It's That Time of Year Again

Today was the first day that I could really tell that it's that time of the year again!!! I spent several hours on the phone as well on the computer in regards to Darein's health. It seems as though she always ends up with a lot going on this time of year. My posts from here on out will be a little more limited as Darein is getting older and I need to use a little more caution on what I post. She is a teenager now and I need to respect her privacy a little more on some issues than I have had to in the past. That being said, we have moved her Endocrinology appointment up from January to this month due to some issues. She is doing fine but we have some questions that need answered and her physician needs to get some answers on his end as well so that we know how to proceed. I got her a test scheduled for Friday, got her pre-registered and then she will see Endocrinology on the 21st to go over results. We still have a lab that needs to be done as well and so hopefully we can get this done this weekend prior to her appointment. I sent two emails to two of her doctors about issues. I feel very fortunate to have doctors for her that are so easily accessible. Her school is also wonderful and I am able to email one of her resource teachers about issues that come up. I find this to be very helpful for me to keep issues private and yet allow the people in her school to know things on an as needed basis. Darein will head back to St. Louis in October for a recheck on her scoliosis. Hopefully, we will get some good answers over the next few weeks. Damein is doing well in college and seems to be adjusting well. He is scheduled to stay there this weekend though as me and Shane are heading to Branson to celebrate our 20th Anniversary. Hopefully, by being there this weekend he will get a little more adjusted to college life. We have a busy next couple of weekends as we will be attending Parents' Weekend at MU and attend our first college football game with Damein and then Heritage Days will be here the weekend of mine and Shane's Anniversary and Darein will be active with her FFA club that weekend. Darein has joined Art Club and had a great time today after school helping to paint a mural in one of the classrooms. It is September now so it is time to fill out her application for the Venture Crew at the Dickerson Park Zoo in hopes that she is selected to be a volunteer. Between Art Club, FFA, church activities and possibly a volunteer program at the zoo she is going to be very busy this year. The challenge will be helping her to balance all of her extra-curricular activities along with her studies and still making sure that she gets plenty of rest. She doesn't participate in sports but is wanting to join Champion Athletes for kids with special needs. This organization would allow her to participate in physical activities that she otherwise would not be able to participate in due to ability as well as amount of time she could commit to a sport. She needs a physical and so when she goes later this month, we will get that paperwork and then allow her to participate as she is able. Each year that goes by presents its own set of challenges and adventures. I have joined our Family Reunion Committee and have been busy helping to plan for our reunion next year, this is a new first for me and has helped keep me busy. I thought things might slow down now with Damein gone but it seems just as busy as always and there is plenty to do. It seems as though I have found some new interests to keep me busy between the new activities Darein continues to be a part of, the Reunion Committee, keeping on eye on things from a distance as far as my son is concerned so that I can make sure he is keeping his priorities right while at college and joining a support group for parents of kids with special needs. I hope everyone enjoys the weather as we head into Fall!! We are loving it and just trying to fight off colds and stay healthy, hope you all are doing the same :)

