What an incredibly busy February we have started off with!! I'm not really sure where to start. February may have been fairly mild with its weather but it has been a little rude to start off the new year!
Darein started the month off going to St. Louis. We are told each and every 4 months that we go that no xrays will be needed for the next visit as the surgeon likes to keep xrays as limited as possible. However, Darein has managed to need one every single time when we show up. We started off our visit by forgetting the original xrays for him to compare the other xrays to. The surgeon's assistant reviewed the xrays from the last visit and wrote 38 degrees on it. The previous visit in June had shown 35 degrees. We were told in October that there was minimal to no change. However, it appeared that there was a 3 degree change in October. The prosthetic back brace doctor came in and reviewed the xray and then both walked out. Darein's surgeon finally came in, looked at the xray and stated that with the change he saw on the xray we should have another one done with and without the brace. We were running late for Darein's genetics appointment (her geneticist was coming in on his day off to see her) so I made a phone call and let his office know that we were running quite a bit late. We were told just to call before we left and it would be fine, he would see us. Darein got her xray and then we returned to see what the results were. We were called back to the surgeon's office and told that it was now at 42 degrees without the back brace. We are to go back in 4 months and if it is 45 degrees or greater then he has to start considering surgery on her. He told us that a lot of parents ask, "if surgery was inevitable then was it a waste of time and money to have the back brace put on?". He stated that no it isn't as it at the very least helps to prolong the time before surgery is necessary and time is essential when the bones are still growing. Needless to say, we are very disheartened to hear this news as we were hoping for NO surgery. There is also a possibility that Darein will have to wear the back brace for an additional 4 months from the time that she goes back to see the surgeon which would leave her in it another summer. The brace is wearing on her nerves as she cannot wear jeans (only pants or pajama jeans) or do much exercise or bending in the brace. She is doing very well though and wearing it during school, taking it off when she gets home and putting it back on at bedtime.
We went to see Darein's geneticist after the surgeon appointment and visited for quite some time. I asked about several concerns and was told that we have enough on our plate for now without adding to it. Glad to know that a doctor knows when enough is enough for awhile as well :) He gave us the research paper from Darein's last research study and I was told that not much was discovered, was just kind of a baseline study. He also gave me parent paperwork as well as doctor paperwork for a new research study he was asked to pass along to us. England now wants to do a study about how and if certain medications work in kids with Antley-Bixler syndrome and how these medications react with their systems. Darein has to be off of certain medications for a period of time though so we have to work with the endocrinologist to see if it is safe and if he wants her to participate in this or not. I have read through the new study information and already sent questions back to her geneticist for further review on some things but have not had the time to sit and read about the study that was done last time. We were told though that Darein is not the oldest patient with Antley-Bixler as previously thought. Her geneticist did not have the information readily available but was thinking the oldest was around 23 or 24. As Darein gets older as well as other children with Antley-Bixler, it becomes increasingly important to figure out what new challenges they might face through adolescence as well as young adults medically. It is also important to figure out how safe the steroids are for long time use as well as if there will ever come a point and time when they are no longer needed. Part of Darein's pituitary gland as well as other important glands such as her adrenal glands do not function properly and as we were told by her endocrinologist, "we just have to treat each symptom as they appear. There is no cure or preventive measures at this time".
We also put my grandparents in a nursing home this month. This was the hardest thing that I have ever endured outside of Darein's medical issues. My grandmother has Alzheimer's and my grandfather's health is failing. I went to visit with them this month and am planning another trip hopefully in the next week or so. I have never lost anyone close to me and I am extremely close with my grandparents. This has been an especially emotional drain on me. They live in Oklahoma so it isn't like I can visit them every day or on any kind of regular basis. On the bright side, the home is very nice and they finally got my grandma into a room with my grandpa. They have lots of activities for them to participate in and considering the state of their health, it is a very nice place for them to live.
