November, A Month Of Thanksgiving

November is one of my favorite months as it is a month of Thanksgiving. Thanksgiving is one of the few holidays that me and my family truly cherish even above Christmas. Yes, at Christmas time we celebrate Christ's birth and yes that is an important holiday to recognize. However, Thanksgiving is the holiday where we get to give thanks to our Lord for all that he has done for us in our lives. Darein was born this month and therefore I feel as though it is an extra reminder from God that I need to remember to give thanks for all that he has done in our lives.
They say, what doesn't break you will make you stronger. They also say, God doesn't give you more than you can handle. I find myself thinking, I don't really care if I'm that strong and wondering why I have to be so strong when so many seem to have it so easy. Sometimes, I just want to have one thing good after another happen and then I will be happy.
However, no matter how bad or good the year has been I am reminded every November of why I am so thankful. The one constant thing in my life besides God is my children. No matter how difficult life is, no matter how many obstacles face me I can always count on my kids to make me smile. They may have their ups and downs and I may have my ups and downs with them but we always find a way to get through things together and nothing makes me smile bigger than sharing in their good fortune and the things that make them light up. They are the one bright spot in an otherwise very dark world.
Darein has overcome many obstacles with her chronic health issues but she grows stronger every day and it makes my heart smile. Damein may not have those same obstacles to overcome but he has his own set such as being the oldest and being a role model to his sister. He also meets high expectations from his parents who constantly push him to be all that he can be so that he can live an incredibly happy life with as few issues as possible. No matter what your circumstances in life are I hope that you have reflected on this month to truly and sincerely be happy for everything that you have. You may not have a perfect marriage or perfect children or the perfect job, etc but your life is the way it is on purpose and for a reason. It is up to you to trust God and live your life the best way that you can, the good along with the bad. Sometimes, it is important to take a day, a couple of days or a week to get some downtime, reassess your priorities and prepare to face the world head first. November is the perfect month for this kind of self reflection as the holidays can be very depressing for many for a number of reasons. I hope you will be able to find some time out for this to help get through those "winter blues".
An update on my kids this month: Darein is doing well and enjoying her volunteer time at the zoo. She is done with bowling now with her Champion Athletes of the Ozarks group but will be attending the Shepherd of the Hills show along with me and her bunch from Champion Athletes Saturday night as well as being in the Springfield Christmas Parade next Saturday with her Champion Athletes group. She will then be taking some downtime from this organization while she focuses on trying to get her 16 hours a month in at the zoo. She doesn't have the stamina to work a whole day so therefore it takes up more days for her to get her time in and with the cold it will make it more difficult as well. She is enjoying Art Club and Poi after school each week. She has taken some time off from some of her church activities as she is trying to adjust but is hoping to pick that up more now that she is taking a break from Champion Athletes.
Damein is doing well in college and enjoying it very much. He has brought his grades up this last week and so hopefully he will do well on his finals to pull out a strong first semester. He is proving true to his values as well as proving his dedication and hard work towards his grades. He has been responsible with his money and we are very proud of how well he is adjusting.
I most likely will not be writing again until after Christmas and so I hope you all have a very Merry Christmas and a Happy New Year! If you don't make New Years Resolutions try to at least make one to be more positive next year and not to let the little things become such big things. These will be my New Years resolutions for next year anyways as I have struggled in this area this year. Take care and God Bless :)

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 :)

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 :)

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.

