September 2011 Leads To Many New Beginnings

It has been a month of many new beginnings and a month of things coming to a close. We had a great time at Damein's Parent Weekend at the University of Missouri! Shane got to see the fraternity house for the first time and we both got to see a Division 1 college football game for the first time :) That weekend started the first of a series of lots of times in hotel rooms this month. I honestly never thought I would be tired of staying in a hotel. However, I can honestly say I don't care if I ever stay in another hotel again, though I know it won't be my last :) Darein was started on some progesterone this month along with her estrogen as her pituitary gland is not producing these hormones. There are several things that the pituitary gland controls such as human growth hormone, thyroid-stimulating hormone, follicle stimulating hormone, prolactin, ACTH as well as a few others. Her endocrinologist believes that the fact that her pituitary gland does not function as it is supposed to is because of her Antley-Bixler syndrome. We knew that her adrenal glands do not function properly because of the Antley-Bixler syndrome but are now finding out that it has affected her pituitary gland as well. There is nothing we can do to prevent further issues and just need to address issues as they come up. Her endocrinologist will continue to monitor her hormone levels and make adjustments as necessary. On a more positive note, we received good news today in St. Louis from her orthopedic surgeon. There has been no changes to her spine. Her curvatures are still at 32 degrees for the top curve and 35 degrees for the thoracic curve. She has had the back brace on now for 6 months. He will see her back in 4 months with no xray and then if things still look good he will check on her 4 months from that check up with an xray and as long as no changes she can come out of the brace at that time as she will be done growing. I am sure we will have follow up appointments to keep an eye on it but at least she can be done with the brace :) He gave us the okay to go ahead and start her braces on her teeth whenever we wanted and so I will check with her orthodontist this week and see if we want to go ahead and proceed or if we we want to wait until after the first of the year. Once we start the braces on her teeth we will start the 1 1/2 - 2 year process of preparing her for plastic surgery to adjust her jaw and then the second surgery consisting of a rhinoplasty. That being said, things always pop up and change and have to be adjusted so we will start with first things first. Darein started bowling this weekend for Champion Athletes of the Ozarks. I am very excited for this opportunity for her!! It is a free program for kids and adults with disabilities. Darein is not much for sports but her doctors as well as us as a family want her to be active in a way that she will have fun and be doing something great for herself as well. Through this program she gets to bowl during this season as well as attend some tournaments where she will compete against others at her skill level to help her to earn a medal for these events. They also do special events with them such as going to the Shepherd of the Hills Christmas Show in Branson and decorating a float and riding on it in the Springfield Christmas Parade. She also has the option to participate in Ice Skating, Golf, Basketball, Softball, Swimming, etc. My sister participates in a 5K run for her husband's cousin to help raise money for a program called Hippotherapy which is a program where kids with special needs get to ride a horse and they have an occupational therapist who works with the kids and horses to help the kids develop motor skills, confidence, etc. Since Darein loves horses so much I am going to check into this further and see if this might be a program that would be of benefit to Darein as well. Hopefully, if all works out she could start next Spring. She has been very active with Art Club every Wednesday after school, FFA, football games and church activities. I went to one support group meeting but haven't had that Saturday free again to attend again or to be able to get really involved with it. Hopefully, I will get a chance to start back soon. With the schedule in my house changing so much it is always hard to find your rhythm at first but I know as we try new things and work them in with the old we will figure out a schedule eventually that seems to work. I think it is important to take advantage of new opportunities as they present themselves and then start prioritizing things as we see what we want to stick with, what we don't like or what doesn't fit into our lifestyle and then come up with the best possible fit. Sometimes, it's just a matter of putting things on a back burner for awhile as well until we need a change and then we can make that adjustment. I'm loving the Fall weather and all of the many beautiful trees as they change colors and the new warm smells that Fall bring here in Missouri. Hope everyone's enjoying their new seasons and finding the things in their life that need to be put away and bringing out some new changes for the new season :)