We have started braces on Darein's teeth this month as well. Her first appointment consisted of getting 4 spacers placed for two weeks. One of them fell out that was on a shallow tooth the first day so we made an appointment to go back the following week to have it replaced. It made it two days before falling out for a second time. Today we went back and had the spacers removed, impressions made and 6 new spacers placed. We were told that 2 of them might fall out and if they did, just to wait until the week before we go back for the braces to come in and have the spacers replaced. We also found out that Darein has to have a palate expansion along with her braces. We did a palate expansion with headgear and a retainer once the expansion was out when she was 7 or 8 I think. We were told at the age of 10 - 12 by her now plastic surgeon in St. Louis that it was a waste of time to continue with orthodontics as there was the possibility that it wouldn't hold and we could end up spending a lot of money on orthodontics before she was really ready for all of that. Thankfully, we stopped and did not proceed further. So now, here we are again back to square 1 of needing a palate expansion. At least now she is ready for it but she is going to be in quite a bit of pain for awhile I am afraid. She has very sensitive teeth and with the 6 spacers on tonight she was already complaining of how much just the rubber bands were hurting. We took her out after her appointment for pasta and soup. Tonight though, she made a bowl of cheerios for a snack and couldn't eat it because of the pain. I had her take some Ibuprofen and an extra steroid pill so that she could sleep tonight and hopefully wake up in not such terrible pain in the morning. She gets extra steroids when she is sick or in a lot of pain as her body does not produce the extra cortisol needed like it does in me and you when we are in pain or sick.
Damein is still doing well in college though he is finding it to be quite difficult. He has some hard classes but is keeping his head above water for now. My husband asked him this past weekend if he had decided to change his major and he said not yet. He is in Calculus 1 this semester and got a 85 on his test the other day which should help his grade some. He did tell us that for his Chemical Engineering grade he has to go through Calculus 4 he thought. Hopefully, he will get a good base and really start to understand it by next semester so that he can continue to move forward with his degree. I know that we will be happy no matter what he decides for a degree though as long as he is happy and content with his path.
March should be a fairly mellow month as Darein is on Spring Break next week and Damein will be on Spring Break in 3 weeks. We will mostly consume our time getting Darein adjusted to her braces and getting them placed as well as visiting with my grandparents. We are helping with my husband's mom and aunt as much as possible as they have had their share of health issues as well. My husband will change hours again starting next week for the next 4 months so we will be adjusting to his new schedule as well. Our winter has been mild without any snow really to speak of but I have to say I am more than a little apprehensive about the upcoming Spring as we are already showing lots of signs of more tornadoes than normal. I have started a 10 day cleanse though and only have 2 days left and then will start with my new diet program. I have started to do Winsor Pilates and just have to stick with everything. Consistency is always a problem for me, so will be working on that as part of my New Years resolution to take a little bit of time out for improving my health and overall well being.
I hope everyone's New Year has started off a little better than mine but if not, just remember there is still 10 months for things to improve or 10 months until a New Year ;)
Tuesday, March 6, 2012
Wednesday, February 1, 2012
2012 Is Proving To Be a Busy Year for Darein
What a year 2012 is proving to be!!! To top it off, Darein just looked over my shoulder as I opened my blog to start writing and said, "YOU NEED TO WRITE A BOOK"! She is growing frustrated with me as she is still trying to encourage me to write a book, start a foundation or do something positive with her illness that will be helpful to others :)I feel her frustration as well but don't think the timing is quite right yet.
