She has been doing incredibly well over the past few months! She has straight A's for the first time in school :) As most of you know, me and Darein have been desperately wanting to start a Foundation of sorts to get exposure about Antley-Bixler syndrome as well as to help other families just finding out their child has this. However, I was struggling with how to get it off the ground and make it work and hadn't made connections yet with other families with this syndrome. For those of you that know me well though know I wasn't about to give up and know that I'm always researching and keeping my eyes and ears open. I finally made that important connection by coming across a Facebook page called Antley-Bixler Syndrome Support Page. I connected with the two founders of that page and have made more connections with other family members who have children with ABS. As several of us have talked we found we all had a common ground of wanting to raise awareness about this syndrome and so one of the mothers made a connection and got the website started. It will go online January 1, 2013. I will have my own e-mail for the site so that families and physicians can contact me for information as well as other parents. Me and Darein are very excited about this new venture and the good that can come from this!
Darein is still busy bowling with Champion Athletes of the Ozarks and got to golf recently as well for the first time. She really enjoyed golfing and can't wait to learn more! She is also keeping busy with the Venture Crew at the Dickerson Park Zoo. She is getting information about a Veterinary Technician program at Crowder College and has about decided that she wants to attend college there. Attending college at Crowder would mean she needs to learn how to drive and would be on her own away in a dorm. Both of these things make me and her both a little nervous but we have decided to overcome our fears and push forward to help her achieve her dreams. She will check into a Driver's Education program this summer and work on taking more responsibility about things. I have to learn to hold back a little and let her learn some things on her own. This will be more difficult on me than her I have a feeling :)
We got good news at Darein's orthopedic surgery appointment. Her curve was 1 degree less at only 41 degrees and therefore she doesn't have to go back in the brace and she doesn't need to be seen now for a year! Her endocrinology appointment has gone well also. Mainly we have to work on getting her weight down so we will start working on that more. We are pressing forward on her jaw surgery now. She got her palate expander out this month and she will have her wisdom teeth out and get a nasendoscopy to check and make sure her palate is strong enough to endure the surgery. Those things will be done in December or January as we are planning that she will be ready for surgery next summer. Orthodontics and plastic surgery will be her main appointments over the next few months as we get prepared.
Damein is doing well in college and seems to be settling in this year. We are very proud of him and all the progress he is making. My husband is working hard as always and we all are doing well. I will try not to wait so long next time to write....hope you all have a safe and Happy Halloween!!!