Busy month of April

This month has proven to be extremely busy. I haven't really found out anymore about Darein but she is doing well. She was able to go to school every day last week without getting sick and made it through this week as well. I received her doctor's note from the urologist stating that he assumes the stones have moved into her digestive tract and stating that they had been present for the previous two months. As much as we have going on this month, me and Shane have decided to take a break and will call her pediatrician next month once school is out to proceed with the next step in her care. She has already missed lots of school due to not feeling well and she is scheduled to see her GI doctor in June so we don't want to pull her out of school for more tests and appointments unless necessary. She has been doing a great job with her back brace. We are up to 14 hours tonight and she has done a fantastic job of wearing it. She decided to take a break for a couple of hours this evening as she wasn't feeling real great and had a headache. We took it off for two hours and then placed it back on her to finish her time up. She is only 4-6 hours away from the goal of 18 - 20 hours a day.
In the meantime, Damein has been having about 3 baseball games a week which has kept us quite busy. He is doing well and was on the high school sports show on the radio the other day and did a great job with his teammates speaking. We have been busy getting him ready for his senior prom. He didn't go to prom last year and so this is a big deal for all of us this year. We met his prom date last weekend at the tuxedo place and picked out his tuxedo. I can't wait to see him in it! Her dress is bright pink and so we picked out a patterned pink vest and solid pink tie with a black tux and white undershirt. I haven't seen him in a tux since my sister's wedding when he was about 3 years old!! We go tomorrow to pick out her corsage and his boutonniere. Prom is Saturday and he is going to pick his date up at her house where we will get pictures and then follow them over to a friend's house where they will meet 9 other couples and all the parents can take pictures. They are going to eat at a little Italian restaurant downtown and then head over to prom!
Shane is taking the week off and we are going to help his mom clean some things out at her house and then have a big garage sale over the following weekend! Lots of repairs and work to be done.
Damein is set up for his orientation at the University of Missouri for this summer! We head up there for two days in June. I still have to reserve our hotel room. I will be calling tomorrow or Monday to get Damein set up in a room at the dorms and then have to call and get him set up for Fraternity Rush which is the next day after orientation is over. He and his friend will be attending the Fraternity orientation to see if they want to join a fraternity and if so, which one they are interested in. Thankfully, we will be carpooling with another couple so that we can leave on the 2nd day after orientation while the boys stay another evening for their fraternity orientation.
Time seems to be flying by so fast this year already!! Before I know it, Damein will be graduating in a couple of weeks. We will be taking care of his graduation and graduation parties and finishing baseball up in May and then we move into June where it will be time to head back to St. Louis for a back brace check up for Darein and Freshman orientation at college for Damein. In the middle of the busy schedule me and Darein will also be participating in different fundraisers to help raise money for the Acteens Blume trip in Orlando Florida in July. Darein and I will be attending the trip with her Acteen group for about 4 days and Darein is super excited! We get to stay on the Walt Disney World Resort, get passes to Disney World and Epcot Center, attend a day at Epcot Center with other Christian girls to learn about missions and Darein gets to ride on an airplane for the first time in her life, which she is looking forward to very much :)
We are still waiting to hear from the Social Services Department to see what, if anything that Darein might qualify for for help with her medical bills. I called the other day and they promised me they would go ahead and get her records sent over to the medical review board and so now we wait some more. Damein should also be receiving his ACT results next week sometime so we can see if he scores well enough to qualify for any other scholarships. He wants to take it in June as well and he was told by his high school counselor that we could check back with FAFSA in June and see if anyone turned anything down that he might be able to receive, benefits wise. We still also have a few more things to fill out with the college as well. August will be here before we know it and it will be move in day for Damein for college and back to school for Darein. I am trying to slow things down as much as possible but it seems as though there is so much to do and not enough time to get everything done. I just want to take so much time to enjoy my son before he heads off to college, such an adjustment. The more time I want to spend with him, the more he is wanting to spend time with his friends that he will miss :)
In every season, there is a time for change and these are one of those seasons with so many changes. I have been looking around lately and noticed so many beautiful Dogwood trees. As we enter this Easter weekend I am reminded by the Dogwood trees of a beautiful poem that I would like to leave you with.

THE DOGWOOD TREE
Anonymous

When Christ was on earth, the dogwood grew
To a towering size with a lovely hue.
Its branches were strong and interwoven
And for Christ's cross its timbers were chosen

Being distressed at the use of the wood
Christ made a promise which still holds good:
"Not ever again shall the dogwood grow
To be large enough for a tree, and so

Slender and twisted it shall always be
With cross-shaped blossoms for all to see.
The petals shall have bloodstains marked brown
And in the blossom's center a thorny crown.

All who see it will think of Me,
Nailed to a cross from a dogwood tree.
Protected and cherished this tree shall be
A reflection to all of My agony."

Happy Easter All!!

With Answers Come More Puzzles

I received a call this morning from Darein's urology surgeon's office stating that the doctor had reviewed the xrays and ultrasounds and found that the densities had moved and were now in her digestive tract and were found moving on the film. It is still unclear what these are but it is now clear that they are not kidney or gallstones. Her kidneys, bladder, and gallbladder look good. He is referring her back to her pediatrician for further follow up. The nurse recommended that maybe we would want her GI doctor to take a look at her and said that the pediatrician might want to do a CT but it definitely was not stones. So now, Darein is getting sick to her stomach weekly and we are back at square one trying to figure out why.
I think that it could possibly be allergies as we have added animals back into our home as Darein loves to be around them so much. I will place her on some Claritin and see if this helps any. I did call her GI doctor to set up an appointment and he will see her towards the end of June. In the meantime, I will work with Darein and the Claritin to try to rule out allergies. I also will call her pediatrician in a few weeks to discuss if she wants to run any tests or not prior to her appointment with the GI doctor. I also want to discuss with her if Darein needs insoles, orthopedic shoes or needs to have her orthopedic doctor who is treating her scoliosis see her and treat her for her flat feet. I did find out over the weekend that her dad had flat feet when he was little and had to have orthopedic shoes so it is genetic and not from her syndrome.
Overall, Darein is doing well with her back brace. She worked up to 4 hours today with it. As we have started the school week, we will start incorporating her wearing her brace in the evening as well as start having her sleep in it in order to increase her hours as needed. Hopefully by next week she will be able to start wearing it to school.
Hope everyone got their work week started off good and have a great rest of the week!