In the meantime, we have been very busy! We had some extended family members who have had some health issues come up that we have been trying to help with, our truck decided to start acting up and we have been in the process of trying to find a reliable vehicle and have now purchased said vehicle. I have also been trying to keep my New Years resolutions and so far the only one that I have been able to keep is going to church every Sunday unless something out of my control comes up that would prevent that. However, I think that is probably the most important resolution that I needed to keep so figure I'm not doing too bad :) I booked Darein 3 orthodontic appointments every 2 weeks to get braces on her teeth. She will start this process in 3 weeks. She will wear her braces for about 1 1/2 years and then will proceed with her facial plastic surgery. We are excited to be moving forward but I know that the closer it gets, the more nervous I will become as the plastic surgery is a huge risk. This surgery will do amazing things for Darein as far as her breathing, her headaches and her looks but the risk of going under, the pain of having the jawbones broken and overall risks of surgery will weigh heavily on our mind as it gets closer. For now, we are choosing to be excited and positive and trying not to think about the future and just focusing on the braces part of it to keep our emotions in check.
Darein goes to St. Louis on Monday for a check-up of her scoliosis. We are hoping for no change and for the possibility of getting her back brace off in 4 months with no surgery necessary at this time. While we are in St. Louis on Monday Darein will also see her genetics physician. He is coming in on his day off to see her so that we don't have to make an extra trip. He will just give her a yearly overall check up and answer any questions and/or concerns we might have at this time as far as Antley-Bixler syndrome goes. He will also hopefully have some answers for us as to any new findings that the England research doctor may have found or new information from the research done on her blood.
Darein has not been going to the first two swimming lessons with her Champion Athletes as she has been extremely busy working on her Valentine Banquet at church and has wanted to sleep in on Saturdays as it is the only day she has to sleep in and catch up on some rest. We are finally at a point though, where she will start this Saturday and learn to swim a little better and be able to participate in a Swim Meet. She isn't looking forward to this but I think that it is important for her to learn this skill and will be good for her. She has also taken some time off from volunteering at the zoo as she has been so worn out. We are both excited to get started back on her working there. She has been very busy but I have been very proud of her for knowing when she needs to take a break and not being afraid to speak up about that and let us know.
Our weather has been phenomenal for this time of year and we are enjoying while we can as I am sure that it will bring a rough Spring. Hope everyone is having a great 2012 so far!!
In the meantime, we have been very busy! We had some extended family members who have had some health issues come up that we have been trying to help with, our truck decided to start acting up and we have been in the process of trying to find a reliable vehicle and have now purchased said vehicle. I have also been trying to keep my New Years resolutions and so far the only one that I have been able to keep is going to church every Sunday unless something out of my control comes up that would prevent that. However, I think that is probably the most important resolution that I needed to keep so figure I'm not doing too bad :) I booked Darein 3 orthodontic appointments every 2 weeks to get braces on her teeth. She will start this process in 3 weeks. She will wear her braces for about 1 1/2 years and then will proceed with her facial plastic surgery. We are excited to be moving forward but I know that the closer it gets, the more nervous I will become as the plastic surgery is a huge risk. This surgery will do amazing things for Darein as far as her breathing, her headaches and her looks but the risk of going under, the pain of having the jawbones broken and overall risks of surgery will weigh heavily on our mind as it gets closer. For now, we are choosing to be excited and positive and trying not to think about the future and just focusing on the braces part of it to keep our emotions in check.
Darein goes to St. Louis on Monday for a check-up of her scoliosis. We are hoping for no change and for the possibility of getting her back brace off in 4 months with no surgery necessary at this time. While we are in St. Louis on Monday Darein will also see her genetics physician. He is coming in on his day off to see her so that we don't have to make an extra trip. He will just give her a yearly overall check up and answer any questions and/or concerns we might have at this time as far as Antley-Bixler syndrome goes. He will also hopefully have some answers for us as to any new findings that the England research doctor may have found or new information from the research done on her blood.
Darein has not been going to the first two swimming lessons with her Champion Athletes as she has been extremely busy working on her Valentine Banquet at church and has wanted to sleep in on Saturdays as it is the only day she has to sleep in and catch up on some rest. We are finally at a point though, where she will start this Saturday and learn to swim a little better and be able to participate in a Swim Meet. She isn't looking forward to this but I think that it is important for her to learn this skill and will be good for her. She has also taken some time off from volunteering at the zoo as she has been so worn out. We are both excited to get started back on her working there. She has been very busy but I have been very proud of her for knowing when she needs to take a break and not being afraid to speak up about that and let us know.
