Update on Chandus
Chandus is 14 years old and is 4 ft. 9” tall
(144 cm) and weighs 70 pounds (31 kg.).
He did 5 years of growth hormone
injections and grew at a steady pace.
However, those were discontinued due to
high blood sugar, diabetes onset. He has
still continued to grow 2-3 inches and 1-2
pounds a year.
He does have special education classes
at his regular junior high school and does
well when he applies himself at school.
He studies close to his 8th grade level.
He is a kind, gentle natured young man
but does have sensitivities to change and
conflict. I do notice a temper on occasion.
He does have going to sleep issues—
always has. He stays up very late and
doesn't like mornings very well. I'm
curious if any other Floating Harbor child
has similar struggles. I would love to
have feedback!
Overall, things are going well. He
enjoys music, video games, hunting and
skateboarding and loves to watch Animal
Planet and the History Channel. We are
pleased to hear about a possible
convention! We would love to meet other
families!
Thanks, Julie Dilk
Dear Everyone;
I just thought that I would introduce
myself and my family. We are Pete
Williams III, Elaine Lyon, Pete Williams
IV & Natalie Williams. We live in Seattle,
Washington, USA. And I wonder how
much you would like to know about us all.
Pete III, 49, and will have his 30th
anniversary as a Seattle Fire Fighter May
of 2008. Elaine, 46, started back working
part-time two weeks before the beginning
of summer break this last summer. I do
not recommend starting back to working
out of the home right before summer
break. My week is Monday and Tuesday
at work until 3, Thursday I am at Natalie's
school, and Friday I am at Pete IV's school.
Pete IV, 12, was diagnosed with FHS July
of 2005. He is now in middle school,
which here starts at 6th grade. He is
loving being at the middle school. And we
are blessed with children that enjoy IV's
personality, both from his previous schools
and the children that he has met this year.
Natalie, 10, is doing okay with a special
needs sibling, but some times it gets to
be a bit much for a youngster. The part
that confounds me the most is that she
wanted to go to the doctor as much as IV
does. Natalie is in 5th grade and has not
gotten 5th grade itis yet. Natalie enjoys
meeting new friends and has some really
good long lasting friendships.
Today is the day of the Apple Cup! And it
is the 100th Anniversary of the Apple
Cup. This is the football game between
the two rival Washington Universities.
University of Washington and Washington
State University. The Dawgs against the
Cougs. The mascots are the U of W
Huskies and the WSU Cougars. IV is a
Coug! When and why he started loving
the Cougars? Good question. He has also
loved the Tampa Bay Buccaneers long
before they won the Super Bowl. And
when baseball is in season, we will be
inundated with the Seattle Mariners stats.
Back to today - so today is football. And
I need to get going so I can get food taken
care of so I can watch the game.
Happy Spring to everyone! Elaine
Rhett, 7 years old, Maine USA
Hello Everyone!
This is Rhett and his dog Luke. He will
be 8 in August. He is now 39 3/4” tall. (100
cm) He is still getting growth hormone shots
nightly. Starting to show anger issues
spoken of in the last newsletter. He is an
electronic whiz. He is now realizing that the
older classmates are picking on him,
because of his size. Rhett is a very bright
and loving young man!
More on Sleep problems,......
Julie brought this up, so I
thought I'd relate our experiences
as well. Jesse (14) has had
problems for awhile with this. FHS
children seem to have all this
energy when they are up and
going, and they seem to be able to
keep going, especially at the end of
the day when they've eaten well.
They seem to not be able to go to
sleep. Jesse will stay up talking, get
out of bed after an hour and come
and ask up what we are doing etc.
He seems to have endless energy at
night. BUT, once he falls asleep he
stays that way. He is usually in a
very heavy sleep all night long. I
can take off his glasses, pull the
covers up etc. without him waking
at all.
Then, especially if he
stayed up extra late he is in a bad
mood all morning and crashes on
the couch before lunch taking a
long 2 hour nap.
So, what can we do about this?
Here are a couple of things that
have worked for us:
1. Have a set routine and time
for going to bed. We are very
spontaneous and bedtimes
vary, but the routine doesn't.
We brush teeth, play a game,
and then read a book. Then
he goes to bed. No other
option.
2. We turn on a box fan for a
low background “hum”.
This seems also to block out
any noises of us talking etc.---
things that would interest him
and keep him awake.
3. We invoke a penalty for
getting out of bed or
continuing to talk after lights
out. This is usually a day
without his favorite obsession,
electronics. (You fill in the
blank for your FHS child. :-)
4. We also show him mercy and
give him attention when he
needs it. There are some
nights when his legs hurt,
there was something that
happened that day that
bothered him etc. Then we
take care of that (in bed with
the lights out), make sure he
knows we care and have done
something to help them,
THEN, it is bedtime.
I also would like to hear more
about this problem. If anyone else
has ideas or solutions please let us
know!
Deana Swanson