A Day In St. Louis

We took Darein to St. Louis yesterday and so I thought I would give an update on how things went. We did receive help from Children's Miracle Network for traveling expenses and they are going to reimburse us for the money we are out for Darein's brace. This is a great organization! The application process was very simple as well as the interview process. We have used them in the past but forgot how much it helps and how nice the staff up there is. They are really a great group of people to work with! We decided to make the trip in one day as Damein had a baseball game Thursday night and we decided we would get close to the same amount of sleep whether we left that night or waited until morning.
Our first appointment of the day was to head to the orthotic lab where Darein's back brace was made. They had her try it on and then would take it off and trim a few spots here and there to make it fit her a little better. It is a hard plastic brace with soft padding on the inside. She has to work up to wearing it for 18 - 20 hours a day. Once we were done getting it fitted a little better to her we headed over to the orthopedic doctor's office. The doctor came in and saw her and talked briefly. I'm not a fan of her doctor right now as he has the ego of a surgeon going on and his ego is quite huge. He is a great doctor I think, I am just going to have to talk to him quite a bit on things and push my questions and concerns in order to get a better repoire with him. I haven't ran into this issue too much but usually when I have, I find that if I just let them know that I am a concerned parent and that I do take an interest in my child then they get a little better over time. He doesn't know anything about Darein's Antley-Bixler syndrome and therefore treats her as any other child. He was pretty harsh about her weight and the fact that the more she loses the better off she will be as far as her scoliosis. I know that he has valid points and I understand where he is coming from but he doesn't know how much she has already lost and the fact that her weight was put on by all of the medication she had to take when her Chronic Regional Pain Syndrome was flared up. He will over time, learn these issue and I chose my battles this time carefully. Darein's main concern was that the back brace would help with her pain. Unfortunately, he said that it might help but that was not the purpose of the brace. He did not offer her any kind of relief for her pain other than to state that she needs to remain active and the more weight she gets off the better she will feel. I left things there for now. He measured her curve with a scoliometer and said that the curve was the same as last time. Even though he requested we bring the xrays up from Springfield again so that they could enter them in their system, he did not take them today and told us to bring them again next time so they could compare them to the xrays that they would be taking when he sees her back in two months. We will take the xrays up there one more time and then if they refuse to take them from us at that time, I will not bring them up there anymore as they will have the initial xray they need from their hospital. He thought the brace fits good and said that she can do anything in it but swim, bathe or tumble in it. She wore it one hour yesterday once we got home and we will increase it by one hour a day for a couple of weeks until she is able to wear it the length of time that she needs. We will go back to see him in June, get an xray, have the brace adjusted and padding added anywhere that is necessary and see where we are at at that time.
Once that appointment was over we drove around St. Louis a little bit looking for some place to eat before our next appointment with Darein's geneticist. I knew that Shane had told me that Springfield was known for its restaurants but I guess I never fully appreciated that fact until yesterday. We drove all over trying to find a restaurant, I couldn't believe that basically they only have restaurants in certain areas of St. Louis and then you have your choices. We finally decided on Captain D's which was one of two restaurants between the two hospitals. We showed up at Cardinal Glennon hospital for our last appointment of the day after lunch. We were going to meet with Darein's geneticist who has seen her since birth. Darein saw him until the age of 10 which is when he diagnosed her. Once he diagnosed her, he had an opportunity in North Carolina and moved there. I have kept in contact with him over the past 4 1/2 years via email as he is the only geneticist that knows much about Darein's syndrome. He had asked for some information on Darein's progress as well as some recent photos a few years ago so that he could send some information over to the United Kingdom where they continue to research Darein as well as other children with this syndrome. He told me yesterday that the article from that research is not quite ready yet but that physicians told him that she was getting close to being done with it. Darein's geneticist was extremely excited to see her and so very impressed with how well she was doing. He made sure to let her know that she was rewriting medical journals and offering other families lots of hope by her progress as she is one of the oldest children with this syndrome still alive. He tried to emphasize to her the importance of all of the research that she does and how much hope it offers other families. He asked questions about how she was doing and performed his typical physical exam. We talked about several things of concern as we as parents are still trying to figure out Darein's prognosis in life and trying to anticipate any issues we need to be sensitive to. He showed us how bad her curve was, which I hadn't had a chance to get a good look at up until this point. He stated that everything going on with her is related to her Antley-Bixler syndrome and the only thing that he's not sure about is the chronic regional pain syndrome. He says it is like "phantom" pain, which is where you lose a limb and have pain where that limb should be. Only obviously, she still has her limb. He says that a lot is not known about chronic regional pain syndrome and doctors don't understand it and are still continuing to learn about it and the causes, etc. He was concerned about how stiff her ankles are now as he doesn't remember them ever being that stiff before. He checked her other joints and her shoulders, elbows and hips have limited movement in them as well and are somewhat stiff. He found it peculiar that her knees however were not stiff, which he would have expected them to be. I told him that Darein was complaining more and more of overall joint pain so he made note of it. I also told him that she had some fused bones in her ankles as well as in the top of her ribs. Since Antley-Bixler syndrome is a musculoskeletal issues, her bones and how they develop is very important to our knowledge of this disease. Most children with this syndrome have had organ issues and therefore haven't lived to the point of puberty and so not much is known about how this syndrome will affect her bones and bone growth as she enters this age and the problems that it may or may not cause.
He also had her walk barefoot and it was noted that her ankles roll in and she is extremely flat footed. We talked about the need to get her some insoles to wear in order to help this issue. I will also start doing more physical therapy on Darein regularly to try and loosen her joints up and see if this helps.
We talked about the abnormal labs when we tried to take her off of one of her medications for her adrenal hyperplasia and talked once again about the fact that she does not have typical congenital adrenal hyperplasia and there are still puzzles with her and this disease.
I asked him if I should be concerned about any of her organs failing since most of the other kids have had problems with this. He stated that her heart is in good shape so no worries there. He said that as far as her lungs go, they should be fine. Where she will have problems with her lungs is if her curve gets bad enough that it compresses the lung that she is curving towards and will expand the other lung as there will be more room on that side. He said it would make her more susceptible to pneumonia and respiratory issues and illnesses but that with her seeing an orthopedic doctor for the scoliosis as us being aware that she has scoliosis, hopefully they will be able to control the curve with either the brace or surgery before it gets to that point. He stated that he is concerned about her adrenal glands as her adrenal hyperplasia is not typical and because of the fact that she is having to be on estrogen at this time. He is concerned of other issues that might come up through adolescence but says that we will just watch her for now. His other concern was with her kidneys as she has the left kidney reflux and spastic bladder. He says that we won't know how it will affect her kidneys at this time and that she just needs to keep up with those appointments. He was glad that she is not having to see a nephrologist at this time for any of those issues. He said that her endocrinologist just needs to continue to monitor her adenoma on her pituitary gland as that is the only thing that can be done with these unless they start changing and then decisions have to be made. Hopefully, it will remain unchanged and we will just follow with yearly MRI's.
He stated that the doctor in England (UK) wants some more research for another article that he is going to write. Therefore, he needs lab work as well as a 24 hour urinalysis. We were given the necessary equipment and instructions to get the 24 hour urinalysis and will take care of this a couple of days prior to her next appointment in St. Louis in June. We will collect this and then show up to turn it in and then labs will be drawn and everything will be shipped at once overseas. He will not see her at that time but has agreed to see her once a year now that he is closer to us again. He is an incredible doctor and encouraged me to still keep up via email if there are any issues that might be of concern to him.
Overall, it was a very productive day and it is nice to have a physician close again that can give us information about her syndrome. I do what research I can online but again, not much of the information applies to Darein so I can only use that information to get a worse case scenario of things and a general idea of issues that others have dealt with. We mostly just continue to watch her and enjoy how well she is doing. Her geneticist was very excited to get a good vibe about how good Darein's self esteem is and to know that she is sociable and was nominated for homecoming attendant for her grade.
I called Kansas City on Tuesday and still have not received a call back about her possible stones. I will wait until Monday afternoon and then if I still have not heard any more then I will call and see where we are at on that. I will check on insoles and see about finding a place that can customize some for Darein. If we are still having issues then we will talk further to her pediatrician about what else to do. I still need to call and schedule her a hearing test as we think her hearing isn't as good as it was when she started school. Now that things are starting to calm down a little, I can have a little time hopefully to make these phone calls and set these appointments up and continue moving forward on other issues.
Hope everyone has a great weekend and very thankful that our government has decided not to shut down for now and we are all able to enjoy our National Parks for a little while longer :)