August 2011

Wow! What an incredible month August has been. So many incredible events going on. Darein started back to school on August 11th as a Sophomore in High School. She is definitely growing up. She got a really cute older looking hair cut that looks adorable on her. She is excited about the new year. She is taking: World History, Algebra 1B, Web Design, Ag Science 2, English 2, Study Skills and Biology 1. She likes all of her classes so far and is really glad that she doesn't have P.E. this year. She has two teachers that have kids in the same grade and a teacher who is my parent's pastor's wife. It is so nice to have such a strong support system for her at school since her brother has moved off to college and will not be able to look after her this year. She is doing well medically so far. We went and got her a MRI of her brain to check on the adenoma on her pituitary gland as well as some hormone level labs and still need to do a 24 hour urine specimen to turn in. I did call to see about getting the results of the MRI and was told as far as the nurse could tell, nothing looks any different which I take that to mean that it is still there but not any larger or smaller which is a good sign for now. Darein will go back to St. Louis in October and get another xray of her back and she will be evaluated to see if the back brace is helping or not. If nothing has changed then we will get the all clear to start her on braces on her teeth. She is looking forward to applying for the Venture program in September which is a volunteer program at the zoo. She is hoping to work there some. I have also joined a support group mostly for autistic children but also for other children with disabilities and it is a great resource of information as well as networking with other parents. They also have many activities for the kids to participate in each month. I also found out that one of my cousins is on the board of a charity called Champion Athletes. Darein needs to get a physical and then she can participate in these activities. It is totally free and would be a great program for her to be involved in and so we are anxious to start that process as well. She was wanting to take up golf so this will give her a chance to try it out without the financial commitment of buying clubs, etc. They also do activities like bowling, basketball, etc. She is looking forward to checking it out but we have to be careful that she doesn't get too busy between the above activities as well as church activities and keeping up with her school work so we will have to work to find a good balance for her. It will be kind of nice to have her to ourselves and be able to find a schedule that works for her without having to work around her brother's schedule. We will miss him but we are always very busy with baseball with him so it will be good to focus on Darein's interests a little bit.
Speaking of my son, Damein has headed off to Mizzou to study Chemical Engineering with a possible minor in Business Management. He has turned into such an incredible kid and I am so very proud of him!!! He has been accepted into the fraternity Delta Sigma Phi and as far as I can tell so far it will be a great asset to his educational development. He has to maintain a 3.0 GPA to stay in the house. If he maintains a 3.5 GPA each semester he will receive a $500 scholarship each semester. There is a house chef as well as a house mom who cook and clean and care for the boys. They have a sound proof study room and must study 13 hours a week with an upper classman as part of their freshmen initiation. They also must be a designated driver 3 times a year. They are one of the only fraternities on campus that make their members become CPR w/AED and Community First Aid certified and they participate in philanthropy projects such as American Red Cross, Boys and Girls Club, Big Brothers Big Sisters, Caring for Columbia, Meals on Wheels, Special Olympics, The Wardrobe, The Shelter, Mid-Missouri Mental Health and March of Dimes. Damein's schedule consists of: Philosophy, Pre-Calculus, Chemical Engineering, Chemistry, and Business Management. He does not have a job yet but hoping he will find one on campus soon though it is most important that he figure out how to balance school, fraternity activities, social life as well as extra-curricular engineering activities and a job. He has a girlfriend here at home and so hoping that he keeps things prioritized appropriately.
In the midst of all of this...I am serving on the Family Reunion Committee, celebrating my 20th anniversary with Shane, just turned 38 and Shane will turn 40 and I am already starting my mid-life crisis. Hard when one of your kids moves out and is getting ready to start the rest of his life without you. I feel happy for him and excited for him while also feeling sad that he's gone and feel bad that I am continuing life and the new opportunities that will present themselves now that he is gone so that I can do more with my daughter. It's just a redirected focus and realizing that you are almost half way through your life and looking at things and realizing how much you have let your life be decided by circumstances that were out of your control as well as the consequences of bad decisions. So now, I have to figure out how to take the good from the past 40 years and quit letting the garbage from the past rule the next 40 years. It's a lot of change all at once and so we will see how I meet these new challenges and move forward but I am hoping for the best and expecting to be able to move forward with a vengeance by the time I reach 40. I still have 2 years left before then and by that point, Darein will be a senior and I will be used to Damein being in college so hopefully I will be in a better place then than I am now :) Hard to believe all the changes that Darein will encounter over the next 3 years both physically and emotionally. I hope it will be a positive change as we move through this phase and help to make her an even stronger person than she is now.

