TSSUS Conference in Portland, Oregon

I'm finding a little time to post more of our summer travels so here goes..... We came home from Wyoming with a few extra people in tow for the week! My wonderful sister-in-law, Robin, and my nephew, Kolby and nieces, Baylee and Taylor, decided to come for a visit. We had a great time. The kids played and played and played some more! We also went to Zoo Boise which was lots of fun too. We were sad to see them go but are excited to see them again this weekend! Here's a cute pic we got of the kiddos(not an easy task with these five)!

After that, I had one busy weekend and a few days at home and then Abbie, Kallie, and I flew to Portland to meet up with my Mom and attend the Annual TSSUS National Conference. For anyone who doesn't know, TSSUS stands for Turner Syndrome Society of the United States. Our "miracle child", Kallie, was diagnosed with Turner Syndrome when she was a few weeks old after a near death experience related to a heart abnormality commonly found in girls with TS. This is the second time I've been to the conference and I've found both experiences extremely helpful and wonderful. We go and meet other girls and women with TS and also parents and grandparents of girls with TS. We get to pick and choose which speeches to listen to and most are very informative and helpful, given by doctors or other professionals who work with TS girls on a daily basis. Abbie and Kallie had so much fun attending the children's group for TS girls and their siblings, ages 6 and under. The women who are in charge of this group are amazing and I had the opportunity to get to know them last year and was delighted to see them again this year. They are so great with all the girls and Kallie just loves them and loves to play with them. Here is a pic with one of them. Her name is "Miss Nikki" and she has a younger sister who has TS. Her entire family is very involved in the Society and we love and appreciate their service!

This year the TSSUS wanted to get the word out that any girl who falls below the 10th percentile on the growth charts should be tested to rule out Turner Syndrome. The reason for this is that the earlier a girl is diagnosed the better off she is in terms of health and quality of life. There is a link to the TS website with much more information on this subject on the side of my blog under the heading "Sites I like". If you are interested, please look to this source or feel free to contact me with questions as there is a lot of misinformation out there. I could talk about Kallie and her TS all day because it fascinates me and directly affects my life, but I won't!

We spent most of our time at the Sheraton Hotel participating in conference events and swimming in the pool, but we also had time for a few fun outings. At the conference we ate and attended lectures and social activities. We also signed Kallie up for some research studies related to her heart and her TS. The girls had lots of fun participating in activities with their children's group which included an activity with reptiles, ie: snakes, alligators, lizard, etc.... Not exactly my(or Kallie's) idea of fun but Abbie thought it was fantastic. They also made many friends and learned a little more about TS themselves. This of course led Abbie to ask some questions..... "Why does Kallie get to have Turner Syndrome and I don't? I was born first!" Silly girl!

Saturday night was a "Beach Party" for everyone over 21 and some fun activities for the kids, but we had other plans. Karlo's twin nephews had just returned from their missions and were hosting a get together at their home 2 hours north of Portland in Lacey, Washington. So we decided to take a little road trip and see the Clark Family. Laurie Clark is Karlo's sister and about a month after this trip she passed away from terminal cancer. We were saddened and are holding this special memory of our time with her and her family close to our hearts.
It was, of course, a great party with yummy food and good company. It was great to see the outpouring of love and support that the Clarks have received from the friends and "family" that they've created in Washington.

On Sunday the conference ended and we decided to do some sightseeing. We first went on a riverboat cruise on the Willamette River through downtown Portland. This was an activity offered as a part of the conference and was, in all honesty, a little boring. The best part for the girls was that they got to ride a bus, a train, and a boat all in one day! Here are a few cute pictures from the cruise. They are mostly of Abbie as Kallie fell asleep shortly after the cruise began and slept until the end!

After the cruise we hopped in our rental car and drove about 20 miles east to Multnomah Falls. It's a beautiful waterfall with a small hike to a bridge about halfway up. People can hike all the way to the top, but we decided that would have to wait for another time. Abbie and Kallie had so much fun there and were so cute together. Here are some cute pics from this outing....

After Multnomah Falls we made our way to the Portland Temple to visit the grounds and see the beautiful House of The Lord. It is always so peaceful at the temple and a great way to end our evening.

On Monday we got up and got checked out of our lovely hotel and tried to do a little more sightseeing before we needed to be to the airport. We decided to visit a beautiful old mansion that once belonged to a family who founded The Oregonian, a prominent newspaper in the early years of the settlement of Oregon. It is the Pittock Mansion and it has been fully restored and is absolutely beautiful plus it has an amazing view overlooking the city and looking straight out to Mt. Hood. Of course, the view was much prettier with Abbie in it!

My favorite room was the music room!

Abbie and Kallie just had fun being together!

All in all, it was a great 5 days. We all missed Karlo, especially Abbie, and we look forward to having him come to one of these conferences with us sometime. We are also very grateful to Grandma for her love for us and willingness to help us make this awesome experience possible!

Sorry for such a looooonnnnng post, but I hope you've enjoyed it! Until next time.....