Summary of the Week

I've been posting on Facebook most of the week but don't have much to write about to date, so I thought I would just give a refresher of the week :)
Darein's back has been increasing in pain and her illness to her stomach is getting worse. She missed 3 days last week due to an upset stomach and ultrasound tests. She has been ill at least 1 day a week for the past 7 weeks due to either kidney or gall stones most likely. She has been getting her xrays done here in Springfield and the clinic has been mailing those xrays to Kansas City. It has been taking them a week and a half to receive them which causes it to be that much longer before we can move to the next test. The doctor in Kansas City finally agreed to let us proceed with a pelvic and abdominal ultrasound before he viewed the KUB xray. We had the radiology department make a CD for us and then we directly sent it via FedEx that same day. I called today and found out that Kansas City received the xray finally yesterday afternoon and the ultrasound today. The doctor was out this afternoon and has a full clinic tomorrow so they will try to get him to review the tests and let us know how to proceed by the end of the week, hopefully. I did stress on a phone call earlier in the week that I would like the doctor in Kansas City to perform the surgery to remove the stones if he wants to look at the anatomy of her kidneys for her left kidney reflux and at her spastic bladder. I also stated that if all he was going to do was remove the stones then we would prefer to have that done here in Springfield so that her recovery will be close to home and easier travel wise. So now we wait to see what, if anything will be done and then go from there.
As far as Darein's back goes, she has been anxiously awaiting her orthotic back brace to come in as she is hoping that it will help her pain. I finally received a phone call this morning stating that the orthotic department had to work with the orthopedic doctor appointment so that they could both see her on the same day. They happened to have an opening this Friday and so we will head to St. Louis on Friday to pick up the brace and see the orthopedic doctor.
Darein's geneticist is at Cardinal Glennon Hospital in St. Louis and is wanting to see Darein and get some labs for some further research needed to send to the UK. He has agreed to make a special appointment just to see us since Darein is in town. Darein is a little concerned about having her blood drawn at a hospital other than the usual as they know how hard it is to get blood from her. She wants to make sure that the hospital knows that she is a great finger stick, even for large amounts if possible. I assured her I would pass the message along and we would work through things once we were there and knew more about what was going to take place.
During all of my down time that I have had these past couple of weeks I finally managed to get all of Darein's paperwork taken in to see if she will qualify as disabled and receive the same benefits as a disabled person over the age of 18 or if she will receive at least a minimum of Medicaid with a $800/month deductible when we choose to use it. It will take at least a week or two to get the results. This would help if Shane's insurance caps out due to the increased medical care that she is starting to require. I also am finally filling out Children's Miracle Network paperwork to see if we can get some relief for traveling expenses and maybe help with her back brace and hearing aids that will be needed again in another couple of years. There are only certain days of the week that they are able to help you so need to get information turned in tomorrow in order to get help with her scoliosis issues.
Tomorrow I will spend the day dropping off the CMN paperwork and hopefully an interview as well as calling the doctor's office in St. Louis and asking them to fax the necessary paperwork showing that Darein has an upcoming appointment and her diagnosis, etc. Then, we head to a baseball game where Damein is expected to pitch. Thursday is errand day and so the day will be spent running errands and going to watch another baseball game. We are debating on whether to go to St. Louis Thursday night after the baseball game and staying so that we can already be up there the following morning for all of the appointments. It will be very difficult on us if we decide to wait until the morning of the appointments as we would need to leave by 5 or 5:30am, drive 4 hours to head to two doctor appointments in the morning, eat lunch and find our way over to the other hospital which we have never been to before for another appointment and then driving home 4 hours in order for Shane to be at work the next day. It makes for an extremely long day. Damein takes his ACT test Saturday for one last time to see if it helps improve his score and helps improve any chances for scholarships. In the meantime, we are still trying to find time to take Damein to get his tuxedo for prom and to pick Darein's 4-wheeler up from the repairman. I will definitely be ready for a rest next week but not planning on getting too relaxed until we hear what the plan is for Darein's kidney or gall stones. We may end up taking another trip, this time to Kansas City the very next week in order to get her to feeling better. I am very thankful that God has given me and my family the stamina that he has. Our bodies naturally seem to relax and rest when we need to and we seem to be able to find time for that down time which is very nice. This allows us to go and go for long amounts of time until we get to a place where we can finally crash again :)
Thank you to all of those that have been keeping Darein and our family in your prayers. The road is long and tedious right now but as each day passes it brings us a day closer to the light at the end of the tunnel. Darein is looking forward to going to Florida in July with her Acteen group. Because of her back brace and the care she may require I am going to go with her. We are both looking forward to some downtime and it is nice for sis to have something positive to look forward to.

