Reflections
on the Calgary conference by Laraine - return
to Pat Porter's report
We
returned home last week from our conference in Calgary, Alberta. It
was so nice to meet everyone involved. We had some wonderful speakers
who volunteered their time to speak to us. On the Sunday night we had
Wendy from the University of British Columbia speak about her research.
Most of
her research is about other Mosaic conditions but she was very informative.
I personally was very fascinated with her research even though
I though initially I thought it might be a little boring because I knew
it all. I was so wrong! I certainly had no idea on so many aspects of
MDS or the other Mosaic conditions. Wendy explained to us that 40% of
all of us have mosaic cells in our bodies when we are forming in the
womb. They usually correct themselves or the baby aborts by themselves.
Usually when the first cell starts out as trisomy 21 it will stay that
way though sometimes it corrects itself too and becomes "normal."
But "normal" is not a good term because mosaicism is a normal
event. Also she went into that blood is not a good indication of the
cells and that skin should always be tested. An
individual with mosaicism could also take on more "good" cells
and the count can be completely different in years down the road in
the blood sample. This is why skin testing is so important. Wendy explained
if CariAnn had testing done today with her blood that it might not show
any mosaic cells.
Thank you Wendy for sharing your information. If anyone has questions
of Wendy she would be available at HYPERLINK "mailto:wprobins@interchange.ubc.ca"wprobins@interchange.ubc.ca.
Wendy was hoping we could help her find her next research topic. CariAnn
wanted to know if there was a gender difference between the sexes on
the development of children with mosaicism. Does anyone think there
is more of a difference between the boys and girls? I think it is just
the girls develop a little faster earlier on.
I
thought Wendy's talk was fascinating and certainly the pizza's and Danny
and Bob's birthday cake were wonderful too. As always the most wonderful
thing about any conference is meeting the other families. Thank you
to Bob, Danny, Noah and Stephanie, Nancy, Keith, Susan, Alex, Keith's
grandparents, Laura, Aubrey and their aunt and uncle, Randy, Diane,
Kyla, CariAnn, Kyle,
Des, Dave, Chris, Matthew, Pat and Nana, Lin, Ryan, Carol and Donna
for making our event a success. It was so wonderful to meet all of you!
On
the Monday the whole gang went to Heritage Park in Calgary. Heritage
Park is a recreated old village with the employees dressing in the turn
of the century clothing. Most of the buildings are original from around
the province. There are people inside each building who will tell you
about
what it was like back in the early 1900's. It was easy to get to and
with a little car-pooling we all made it there in one trip. Many thanks
to Bob and Daniel who came to our hotel to help with this endeavor.
We toured Heritage Park in the morning and then at noon it was time
for lunch. We feasted on a soup and sandwich buffet which consisted
of salads and deserts. It was way more than I expected and I hope everyone
enjoyed it. Donna Heerensperger came from the Calgary Children's Hospital
to speak to us about medical issues. Donna is in charge of the Down
syndrome clinic there. Donna said that we should be looking out for
thyroid problems, feet problems and especially sleep apnea. Sleep Apnea
is prevalent in 85% of all DS individuals. It can hamper learning, sleep
and cause major health problems. If your child is sleeps doubled over
this is a huge sign of sleep apnea. Sleeping with their necks extended
backwards is also a sign. She recommended that our children be tested
yearly for this disorder since the cure is so helpful and causes such
great side effects. Even if your child is not exhibiting these big signs
it still might be an issue.
In
the evening we were very fortunate to have the Shiners donate their
facility at the river for us to use. It is a huge grassed area complete
with a clubhouse and the best BBQ I have ever seen. We cooked up steaks,
hamburgers, and hotdogs with potatoes and salads. If anyone left hungry
it certainly wasn't due to lack of food. We played Frisbee and had a
great visits with everyone.
On
Tuesday we rented a 28 passenger bus and went out to William Watson
lodge in the Kananaskis country. The mountains are spectacular at this
time of year and flowers are very plentiful. We had lunch out on the
deck of the lodge. Dave, Bob and Randy helped BBQ up the hot dogs and
hamburgers for us. After lunch we remained on the deck for a talk from
two wonderful ladies from the CDSS, Lin and Carol. They were primarily
talking about stubborn behavior and what it means. Carol taught us to
look at the whole picture and not to focus on the disability causing
the unwanted behavior. Make is simple and ask the right questions to
the child and things will improve. Lack of communication is a big component
to any confrontation no matter who you are. Try to understand where
the child is at and give them choices.
Carol
gave away a wonderful quilt which Danny from Oregon won. Danny is going
to leave home soon and be in his own apartment so this quilt will be
a wonderful wall hanging in his new place. Many thanks to Carol!
While
we were listening to our wonderful speakers CariAnn's brother, Kyle
and his girlfriend Des took the children to the playground and then
for a walk down to the lake.
After
the talk we all went down to the lake and then took the scenic tour
through the forest back up to the playground. Since Keith was in the
stroller they went the paved way but we all met up at the playground
and then went back and had another BBQ. Our ride home on the bus was
rather quiet. Everyone was a little tired and we never heard a sound
from any of the kids.
Thanks
to everyone for attending and making this conference a success. Many
thanks to Cam Clark Ford and the Ford St. Thomas CAW members at the
assembly plant for their generous donations. Most of the activities
were free for our members and it made a very affordable conference for
all.
Hugs
to all
Laraine
