton
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colby had already been seeing a
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neurologist a geneticist
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and her regular pediatrician and
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the geneticist and neurologist could
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really just tell us there's
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like a 25 chance that this would happen
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again
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multiple people that we respected you
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know for their medical opinion
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said you know it's an anomaly
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put your head up thank you
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[Music]
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i'm done up here heather
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i specifically remember saying to her
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like if
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if this happens again you know i might
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lose my mind i might not forgive myself
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for that
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you know knowing that there is a
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possibility
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even just a 25 chance like you're
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you're gambling and you're gambling on
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it's a human to human life it's not like
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you're just playing cards
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good night i love you
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you seem tight i see you in the morning
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[Music]
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okay
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[Music]
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nice
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[Music]
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um
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[Music]
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hey
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[Music]
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have fun grabbing the bus
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[Music]
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i don't remember if i got a specific
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call on that but that's the thing any of
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those things we for sure address heath
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is
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the transportation supervisor for our
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school district here in olmsted falls
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he is at work a lot
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days are long you'll pull up and if
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sandy's behind you you can just radio
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her i'm a dedicated person i try to get
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my job done and do my job well
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and i sometimes struggle with that i
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have a job here to do too you know and i
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want to make sure that i'm not focusing
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more on
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my professional obligations and
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neglecting
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you know stuff that needs to be done
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here things that the kids need
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thanks thanks see ya i chose a
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profession that
00:14:54
really works well for how our family
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situation has turned out
00:15:00
nine beads three for each string you
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have three long strings
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find the end things that are difficult
00:15:07
for our kids to perform
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are not even probably thought about
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with the students that i teach and them
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not even realizing how lucky they are
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that
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they can do those things so easily table
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six would you return the marker tray
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that you brought over
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put that in the back counter please i'm
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waiting
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i don't know if our kids will ever even
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get to that point
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arms out a little bigger since the last
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time you've seen him just a little bit
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good job hold it hold it hold it
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stand up stand up come on steve you got
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a big smile on your face but you're not
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participating
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you're not gonna help me she's doing the
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same thing walking with
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you know a little assist from behind and
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then inner gate trainer
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but i think she's going up the curve as
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well does she see someone
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else she does we haven't really heard
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that one before
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right there it's a bit nice to see if
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she takes
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some weight there's a little gentle
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curve here yeah
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what would you do about something like
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that like just to make sure it doesn't
