2005 Get Together - Calgary


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