Our weather has been phenomenal for this time of year and we are enjoying while we can as I am sure that it will bring a rough Spring. Hope everyone is having a great 2012 so far!!
Wednesday, January 11, 2012
With A New Year Come New Challenges
Happy New Year everyone!! I hope everyone had a great Christmas :)
It has been wonderful having my son home for the holidays. He heads back to school tomorrow to start his initiation process to become an active member of his fraternity house and then school officially starts back on the 17th. Damein is enjoying the University of Missouri very much and we are extremely proud of him. He has been invited to attend a Leadership Conference in St. Louis later in the month and we look forward to many new opportunities for him this semester.
Darein has been doing extremely well this winter so far! We are so excited at how well she has done as she is usually sick a lot from October through March. She did not volunteer at the zoo during the month of December as she took some time to catch up on some rest and spend some time with her grandparents. We are ready to get back into the swing of things though starting this month and what a month it has already turned into. She had her Christmas party at the zoo the first Saturday of the month. She had a great time and received some neat items from the zoo. She has already started working on the annual church Valentine banquet. She has started back to her Art Club on Wednesdays at school and has been doing great things in that club. She loves her art so much and is learning a lot. Her guinea pig was her FFA project but unfortunately she passed away in December. She has started taking her chihuahua to puppy lessons on Tuesday nights and I am hoping she decides to make Daisy her new FFA project. Daisy is doing a great job being trained and is a very good dog for our family. We love her so much and have had her about a year now.
Darein will go to see her endocrinologist next week for a check up and we expect a short visit with a good report as she has been doing great. Darein was afraid that she was going to have to have a cysto-urethrogram this year for her left kidney reflux and was extremely upset over the possibility of having this test. It is very traumatic for her and it was more than she could bear to even think of having to have it. I called her urologist in Kansas City and was told that she would not need to have that test done this year. They want her to get an ultrasound and an xray and then see the doctor afterwards so we will do that later this summer in Kansas City. Darein, me and her father are ecstatic to say the least that she does not have to have that test. She has been through so much from day 1 and it is hard to see your child dread a test so bad that is required.
I have decided to volunteer on Thursdays with my parents at the Grand Oaks Mission, which is a ministry of the Baptist Association for the needy. My parents have been volunteering for a few months and have really enjoyed it and asked me to consider it. I feel like this will be a good thing for me to do with my parents and am looking forward to it. I've been wanting to do something like this for some time but haven't found anything that I really felt strongly about, this was the answer to my prayers. We make weekly visits to our hometown to visit with my mother-in-law, try to check in throughout the month on my parents and my husband's aunt. I am so very thankful right now that I am able to stay at home. I know I've said this many times but sometimes you realize just how important it is to stay at home more than at other times. Its hard when people ask you what you do and you tell them you are a stay at home mom and then they ask you how old your children are and you tell them one is in college and the other one is 16. You wouldn't believe the looks I get, the long pauses, etc. Is what they don't realize, is that we are a very close family both with my side of the family and with my husband's side of the family. You see, it took a village to raise our children. Without my parents, my brother and sister, my mother-in-law and my husband's aunt, close friends and of course God my children would not have turned into the incredible children they are today. Every one of these people helped us take care of Damein while me and Shane would run to Columbia, St. Louis or Kansas City with Darein for doctor visits and hospitalizations. Damein never attended a baseball game or practice without someone close being there to watch him and cheer him on and report every detail back to us on anything we missed. Every one of these people helped us with Darein by watching her when we needed a break, needed a place to leave her while we participated in events going on with Damein, etc. Every one of these people still continue to help us as we still have needs arise that cannot place us at two places at once. Our parents are now aging and need us to be there for them now as they have always been there for us. So, though I am a stay at home mom I am also a stay at home child, here and available to repay the favor to these great people who raised us and helped us raise our kids. I cannot think of a greater way to spend my time.