Thankful For Downtime So That I Can Get Caught Up On Paperwork

Not much has happened since the last time I posted but nonetheless I thought I would give an update. We found out that Darein has either kidney stones or gall stones her urology surgeon believes according to an xray that she had done. Therefore, he wanted her to get another xray in two weeks and then if that comes back showing they are still there then he wants to order an abdominal ultrasound and go from there. Darein just went on Friday and I called and spoke with her pediatrician's office. They are still stating that there are densities still there and will send the films to Kansas City for the urologist to evaluate. We will have to wait at least until the end of this week, if not the beginning of the next week before getting answers saying that we need to proceed with the abdominal ultrasound. Darein has been sick about once a week for about 6 weeks now. Hoping they hurry up and get the necessary tests ordered so that they can get these stones taken care of if that is really what is going on with her. I am guessing that if that is really what is going on with her then she is doing incredibly well only being sick once a week as I would guess that kidney stones and/or gall stones typically make people extremely sick and in a tremendous amount of pain. I think that her steroids probably help mask some of this pain but this girl has some serious pain tolerance and always has too. Hoping they help her soon.
In the meantime, It has been two weeks since Darein went to St. Louis to get measured for her back brace. Anticipating getting a phone call sometime this week stating that we can make an appointment to go back to St. Louis and get her brace.
Me and Shane have also noticed that Darein's hearing isn't what it should be so I will try to find time this week to call her audiologist and set up an appointment for a hearing test so we can figure out if her hearing truly is worse. If it is, then she will see the ENT doctor in the same office and it will be determined if it is just wax build-up or if there is a possibility that the malleus bone prosthesis has fallen once again and surgery will be necessary to fix it.
I have spent our downtime from office visits doing research and paperwork and coming up with new ideas. I have had an appointment with the Division of Social Services to see about getting Darein some Medicaid that would help with out insurance. We make too much money but there is a program where you have a spend down amount that you pay for the month that you decide to use it. If you don't use it that month then you don't have to pay that amount. Unfortunately, our co-pay would be about $800 each month that we decided to use it so will only be able to use it when it is feasible to use. However, it is better than nothing. Lots of paperwork and documentation are needed to turn in and has taken quite a bit of time for me to gather. I have the paperwork finally done this evening and now just need to collect my documentation and make copies of everything. Hopefully, I can get it turned in by next week or the end of this week. I have also called and checked out a few other resources, had some that we don't qualify for and another one that I am waiting for paperwork in the mail so that I can work on completing that application process. I also heard from Darein's geneticist this week and he is willing to see Darein and get some blood work from her when she is in St. Louis next time so that we don't have to make an extra trip. He has offered to see her even if it isn't one of his regular clinic days! What an incredible physician and person this man is, we are so very fortunate to have him in our lives. He is working with the UK to continue their research on Darein as not much is known about her syndrome and they are learning most of what they know through her and a few rare others. Hopefully eventually one day there will be enough information out there about Antley-Bixler syndrome that other families will be helped. Knowledge is such a wonderful thing and I appreciate it more and more all the time as we continue to go through helping Darein so blindly.
As I have done all of this research and searching for organizations that are willing to help some with Darein's medical costs it is becoming increasingly aware to me that there are not any organizations out there that help within the guidelines that we need help with. Therefore, me and Darein have decided to put into action a thought that we have had for quite some time...we are going to try and start a foundation for kids with rare syndromes. I have talked with my sister and my best friend and they are going to join our team and help us with this endeavor. Me and Darein came up with a name and a logo and Darein designed it on the computer and has done a fantastic job. The other teammates are going to help set up the organization, help with legal advice and we are going to start organizing on paper and see if this is going to be something that we can pursue. I therefore will be working on this project in my spare time as well. We are getting very excited about it and have lots and lots of ideas. Unfortunately, we have to take care of the boring stuff first and get all of our ducks in a row before we can proceed but I am very grateful to have family and friends that are good at weeding through the boring stuff so that me and Darein can do more of the creative stuff :)It is nice to have a team that is working towards the same goal as me and Darein. We are hoping to be able to help children with rare syndromes with their medical bills. We have to set up guidelines but do not want financial income restrictions to be placed and instead want to be an organization that looks at the bigger picture and can help people find resources as well as be a resource to help them. Me and Darein are so excited at the vision that we see and can't wait to try and make it come true. Again, we need to figure out the details first to see if it is going to be something that is doable before we venture too much time and effort only to get to a huge roadblock so please be praying for us. I have been praying diligently about this as I know that no matter what a good hearted or great idea it is, it will never work unless it is part of God's plan for our lives so I just ask that you pray that God opens doors for us if this is what we are supposed to do and closes them rapidly if it is not in the cards for us.