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get
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you know if you wanted to get anywhere
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we'll probably she probably needs at
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some point just a baseline x-ray to
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see what the degree is it looks mild at
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this point
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so we start to worry once the curve gets
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behind about 20 degrees
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and then depending on what the degree is
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what
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there are some funding options that
00:17:23
we could be presented with but because
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we don't have an actual diagnosis
00:17:27
they just have quote unquote symptoms
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and syndromes that
00:17:32
don't really qualify under anything
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so with the mutations that they both
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carry the one mutation has been seen in
00:17:39
children that have developmental
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problems microcephaly etc
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but for the disease to happen you have
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to have it on both sides
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they do have mutations of the same gene
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but they're in different
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points on the gene and so based on that
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it's really a little bit tough to know
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for sure
00:17:56
whether or not this is in fact what's
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responsible
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the fact that they both have it again
00:18:02
raises the suspicion a little bit
00:18:03
higher because just by random chance you
00:18:06
know for them both to get exactly the
00:18:08
same one would be unlikely
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i guess i'm reminded why it's
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we don't have to come here more than
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once every two years
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we're not just going to be lab rats i'm
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not going to live my life and make the
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kids spend their lives in hospitals and
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you know just our fun time isn't hanging
00:18:31
out and goofing around as a family we go
00:18:33
to the hospital for this or for that
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that was
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i'm sick of that i was done with it i
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don't want to deal with it anymore
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like if we could have one thing
00:18:52
communication would be it
00:18:55
for them to tell us like what's wrong
00:19:00
not just complain about it it's matter
00:19:03
corbs
00:19:07
got a bad song on
00:19:19
good job very nice
00:19:24
over all the way keep going keep going
00:19:27
keep going
00:19:29
that's the way and back again
00:19:32
push yeah
00:19:36
more
00:19:41
[Music]
00:19:50
you know how to do it put your head down
00:19:52
put your head down
00:19:53
down you got it
00:20:06
[Music]
00:20:12
want your music
00:20:22
[Music]
00:20:29
music with colby it's everything there
00:20:31
it's the most important thing
00:20:33
i would say that that she enjoys in her
00:20:35
life
00:20:37
she likes classical style stuff she
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doesn't like poppy
00:20:40
you know stuff that kids her age are
00:20:42
probably not listening to
00:20:44
it's hard too because i feel like
00:20:45
sometimes we
00:20:46
[Music]
00:20:47
don't even get to the answer of what's
00:20:49
really bothering her we just kind of
00:20:50
soothe her
00:20:51
with the music on her headphones and
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we've
00:20:55
kind of lost what she was looking for
00:21:06
one more thanks annabelle okay colby
00:21:10
you do it
00:21:21
all right i won't make you walk again
00:21:22
we'll just go back it's mind-blowing
00:21:25
sometimes being around
00:21:26
friends with their kids and seeing them
00:21:29
do things on their own
00:21:31
and what they can do their parents
00:21:33
enjoying
00:21:34
themselves and enjoying their kids being
00:21:37
independent
00:21:41
it's not necessarily being upset that we
00:21:44
don't get to do it it's
00:21:45
upset that the kids don't get to do it
00:21:46
and don't get the same enjoyment that
00:21:48
other kids do
00:21:52
[Music]
00:21:54
we're parents in the sense that
00:21:58
we created colby enlightened
00:22:08
but i don't always feel like i'm a
00:22:10
parent
00:22:12
i feel more like a caregiver
00:22:28
but i know they love us because they get
00:22:31
excited to see us
00:22:34
it would just be nice to get that
00:22:39
i love you
00:22:45
our kiss are a hug
00:22:49
[Music]
00:22:53
i couldn't do it without her
00:23:01
we're just a good team i guess you know
00:23:03
it works it's
00:23:04
frustrating sometimes too like uh i know
00:23:08
marielle doesn't like it when people say
00:23:09
oh you know
00:23:11
you guys were chosen it was you know you
00:23:13
were given this because you can handle
00:23:15
it it's like
00:23:17
it pisses you off you know
00:23:24
we like to think that anybody would do
00:23:25
the same that we do you know
00:23:27
i hope that's case but not
00:23:37
[Music]
00:23:58
it's going to come to a point where it's
00:23:59
not just us that are
00:24:01
physically moving them and helping with
00:24:04
them
00:24:05
that's probably always kind of a weight
00:24:08
on my shoulders
00:24:08
is what's that going to be like
00:24:14
press the button press it
00:24:18
press it
00:24:32
[Applause]
00:24:36
i don't see any blue shirts to you
00:24:37
[Applause]
00:24:38
[Music]
00:24:41
i think they're probably all over there
00:24:54
[Music]
00:24:57
nice job
00:25:04
let's do it
00:25:23
[Music]
00:25:25
good job
00:25:37
[Music]
00:25:40
[Applause]
00:25:41
[Music]
00:25:47
you going buddy
00:25:56
[Music]
00:25:58
[Applause]
00:25:59
[Music]
00:26:09
[Music]
00:26:18
[Music]
00:26:22
you
00:26:27
[Music]
00:26:36
uh
00:26:39
[Music]
00:26:50
um
00:26:58
[Music]
00:27:04
do
00:27:08
[Music]
00:27:32
oh
00:27:42
until we really find a diagnosis i feel
00:27:46
like i'm always going to have that
00:27:48
little glimmer of hope that
00:27:51
something will be discovered
00:27:53
[Music]
00:27:55
just to end that journey for that to be
00:27:57
over and
00:27:58
not have to worry about it because it's
00:28:00
always on the back of my mind
00:28:02
[Music]
00:29:11
you