I know our lives are busy and I know they get hectic and I know that we get overwhelmed but it is extremely important to count our blessings in the midst of all that is going on. I find that I get overwhelmed when I look at my calendar for the month and I start trying to find a place to add an appointment and then start thinking of another appointment that I am going to need to make. These are the times that I have to take a deep breath, focus on today, talk to my husband who is great to remind me to start counting my blessings and then start counting my blessings. God is great and will not give you more than you can handle. When I think I have no control over my life and it is stressing me out, I just remember that I am exactly right...God has control over my life and if I just turn it over to him and let him carry the burden I don't need to worry because he will make my life way more wonderful than I ever could. I have started trying to work out some, eat better, read my Bible daily, listen to my Joyce Meyer podcast and just overall have a richer and fuller life. I have yet to accomplish each and every one of these things every single day but I try to accomplish what I can and turn the rest over to Jesus and ask him for a better day the next day.
I hope everyone has a wonderful 2012 full of rich blessings! However, please know that challenges will come and its not a matter of if they will come or not but how we will handle ourselves in the midst of them. My grandparents health is failing rapidly and I dread the day they will no longer be with us. Darein will be going through an incredible amount of changes this year as she will be getting braces, possibly new hearing aids, being in her back brace until at least May with a couple of more appointments with her orthopedic doctor, appointments with her geneticist, urologist, and plastic surgeon. She is also still very involved with volunteering at the zoo, being in Art Club,involved in her church and those extra curricular activities, learning to play several musical instruments in her free time and learning new sports with her Champion Athletes group as well as taking on teaching her puppy obedience in puppy lessons. She has never been this busy and yet she is meeting all of these challenges head on and winning!! It may be too much, but it helps her stamina and pushes her to do as much as she can and teaches her about learning her limitations as well. If she can be involved in so much and meeting these challenges so well then surely I can too :)
It has been wonderful having my son home for the holidays. He heads back to school tomorrow to start his initiation process to become an active member of his fraternity house and then school officially starts back on the 17th. Damein is enjoying the University of Missouri very much and we are extremely proud of him. He has been invited to attend a Leadership Conference in St. Louis later in the month and we look forward to many new opportunities for him this semester.
Darein has been doing extremely well this winter so far! We are so excited at how well she has done as she is usually sick a lot from October through March. She did not volunteer at the zoo during the month of December as she took some time to catch up on some rest and spend some time with her grandparents. We are ready to get back into the swing of things though starting this month and what a month it has already turned into. She had her Christmas party at the zoo the first Saturday of the month. She had a great time and received some neat items from the zoo. She has already started working on the annual church Valentine banquet. She has started back to her Art Club on Wednesdays at school and has been doing great things in that club. She loves her art so much and is learning a lot. Her guinea pig was her FFA project but unfortunately she passed away in December. She has started taking her chihuahua to puppy lessons on Tuesday nights and I am hoping she decides to make Daisy her new FFA project. Daisy is doing a great job being trained and is a very good dog for our family. We love her so much and have had her about a year now.
Darein will go to see her endocrinologist next week for a check up and we expect a short visit with a good report as she has been doing great. Darein was afraid that she was going to have to have a cysto-urethrogram this year for her left kidney reflux and was extremely upset over the possibility of having this test. It is very traumatic for her and it was more than she could bear to even think of having to have it. I called her urologist in Kansas City and was told that she would not need to have that test done this year. They want her to get an ultrasound and an xray and then see the doctor afterwards so we will do that later this summer in Kansas City. Darein, me and her father are ecstatic to say the least that she does not have to have that test. She has been through so much from day 1 and it is hard to see your child dread a test so bad that is required.