July, Always A Busy Month

I have not written in a month now as July seems to be such an incredibly busy month for my family these past two years. Last year, me and Darein went on our month long vacation with my parents to South Dakota, Montana, Wyoming, Washington, Oregon, Nevada, Northern California, Utah and Colorado. What incredible memories we experienced and will remember forever. Me and Darein grew so incredibly close during this time and I learned to appreciate her strength in a whole new light. Up until this point, I always worried so much about her health issues that I had never really taken much time to get to know who she was as a person. I found out I had managed to rob myself of an incredible relationship with this child. She is so incredibly funny and actually understands way more than I have been giving her credit for and she has a really good head on her shoulders. I also managed along with the help of my parents to get her talking more. She still doesn't say much and mostly observes things but its really not from not knowing what to say or because she is shy but more from a spirit that some things should not be said, just observed and learned from. I realized she knows way more than she lets on and it was nice to actually be able to talk to her about these things and now be able to understand how her mind works a little better.
This month, we have been getting Damein ready to head off for college at MU. Darein also had a follow up MRI of her pituitary gland to check on the possible adenoma there. Her endocrinologist also ordered an incredible amount of lab work to check on some hormone issues. Darein is doing good but we have to monitor certain hormones for her congenital virilizing adrenal hyperplasia and now that she has a possible adenoma on her pituitary gland, we have to monitor all hormone levels affected by the pituitary gland to make sure that there is no problems that the adenoma is causing. This is the safest way to tell if the adenoma is benign or not, by monitoring that it doesn't get bigger on MRI and that it is not affecting other hormone levels.
Darein and I also just got back from Orlando, Florida Disney World!! We went on a 5 day Women In Missions Conference called BLUME where we learned all different kinds of missions and allowed us to speak with missionaries and the work they were doing as well as hear speakers talk about being Fearless for God and saw an incredible artist doing amazing art work as well as incredible music. It was a great week for learning about God and participating in a few theme parks as well such as Epcot, Hollywood Studios and Magic Kingdom. Darein starts back to school on August 11th and so we will start picking stuff up this week for registration and then Damein's move in day is on the 17th. We are hoping though that since he is moving into a fraternity house instead of a dorm, that we can move him in a day before or a day after so that we don't have to fight that incredible traffic going on move in day :) It will be an exciting new year for us as Darein will be a Sophomore this year and Damein is moving out and away for his first year in college. Damein's major will be in Chemistry Engineering as of now and for his first semester of studies he is taking: Philosophy, Pre-Calculus, Chemical Engineering, Chemistry, and Introduction to Management. I think this totals 14 hours and he has 14 prior college hours so if he makes it through the 1st semester he will end up with 28 hrs by January and heading towards some sophomore classes from there.
In the meantime, Darein is doing great with her back brace and we go back in October for follow up to see if things have improved or not. Once they are done with an xray at that time and we get the all clear, then we will work towards putting some metal in her mouth and getting her braces towards the first of next year. She has to wear them for a year and a half prior to facial reconstructive surgery so we had to make sure she had tests such as her MRI and xray done before putting the metal in her mouth. We don't want to have to worry about not getting more important tests done for her overall health because she has metal in her mouth. This way, they will be able to get clear pictures and we get a clean bill of health for a year and half from MRI's or Xrays :)
Hope everyone has had a great summer and is getting ready to be back in study mode for the school year!!

Prayers Answered

This week has been absolutely amazing for answered prayers!! We have been worried non-stop about how to pay for Damein's college and the fact that our insurance is about to cap out at any moment on Darein if she has to have one more major surgery, especially a surgery like back surgery for her scoliosis. I have been trying to live in the moment and enjoy this time I have with my son before he heads off to college but have had a hard time trying to figure out how to take care of the responsibilities on my plate and balancing it with a good attitude and excitement towards getting my son ready for college. In the middle of the worry though, I would continue to pray that there was no way possible for us to take care of our children's needs and wants and just told God that our life was fully in his hands and I was trusting him to take care of everything. I continued on with Damein's college plans and obligations such as Summer Welcome and continuing to tell him that we would figure things out and though it was tough we were determined to make his dreams come true and that as always he had the support of his mom and dad as well as extended family and we would pull him through somehow. We also continued to follow up with Darein's doctor appointments and making plans for her braces on her teeth and talking about the fact that in another year or so it would be time for another set of hearing aids and we would need to prepare for how to pay for these things and start working on a plan to make it happen. Yesterday and today our prayers were answered :)
We found out over the weekend that Damein had enough financial aid and loans to cover his tuition and still had some left but we now needed to be concerned about his living arrangements. Yesterday, he was admitted into a fraternity and the housing is less than the cost of living on campus and the meals are included as well!! Family has been helping with his books, computer, and contributions to help with furnishing his room. We have a few more loose ends to wrap up but all in all what is left is manageable and doable!!!!
In the meantime, I have been calling non-stop trying to find out if Darein had been approved for disability through the State. Getting approved would give her Medicaid with a high monthly premium when we used it to help with medical costs. I finally received the phone call today stating that she had been approved!!!! They are still working on the budget but when she has major expenses such as braces, facial reconstruction, hearing aids, back surgery, etc...we only have to pay about $800 or so for that month and Medicaid will pick up the rest. This is huge as the State has finally deemed her disabled due to her congenital rare genetic syndrome, Antley-Bixler syndrome. This will allow us to proceed to file for disability for her so that we can have her all set up and taken care of without worry of insurance capping out or wondering how she will be able to support herself if she is only able to work part-time!! This is basically Step 1 but such an incredibly huge step that is long overdue. We can now make sure that our daughter continues to receive the medical care she needs now and throughout her life and will also allow us to be able to help our son more while he is in college since he did not receive any Federal Grants.
I've been listening to Joyce Meyer's podcasts and she is always saying, "Do what you can do and God will do what you can't". Even though I continued to pray and tell God that he would have to take care of things because I had filled out all the paperwork and put in all the time I could possibly put in for the betterment of my children I still wasn't sure if it would actually happen but I knew I had no other choice other than to trust God and so I continued to pray and continued to go about life. I know now without a doubt that persistence and prayer pays off and God does hear and answer prayers. I will remember this week for many years to come as it is truly a pivotal moment in our life :)

