Max picked up a new sign! He now signs "all done" and he even is initiating it by himself. Yesterday at one of his doctor appointments, they were trying to get his blood pressure and he started signing "all done". I was so proud! He now signs more, all done, and waves hi and bye.
I don't need to see you for two years. That is what I heard the genetics doctor tell us this week! He said that Max is doing well and he is being followed by all the doctors and therapist that he thinks he should be seeing. Prior to this appointment, we had a genetics appointment every six months. Yeah! One appointment to cut out of the rotation for a couple years.
On the RTS growth cart, Max was at the 50%ile for his weight and 25%ile for his height. He is following his curve well.
On Monday night, Ava had her first gymnastics program. The program gave family and friends a chance to see what the kids have been working on during class and an opportunity to perform before an audience. At the end of the program everyone received a trophy and ribbons. It was pretty neat and Ava was proud of herself. Her Grandma and Grandpa (John's mom and step-dad), Aunt Sara, and her cousins, Bridee and Lainee came to watch her. Which she thought was pretty cool. Before the program, we went to the bowling alley and the kids had fun bowling a game. Lainee, Bridee, and Ava
After the RTS reunion, we checked in to the Kalahari with the Piller family. We had a great time going to the water park, indoor theme park, and out for dinner at Kahunaville together. Everyone had a great time. Well, maybe not everyone! I kind of felt like I was torturing Max during the entire stay. It took him a long time to warm up to the water park, the indoor theme park was too noisy and overstimulating for him, and he did not like the MC and the loud music at the restaurant we ate at.
Thank you Piller Family for a great day!
Ava and Caroline at the Kahunaville restaurant. . .
Caroline on stage at the Kahunaville restaurant. Every half hour they get kids on stage to dance. Caroline had no stage fright! She hopped right up and got down! Ava and Max. . . Max after warming up to the water. . . Climbing the rock wall at the indoor theme park. John Kelly Caroline Ava John and Ava enjoying the water park. . .
Last weekend we went to the annual RTS reunion in the Dells. This is our second year that we have gone the reunion and I have to say it was much easier to go to this year. Last year I was nervous not knowing what to expect. This year, I looked forward to going and mingling with my RTS family. I had a few rough patches during the weekend worrying about the furture. But overall, the reunion was positive for me. There were about 20 families that attended with a head count of about 120 people. A big THANK YOU to Teri for all the planning. Max must have been "feeling the love" at the reunion because he showed off some walking skills. Dave and Janice (Papa and Grandma Foley) also came to reunion with us.
Max has been building confidence and taking steps again. . . and he ended up with a band-aid after falling in to one of his toys and getting a small cut at the end of his eyebrow. After his 2nd birthday in November and getting is Sure Steps, he seemed really interested in walking. But all of the sudden, he decided to take a break with learning to walk and choose crawling to get from point A to point B. Over the last week or so he has been wanting to give walking a try again. I hope it sticks this time and he becomes more confident with taking steps. The Sure Steps seem to really help him. He can hardly keep his balance when he doesn't have them on.
I married my husband, John, in June of 2002. We have two children, Ava and Max. Max was born on November 15, 2006 with a rare syndrome (Rubinstein-Taybi Syndrome). I hope to educate others about RTS and meet families on the same journey.