I have decided to volunteer on Thursdays with my parents at the Grand Oaks Mission, which is a ministry of the Baptist Association for the needy. My parents have been volunteering for a few months and have really enjoyed it and asked me to consider it. I feel like this will be a good thing for me to do with my parents and am looking forward to it. I've been wanting to do something like this for some time but haven't found anything that I really felt strongly about, this was the answer to my prayers. We make weekly visits to our hometown to visit with my mother-in-law, try to check in throughout the month on my parents and my husband's aunt. I am so very thankful right now that I am able to stay at home. I know I've said this many times but sometimes you realize just how important it is to stay at home more than at other times. Its hard when people ask you what you do and you tell them you are a stay at home mom and then they ask you how old your children are and you tell them one is in college and the other one is 16. You wouldn't believe the looks I get, the long pauses, etc. Is what they don't realize, is that we are a very close family both with my side of the family and with my husband's side of the family. You see, it took a village to raise our children. Without my parents, my brother and sister, my mother-in-law and my husband's aunt, close friends and of course God my children would not have turned into the incredible children they are today. Every one of these people helped us take care of Damein while me and Shane would run to Columbia, St. Louis or Kansas City with Darein for doctor visits and hospitalizations. Damein never attended a baseball game or practice without someone close being there to watch him and cheer him on and report every detail back to us on anything we missed. Every one of these people helped us with Darein by watching her when we needed a break, needed a place to leave her while we participated in events going on with Damein, etc. Every one of these people still continue to help us as we still have needs arise that cannot place us at two places at once. Our parents are now aging and need us to be there for them now as they have always been there for us. So, though I am a stay at home mom I am also a stay at home child, here and available to repay the favor to these great people who raised us and helped us raise our kids. I cannot think of a greater way to spend my time.
I know our lives are busy and I know they get hectic and I know that we get overwhelmed but it is extremely important to count our blessings in the midst of all that is going on. I find that I get overwhelmed when I look at my calendar for the month and I start trying to find a place to add an appointment and then start thinking of another appointment that I am going to need to make. These are the times that I have to take a deep breath, focus on today, talk to my husband who is great to remind me to start counting my blessings and then start counting my blessings. God is great and will not give you more than you can handle. When I think I have no control over my life and it is stressing me out, I just remember that I am exactly right...God has control over my life and if I just turn it over to him and let him carry the burden I don't need to worry because he will make my life way more wonderful than I ever could. I have started trying to work out some, eat better, read my Bible daily, listen to my Joyce Meyer podcast and just overall have a richer and fuller life. I have yet to accomplish each and every one of these things every single day but I try to accomplish what I can and turn the rest over to Jesus and ask him for a better day the next day.
I hope everyone has a wonderful 2012 full of rich blessings! However, please know that challenges will come and its not a matter of if they will come or not but how we will handle ourselves in the midst of them. My grandparents health is failing rapidly and I dread the day they will no longer be with us. Darein will be going through an incredible amount of changes this year as she will be getting braces, possibly new hearing aids, being in her back brace until at least May with a couple of more appointments with her orthopedic doctor, appointments with her geneticist, urologist, and plastic surgeon. She is also still very involved with volunteering at the zoo, being in Art Club,involved in her church and those extra curricular activities, learning to play several musical instruments in her free time and learning new sports with her Champion Athletes group as well as taking on teaching her puppy obedience in puppy lessons. She has never been this busy and yet she is meeting all of these challenges head on and winning!! It may be too much, but it helps her stamina and pushes her to do as much as she can and teaches her about learning her limitations as well. If she can be involved in so much and meeting these challenges so well then surely I can too :)
Wednesday, November 30, 2011
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 :)
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 :)
Thursday, November 3, 2011
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 :)
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 :)
Monday, October 3, 2011
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 :)
Wednesday, September 7, 2011
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 :)
Subscribe to:
Posts (Atom)