June Update

I took Darein to St. Louis to see her orthopedic doctor about her scoliosis. She is doing well, her curve hasn't got better but hasn't got worse either in the past 2 months. He will see her back in 4 months. He typically would only do an xray once a year but because we made some adjustments to the brace he says that he might make an exception and do an xray the next time he sees her. We go back in October and will evaluate things at that time. Her top curve cannot be braced as it is too high up but he does not anticipate it getting any worse which is good news. Her thoracic curve is still at 32 degrees. If it gets into the 40s or 50s then we will have to consider surgery but as of now, things look good.
While we were in St. Louis, we went to drop her 24 hr. urine specimen off at her geneticists office and they also drew blood and then were going to send all of it off to the United Kingdom for research. Darein is the oldest of 50 children with Antley-Bixler syndrome living and therefore they are recording her progress through puberty so that they can offer more information to other parents who have children with this extremely rare syndrome. We have no prognosis of what to expect as Darein gets older and her case is also the mildest of this syndrome so we are hoping to at least give other parents some hope and prognosis of what they can expect with their children with this rare disease.
Darein also so her ENT doctor this month and got a good report. We were concerned that her hearing had decreased but after a hearing test and an examination of her ear we were told that her malleus bone prosthesis is in place and her hearing is the same. We did however find out that she will need to wear her hearing aids for the rest of her life. Her conductive hearing loss will never get better and because her hearing loss is congenital it is too dangerous to replace the cochlear bone in her ear and therefore hearing aids will be a part of her life from here on out.
We went to see her gastroenterologist this month as well and found that her anatomy of her stomach is normal. She is most likely just suffering from anxiety and stress at school which is causing her stomachaches. We are also supposed to keep her cleaned out with Miralax and Benefiber as this may be causing her some issues as well. Her gastroesophageal reflux disease is being well maintained with her Omeprazole and as long as this is helpful then we do not have to worry about surgery at this time for this disease. We will work with her during school on her bowel issues and if she is still having problems then we will need to talk to her pediatrician about what to do with her anxiety and stress issues. Since she takes cortisol for her congenital virilizing adrenal hyperplasia we will most likely talk to her endocrinologist about the stress issues as well when she sees him next month. She gets stress doses of this medication when she is sick and her body is under stress as her body does not produce enough of this hormone but not sure how mental stress works with this disease so we will get more information on this as we see her endocrinologist next month.
In the meantime, we are getting Damein ready for college. We have come along ways over the summer and are almost prepared. We attend Summer Welcome session at the University of Missouri Thursday and Friday. He will get signed up for his classes, stay a few extra days and attend Fraternity Formal Recruitment and make sure that we are ready for move in day :) As sad as it will be for mom, I am very happy for him as I know he is excited to start this new journey of his life. He has had an adjustment period this year, being with family and still wanting to hang out with his friends that he will miss once school starts. We are trying to give him the space he needs and yet trying to push him towards being prepared for his next stage in life.
Change is rough but a necessary part of life so for now we are just trying to make the most of it :) Hope everyone is having a great summer!!!

