This past summer our family of five traveled to Minnesota to attend our first bi-anniual PKS Kids Conference. Lucy was diagnosed with PKS in July 2016, and this is the first conference we have been aware of and able to attend. The conference was located at the Great Wolf Lodge in Bloomington, MN. We arrived Thursday evening, just in time to attend the opening dinner and registration.
We were greeted by familiar faces from the PKS Facebook group and said a few hellos. They had a raffle and introduction of every family that was there. We were included in the 11 new families that had never attended the conference. We sat by the Muhlestein family from California. We met them a year previous while they were in town for a wedding.
Friday morning started as we dropped off our three kids at the childcare for all PKS kids and siblings. The board planned a fun filled day with activities and crafts for the kids to do while the parents were in sessions undisturbed.
The morning sessions were informative and interesting. The first session was Dr. Ian Krantz, an active researcher in PKS and associated with CHOP. He talked about PKS being 1 in 20,000 live births. He mentioned there are 20-30 genes on chromosome 12 and a couple of those that are really critical. That must be why having 2 extra copies of the 12th chormosome can "mess things up" sometimes. Those cells turn off and on to communicate with the body. Sometimes the extra piece of the 12p chromosome drops off when cells divide and in that case it creates mosaicism where there's not extra 12p pieces in every cell. Dr. Krantz mentioned a drug called AICAR that they are testing. They are trying to treat kids to have less extra copies of the 12p chromosomes. They are in very beginning stages of this and just doing it in petrie dishes but it's an interesting thought. There was more specific scientific information that I can't remember exactly, but basically Lucy is a miracle :)
The next session was split in two sections, with more PKS overview and marriage therapy. I went to the marriage class and enjoyed the discussion on the role of emotion vs. the role of relationship. Some of the other parents of PKS kids talked about their own experiences trying to stay connected to their spouse and being vulnerable. The next session was on wills and trusts. A special-needs specialist lawyer from Minnesota came to discuss ideas and options for now and in the future when Lucy turns 18.
We picked up the kids for lunch and brought Lucy back to the room for a nap. After lunch I went to a session on IEP's (individual education plan) and ideas to share your child's personality with other professionals. Later that afternoon we met with Dr. Krantz in person with Lucy as well. Two years ago we exchanged emails about Lucy and how well she was doing, considering the diagnosis. He was amused as she walked around his office reciting songs and eating snacks. At one point she found an apple of his on the counter, she picked it up and took a bite out of it and continued eating the entire thing. I asked Dr. K what can explain why Lucy's doing so well, and he said there's a few hypotheses but he can't say exactly why (too many factors playing into the puzzle, I suppose). After sessions ended our family went to the Great Wolf Lodge water park and enjoyed the slides and fun.
Saturday morning began with water therapy for Lucy and Ben. We then enjoyed a nice buffet breakfast at the Great Wolf Lodge and then Ben and Lucy went to a massage therapy session where he learned good techniques for calming and comfort. The rest of the afternoon we spent at the Mall of America. We had a blast at the Nickelodeon Amusement Park, Crayola Experience and other fun stores. Later Saturday evening PKS Kids hosted a superhero dinner party for one last get together. They had capes and masks for everyone, photo booths, an ice cream truck, and we said our goodbyes to wonderful families. They took one last group picture that had almost all the 50 families that attended the conference. Although each of our kids with PKS may be "playing a different position" in the PKS journey, it is nice being on the same team and having the community and connections.
Friday morning started as we dropped off our three kids at the childcare for all PKS kids and siblings. The board planned a fun filled day with activities and crafts for the kids to do while the parents were in sessions undisturbed.
The morning sessions were informative and interesting. The first session was Dr. Ian Krantz, an active researcher in PKS and associated with CHOP. He talked about PKS being 1 in 20,000 live births. He mentioned there are 20-30 genes on chromosome 12 and a couple of those that are really critical. That must be why having 2 extra copies of the 12th chormosome can "mess things up" sometimes. Those cells turn off and on to communicate with the body. Sometimes the extra piece of the 12p chromosome drops off when cells divide and in that case it creates mosaicism where there's not extra 12p pieces in every cell. Dr. Krantz mentioned a drug called AICAR that they are testing. They are trying to treat kids to have less extra copies of the 12p chromosomes. They are in very beginning stages of this and just doing it in petrie dishes but it's an interesting thought. There was more specific scientific information that I can't remember exactly, but basically Lucy is a miracle :)
The next session was split in two sections, with more PKS overview and marriage therapy. I went to the marriage class and enjoyed the discussion on the role of emotion vs. the role of relationship. Some of the other parents of PKS kids talked about their own experiences trying to stay connected to their spouse and being vulnerable. The next session was on wills and trusts. A special-needs specialist lawyer from Minnesota came to discuss ideas and options for now and in the future when Lucy turns 18.
We picked up the kids for lunch and brought Lucy back to the room for a nap. After lunch I went to a session on IEP's (individual education plan) and ideas to share your child's personality with other professionals. Later that afternoon we met with Dr. Krantz in person with Lucy as well. Two years ago we exchanged emails about Lucy and how well she was doing, considering the diagnosis. He was amused as she walked around his office reciting songs and eating snacks. At one point she found an apple of his on the counter, she picked it up and took a bite out of it and continued eating the entire thing. I asked Dr. K what can explain why Lucy's doing so well, and he said there's a few hypotheses but he can't say exactly why (too many factors playing into the puzzle, I suppose). After sessions ended our family went to the Great Wolf Lodge water park and enjoyed the slides and fun.
Saturday morning began with water therapy for Lucy and Ben. We then enjoyed a nice buffet breakfast at the Great Wolf Lodge and then Ben and Lucy went to a massage therapy session where he learned good techniques for calming and comfort. The rest of the afternoon we spent at the Mall of America. We had a blast at the Nickelodeon Amusement Park, Crayola Experience and other fun stores. Later Saturday evening PKS Kids hosted a superhero dinner party for one last get together. They had capes and masks for everyone, photo booths, an ice cream truck, and we said our goodbyes to wonderful families. They took one last group picture that had almost all the 50 families that attended the conference. Although each of our kids with PKS may be "playing a different position" in the PKS journey, it is nice being on the same team and having the community and connections.
