October 2011 Still Changing

October has been a month of many changes! We started the month off with an appointment to St. Louis for Darein. She went to see her orthopedic surgeon to check up on her scoliosis. She is doing well with no changes. If she continues having no changes then she will be able to get her back brace off in May, which pleases her very much to say the least :) Her surgeon will see her back in February. He gave us the go ahead to start braces on her teeth. We went to set up the appointment only to discover that there are no providers in the 3rd largest city of Missouri that will accept her Medicaid Disability. There are a few providers here in Springfield, however either they are not capable of taking care of her complicated case or they require you to only have Disability and no primary insurance. That means that our options are either to pay our $1400 copay and then travel 3 hours to Kansas City every 2 weeks - 1 month for services or travel 4 hours to St. Louis every 2 weeks - 1 month for services, or to stay and have it done in Springfield and only use our primary insurance and pay the $5,000 out of pocket. We have chosen to have it done here in Springfield and so have decided to wait until after the first of the year to get this taken care of.
On a brighter note, Darein has been blossoming as a teenager and is doing incredibly well. She has started participating in Champion Athletes of the Ozarks and is enjoying bowling. She gets to bowl every Sunday and has participated in one tournament so far. She came in 4th out of 4 people on her team but it has been a good experience for her. She also has been taking violin lessons from the Pastor's daughter at church and is enjoying this very much. She has been active with her Art Club at school which meets every Wednesday and she appears to be continuing to excel in this area.
She was recently accepted as a volunteer through the Venture Crew at the Dickerson Park Zoo. She applied last year and was denied so this was quite an accomplishment for her to be accepted this year. Even though it is a volunteer position, they treat it like a job. The applicants had to go through an application process where they told why they wanted to be a part of this program as well as had to get 3 recommendations and meet the deadlines. She will be attending orientation this Saturday and will go through a background process and learn what her duties and responsibilities will include as well as attend her first Venture Crew meeting and meet others in the program. She also took a test to see if she qualifies to be in the Ozarks Technical Community College Vo-Tech program next year. She did great on the test and should be able to attend the Vet Tech program they have there next year as long as she finds out that she will have the high school credit requirements needed to be in this program. By participating in the Vet Tech program she will receive high school credit as well as college credit if she chooses to attend that college after high school which is what her plans are at this point. I am so proud to see her working towards accomplishing her goals. She wants to be a Vet Tech and is making good decisions towards meeting that goal. So incredibly overwhelmed at the fact that this child is not only overcoming her health issues but is succeeding in spite of those obstacles!! A few years ago I would have just been happy for her to be completing high school in a few years and now we are talking about her furthering her education in spite of her disabilities and the challenges that they bring.
Damein has been doing incredibly well this first semester at school as well. I got to hear him speak for the first time at an event at his fraternity house at Homecoming. It wasn't much, just a basic introduction of himself as a pledge to the Alumni but was still good to see him in action as a member. He has quit his job this semester as the hours was not working for his schedule. He has many responsibilities in the house this semester as a pledge along with keeping up with his school work. He will get another job next semester when his house responsibilities decline. He had 12 hours of college credit out of the way as a Senior in high school and is taking 13 hours this semester. As of now, he has a 3.0 GPA. He is planning on increasing his credits next semester to about 15 and hoping for a higher GPA. He seems to be adjusting to college life rather well and is enjoying the experience.
We are getting ready to move into Winter and with the new season brings many obstacles for Darein. The season will be busy as she turns 16 towards the end of November as well as all of the hustle and bustle that comes along with the holidays. The cold also flares up her Chronic Regional Pain Syndrome which leaves her in pain, sometimes unable to walk and depressed. My hope is that she will stay active so that her body stays warm and will help keep her CRPS in remission. It's a fine line trying to figure this out. I need her to be active so her body doesn't have time to rest causing the CRPS to flare up but she also can't get too worn down either as she wears down easily as it is with her Antley-Bixler Syndrome. In the past I have given her lots of rest throughout Winter so that she can keep up with all the events of the season. However, while she is willing to be active in things this Winter I feel it is important to keep that enthusiasm and interest up in hopes of combatting the CRPS and problems that comes along with that.
I hope everyone enjoys the change in weather and I can't wait to be seeing pictures of everyone's first snow and all the fun that comes along with that :)