In the meantime, I have called the University of Missouri and talked to them somewhat about different scholarships, etc. that Damein might receive for college but basically we just have to wait until we get his packet in the mail. We were given another scholarship site and so Damein will continue to fill out scholarships and we should receive our financial aid packet from the college in the next week or two and will have that to go through and work on. Damein did get us registered for summer orientation and approved for a couple of dates and so we look forward to visiting the campus again in June. He is scheduled to take the ACT one more time in another two weeks and so we are continuing to make progress on his college as well. We have finished Damein's senior pictures and now will pick out what we want and what picture to send in the announcements. I started filling out his announcements today and started going through the list of who to get them sent out to and just need to review and make sure I have addresses and then finish these by the end of the first week of April so that I can mail them out the next week. So much to do to finish his senior year and get him ready for his first year of college...Yikes!!!
I hope that everyone has a blessed week and I am super happy that baseball season is here and enjoying some free time watching my son play his last year of baseball!!

A Day Trip To St. Louis

We started our trip to St. Louis yesterday morning bright and early, 5am. St. Louis is about a 4 hour trip from Springfield and Darein's appointment was at 9am. We were told we could be as late as about 9:30am but to try and be there no later than that. It started snowing about half way there, we ran into many wrecks and slow moving traffic due to the weather conditions. However, we managed to make it to the Children's Hospital shortly after 9:30am. I had paperwork that the orthopedic office e-mailed to me so that I could have it filled out prior to the appointment. There was approximately 10 pages and took about 3 hours to fill out. We took the paperwork and xrays to the appointment and waited to be called back. The doctor finally came in, looked at the xrays, asked questions and had me tell him about Darein's Antley-Bixler syndrome and what it was. He thinks that her scoliosis isn't your typical idiopathic adolescent scoliosis but instead stems from her syndrome and therefore is a little more difficult of a case. Her curves of 32 and 35 degrees is not enough to warrant surgery at this point. He will not perform surgery until it gets into the 50 degrees margin. Therefore, he has recommended that we brace her. There is a 50/50 chance that the brace will help to straighten her spine or at least keep it from getting worse. If we don't brace her then there is a 100% chance that her curves will get worse as she continues to grow. The brace will not help the top curve at all but we are hopeful that it will help or maintain the middle curve which is the curve that if it got too bad could affect her heart or lungs. The brace has to be worn approximately 20 hours a day and is worn under her clothes and covers the entire upper part of her body. We have agreed to go ahead and proceed with the brace at this time as long as the doctor will watch her very closely as I am still concerned that her scoliosis will grow progressively worse rather quickly. There was a doctor there that strictly works with the braces, measurements, etc. We saw him to get measurements so that they can order the cast to fit Darein. He explained that once the cast is ordered it will take approximately 3 - 4 weeks for the cast to come in and we will return to St. Louis to try the cast on, get it fitted and trimmed a little better and learn more about the brace and our responsibility in getting Darein to wear it the correct amount of time. He stated that she should not start out wearing it to school as she will grow uncomfortable with it at first and will want to take it off and on. Therefore, we will work up to the 20 hours that she will need to wear it. It is more helpful if she wears it when she is up and moving around than if she were to wear it at night sleeping. It is easy to clean as it can be wiped down with alcohol swabs or with soap and water as long as it isn't immersed in water. She cannot swim or bathe in it but otherwise can perform daily activities with no issues. Once she has it she will return to St. Louis again in 2 months for an xray to check the progression of her scoliosis and have the brace readjusted as it may become loose as it forms to her body and extra padding will need to be added. The orthopedic doctor wanted to do a hand xray or what we call a bone age to determine how much more growth she still has left. I assured him that her endocrinologist just did one in February and stated that she has about 2 more inches left to grow. He however wanted another one done for his records there and he said after the xray was done that she has at least a year of growth left. The growth is important as her scoliosis has the potential to get worse as long as she is growing. Once she has stopped growing her scoliosis curves should stabilize and will no longer get worse. As long as her curves are not in the 50's at the 2 month visit then the orthopedic doctor will follow her every 4 months in St. Louis and continue to check her closely. If she is not getting worse then he may extend it to visits every 6 months.
Overall, the visit went well though we are all a little apprehensive as to if this will work or not and if it is worth the expense and discomfort to only get started in the bracing process and find that her curves have significantly gotten worse and surgery will have to be the next step. Yet, we understand that we have to start somewhere and this seems to be the most reasonable place to start. Therefore, we will proceed with cautious optimism.