Crazy Whirlwind Called Life

Life is so crazy right now it is unbelievable!! Sometimes life is so hard to keep up with and if you aren't careful it can feel as though you are drowning.
We have spent the past month cleaning Shane's mom's house out, filling up two huge roll-away dumpsters and having a garage sale. People tend to accumulate a lot of things over the years and eventually things need to be cleaned out and gone through. Most people do this when loved ones have gone and it makes it hard for the loved ones left behind to have to sort through. As much work as it has been, it has been nice to have his mom there to help guide us through the process and let us know what she wants to keep and what needs to be thrown away. Now that all the hard work is done, we will move on to other things such as cleaning, making home improvements and deciding what to sell on e-bay and craigslist. We will work on this over the summer, makes me want to do the same to my home and helps me understand the importance of purging things every few years.
Damein has decided to go to the University of Missouri as of this week and was invited to go on a float trip with Phi Beta Theta in July. He is quite excited to continue through the next journey of his life. He has picked up some applications for summer jobs and is going to open his first bank accounts tomorrow. He is learning to understand a few things about responsibilities of adulthood and I am very proud that he is asking questions and asking for guidance throughout this process. It shows that even at the rebellious age of 18 he still respects his parents' opinions and guidance which makes me feel good about the adult he will become.
Darein is doing well with her brace and wearing it for the full time of 18 - 20 hours a day. She goes for a hearing test, lab research for her geneticist, orthopedic appointment and gastrointestinal doctor appointment in June. Damein also has MU orientation in June and will get set up with housing and set his schedule for his first semester, etc. I really need to schedule an appointment for Damein to get his wisdom teeth pulled and I need to get a tooth pulled as well as need an eye appointment. However, my time in a day is running short so we will have to take it one day at a time.
My parents' health is starting to deteriorate some and they are reaching a point where they are needing some help so me and Shane will start working towards helping them with a few things as well.
Life gets a little rougher the older we get. So many responsibilities and trying to find that right balance between "the changing of the guards", if you will...that point in life when your children get older and start moving out of the house, your parents' health starts deteriorating and because of all of the changes in life your marriage changes to a new level as well. None of it is bad, just learning to adjust to life and relationships as they change. The older I get, the more I understand my responsibilities to others in my family besides just my own. I started out being frustrated that I was always busy, then moved to just being tired from the new lifestyle and have now progressed on to understanding that if I wasn't busy I would be bored and that it is nice to wake up every morning now with a purpose to fulfill for people that I love. Made me grow up a little more quickly than I would have chosen but understand now what a blessing it is to be able to repay someone for all that they have done for you. Life is kinda funny like that...you just have to roll with the punches because you never know what it will surprise you with. I have grown so close with Shane's family as well as mine over the past few months and learned a new respect for life and family. None of us are perfect but it is nice to know that your family and friends closest to you are always there for you no matter what! Makes the journey much easier to endure when the tribulations occur :) We could never get through all that we do without the support of our family!! My mom called and asked me to go with her to Tulsa this Friday as she needs a riding partner for the day and I told her I would go with her if I could and asked that she go with me to St. Louis with sis as Shane has to work and she has agreed. My sister also offered to go with me to MU in Columbia if I need her to though I think Shane is going to be able to go. I could not do all that I do with my kids if it weren't for all the help I receive from my family and for that, I am forever grateful!!
I know my blog tonight is a little mushy but I hope that you are able to take some time to appreciate the people in your life because they are the ones that make life a little easier to get through. We all need family and friends to laugh with, cry with and to help us throughout life in general. This has been my lesson for this month and I hope that you reading this will realize what the people in your life mean to you and take the time to let them know.

