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 :)
Wednesday, June 29, 2011
Tuesday, June 21, 2011
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!!!
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!!!
Wednesday, June 1, 2011
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.
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.
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