It's The American Way

I love our country, I really do but I find myself wondering what we are doing sometimes as nothing seems to make sense. I was in a wreck almost a month ago. I don't want to get into details as I am still dealing with the insurance company but is it so hard to take care of a person's expenses that they incurred as a result of a wreck that your client caused? Just cover my expenses and my vehicle and we can call it done. Why must there be so much aggravation over a few things that will end up costing the company more money in the long run versus if they just took care of what was right and just.
As if this wasn't enough for one's aggravation, I decided to try and file for disability for Darein. She is facing a $500,000 surgery on her spine, surgery on her jaw, nose and other medical expenses and eventually a person's insurance is going to cap out and nothing helps no matter how much you make. Darein was not able to be diagnosed until the age of 10. Therefore, trying to file for disability up to that point was not an option and trying to file after that was still difficult as she has such a rare syndrome and not much of a prognosis as far as what to expect. Therefore, we did the right and just thing by taking care of the bills and expenses ourselves and my husband worked hard, has good insurance and tries to provide for our family to the best of his ability. I am unable to work as I have had to quit to take care of Darein and help her through her many medical issues. So when it has come to a time when we need to have resources to turn to, you would think you could turn to disability. However, that is not the case. We were told today that my husband makes too much money and it doesn't matter how much the medical bills are we still make too much to qualify for those services. We need to go through the process though in order to get a denial letter prior to applying for further resources. So basically, if you don't work, sit on your butt and maybe even decide to consciously choose to be a single parent then you can get all kinds of services. However, if you go to work, try to make a decent living for your family while also trying to balance your children's needs then the government doesn't want to help those who are trying to help themselves. It is just so infuriating and therefore, I call it the American Way. So now it looks as though I get to spend my "free" time trying to round up resources that might help with my daughter's surgeries and medical bills as well as dealing with whatever goes on between me and the insurance company. I would just like to spend time trying to care for my kids. Darein has many medical issues and I want to focus on her and not on acquiring resources to help our family financially with our medical circumstances. I also have a son to concentrate on enjoying his senior year and helping him make the transition to college and taking care of all that that involves. It's too bad that there are so many people as well as companies always trying to get ahead instead of worrying about the common honest people.
After going through all that I have gone through this past week or two, I think I will end up spending the rest of my life lobbying to our Congressmen and Representatives trying to get equal rights for those children who have disabilities. I find it funny that if you are an adult and disabled, then you are granted disability no matter what the income is. However, if you are a child that is disabled then your parents are supposed to be responsible for the astronomical costs of medical care no matter how much you make. It seems as though those that don't work and try to work the system are granted things that should instead go towards hard working individuals who have no control over the circumstances of their disabled child. I am mad that I have to lower my standards in order to get the help that is rightly deserved to my child. I should be able to hold my high standards that working hard and providing for your family is of the utmost importance and will reap great rewards as a value that I teach my children and that they can look at and see great results from. However, it seems as though this day and age you have to lower your standards and figure out how to work the system in order to get rewarded and I am very concerned about the values that this is teaching my children. I will still continue to hold fast to my old fashioned values no matter the outcome but I am definitely concerned about the current and future nature of our United States of America. Makes me understand a little why China is now the new superpower. You would think that we would get a clue somewhere but instead we just seem to continue in the same footsteps as prior that continue to not work.
I am done now with that part of my story and ready to move on now that I have said my peace. I received a call today from Kansas City stating that there appears to be kidney or gall stones that showed up on Darein's xray. We will repeat an xray in two weeks and then if they are still there then we will proceed with an abdominal ultrasound and decide what needs to be done from there.
From here we press forward and sorry for the not so uplifting note today but I do get very frustrated with things that are socially acceptable this day and age. I will continue to hold fast to my values and do what I think is morally right for me and my family no matter the consequences.