Options and Changes

Its kinda funny how life can change so quickly. Just as you decide on a path, see it through, things change along the way and then you adjust and get started on a different path only to find things changing once again.
When we had Damein, we started out with no plans. As he became a toddler we then discovered that he loved to play ball. As we encouraged and nurtured this talent we eventually hoped that he would grow to enjoy playing sports in school. Then before long we had to choose what school we wanted him to grow up in and the type of environment and values that we wanted him to be surrounded with. We decided on a small town, Fair Grove for him to complete all 13 years of school at. It was a nice town and good values and was small enough that we would get to know his friends well. As he started school he continued his interest in baseball and we entered him in the schools baseball team during the summer. We soon found that it was good to keep him active and a positive thing for him and his friends to participate in. We eventually started teaching him to be competitive to perform his best and along with that taught him the value and importance of always giving 100% towards anything that you choose to do in life. We allowed him to play several different sports throughout his school years. As life progressed forward, he eventually decided to narrow his interests and focus on baseball only. We continued to talk to him about what it would take if he chose to continue to play baseball through college but always stressing that he could not rely on baseball to get him through life and that it was just something to keep him focused and a positive thing for him to participate in throughout life.
His senior year he finally decided that he didn't want to play baseball in college and instead wanted to focus on his academics and wanted to go to the University of Missouri with one of his friends and become a chemical engineer. We tried to get him to go to Rolla S&T and play baseball but he lost confidence when they said he wasn't quite to that level and so insisted on not playing baseball and going to a big school. Throughout the year, we learned to accept this and finally became excited for him and all that life had in store for him.
A couple of weeks ago, someone thought that someone from Evangel University here in Springfield was there to watch Damein play baseball. He got excited and decided that he had another friend that was going there who was going to play baseball and so he wanted to check into it. He called and talked to the coach and the coach didn't act like he had heard of Damein but was positive and told Damein to keep in contact and he would see about meeting with him and seeing if he could place him on their team. Damein has now grown excited about the possibility of going to college and getting to play baseball as well. He has re-evaluated his academics and I think has decided on Computer Science and Chemistry degrees. Evangel is a Private Christian College with very good academics and seems as though it would be a better fit for Damein. We like the fact that it is small, close to home, Christian faith based and we would get to watch him play baseball as he would be close to home.
Damein filled out the application today, wrote his essay, sent off his references, paid his application fee, received his high school baseball stats, had his transcripts and ACT scores forwarded to Evangel. I still need to call FAFSA and get Evangel's school code added and get his MSU dual college credit transcript sent but other than that Damein will meet with the coach later in the week and see what the coach has to say.
If Damein is able to play baseball there and receive some money for that then he will attend Evangel. If he is unable to play baseball then I am guessing he will continue with his plans to MU.
Options are always nice to have and it helps when you are open to change. I love that my son has learned that he is control of his life and that it is okay to change and never too late. We are rushing around but have managed to get everything in order over the past few days with graduation week and everything. I continue to pray now for God to open doors where they need to be opened and slam shut doors that need to be shut so that Damein can continue to live in God's will for his life. I look forward to seeing what God has in store for him as I know he will be successful no matter what as long as God is in control.
Darein is doing a great job as always with her back brace. The heat is going to get to her more than anything I think this summer. We go back in June to St. Louis and see if there has been any improvement or not in her scoliosis. She notices that when she doesn't have it on that she tends to slouch more and her posture isn't as good. She will also see her pediatrician in June to review her ultrasound tests that she had and see if any further testing needs to be done before she sees her GI doctor towards the end of June. We will also talk about insoles or orthopedic shoes to help with her flat feet. I will also try to get her in to see her ENT doctor for a hearing test as her hearing is decreased. When we go to St. Louis to see her orthopedic surgeon she will also turn in some various labs to her geneticist for research. He will then send her labs overseas to the UK for the research to be done. June will be a busy month with lots of doctor appointments and getting Damein ready for college. I will be trying to enjoy my summer with Damein before he heads off to college and working on making the adjustment. He has grown up with such an incredible class of young people. I feel very fortunate that his class as well as my daughter's class both have many good qualities of character!! Character seems to be lacking so much these days from young kids and I am thrilled that there are kids that my kids are associated with that have not lost that quality of the importance of having good character.