Trying To Figure Things Out

Well, as most of you that keep up with me on Facebook know by now Darein was not accepted to the Shriners Hospital in St. Louis. They do not have an ICU and the anesthesiologist and team of experts at that hospital felt that Darein had too many other medical issues to feel comfortable accepting her in case there were difficulties during or after surgery that would require extra care. The same surgeons do perform the surgery however at the Children's Hospital in St. Louis and therefore we were referred over there. However, when I called they told me that her curves by themselves were not significant enough for their doctors to see her but if I had her orthopedic doctor here in town send records they would review them and they might accept her based on how rapid her curves had progressed. I called to request these records be sent. However, the nurse was out that day and so I had to wait until yesterday before being able to speak with her. After speaking with the nurse here in town, she said that she would make a phone call to the doctor's office in St. Louis as sometimes they were more likely to accept patients if they spoke with the doctor's office and could get more information. Therefore, she will be making the phone call and faxing over records this week. In the meantime, she gave me more xrays to take with me when we go. I was concerned about the amount of time that we would have to wait prior to surgery being done and how it would affect her lungs. I was assured that we had time though she told me that this surgery would not totally correct Darein's curves in her spine. She said that they straighten it the best that they can with the rib bones and then place the rods to keep it from progressing. If they were to do surgery at the degrees of 32 and 35 that they are at now, they could probably get her spine pretty straight but she was unable to tell me if they would try to get it done now before it got worse or if they would want to wait until it got worse before proceeding. We will have to wait until we go for our consult appointment to find this out.
After finding this information out I looked the surgery up online and found that it can cost as must as $500,000.00 for this surgery and if it is performed in kids there is a good chance that the rods will need to be replaced as they tend to deteriorate over time. I will be checking that article against other articles in the days to come to verify the information that I read but sounds a little overwhelming as of now. According to the article I read it also said that she would be disabled once this surgery was performed. I'm guessing its because she will always have back pain from here on out.
With the expense of this surgery, the possibility of having to replace the rods later on, braces on her teeth, jaw surgery and nose surgery as well as possible kidney/bladder surgery we feel as though we have taken care of her medical bills the best that we could up to this point and are ready to start figuring out what resources might be available to us. I called the disability office today but most likely she will not qualify as we make too much money. However, it is important for us to go ahead through the process as there is a slight chance they might approve her anyways based on the severity of her disability and if not then I was told that sometimes in order to qualify for other resources a denial letter is required from the disability department. Therefore, we will pursue this avenue and see where it leads us. I was also given the names of a few other organizations that we are pursuing as well. It is very frustrating that she did not qualify at birth for disability due to the fact that we had no diagnosis and therefore no prognosis for how well she would do. Then once she was diagnosed at the age of 10, still not likely she would be accepted as the condition was so rare and so little was known and therefore unable to decide if it would keep her from being able to hold a job later in life or not. Now, that she might qualify as we know a little more about the syndrome and now that she has scoliosis which is debilitating she most likely still won't qualify because we make too much. This kind of thing makes it very frustrating trying to get help knowing that we are trying to make a good income for our family and take care of our kids the best that we can but yet there are people out there who have chosen just not to work and to let the government take care of them and they qualify for all kinds of services. So now, as if worrying about your sick kid isn't enough we get to jump through hoops and fill out paperwork in our "spare" time to try to get some relief from past medical bills as well as future higher cost medical bills.
I try to make some sort of a positive note on my blogs so for my positive note today I just have to say that I have the most incredible friends and family imaginable. I would not be able to get through all that I have without God, of course nor my family and friends! My sister has offered to hold a fundraiser for Darein. We have asked her to wait until we go for the consult so that we have a good understanding of what the plan will be before deciding to let her proceed. I also have received many phone calls from family and friends over the past few days offering support, knowledge and someone to talk to. I had to tell Darein tonight that there was a good chance that she would miss out on her Blume Acteens trip to Florida this summer that she was looking forward to as well as a mission trip to St. Louis with her youth group. She was devastated as she really wanted to participate in these events and has never rode on a plane and wanted to ride on a plane this summer. We promised her that when she was able we would take her on a trip and let her ride on a plane :) She seemed to be feeling a little better after that but is starting to understand the magnitude of what is about to happen and how it might limit her. She wants to be a Vet Tech when she graduates and so I talked to her about the fact that she can still try to achieve that but may just have to work part time or do volunteer work as she is able so that she gets to still do something that she loves and yet still take care of herself. She also loves to do art work and paint so we talked about the fact that she will be able to do that in her spare time as well. She will continue to work towards her goals in life and we will continue to support and help her reach her goals but with limitations and guidelines that will work for her. Her sleep study did come back normal in the preliminary results and so that is one hurdle that we have overcome through everything else. We will still continue to push forward and work everyday towards accomplishing goals whether it is catching up on rest, getting the house cleaned and organized so that I can focus on caring for her after her surgery, filling out paperwork, attending appointments or whatever else may come up. I did call her urologist's office today to check on the results of her xray we had done a few weeks ago and the nurse was out so I will hear something tomorrow or next week as to where we are at on that issue.
For every few steps we take forward it seems as though we take even more back. However, with all of the steps back it allows us to learn more than if we only move forward and therefore I am as grateful for the steps back as I am for the steps forward and will continue to hold fast to the fact that God will deliver us and see us through each trial and we will continue to come out with a stronger character than we started with.