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!!
Tuesday, July 14, 2026
Rude February
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 ;)
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 ;)
March: In like a Lion, Out like a Lamb
March started off a little busy. We spent the first weekend going to Kansas City. The boys received George Strait tickets for Christmas and George got sick and could not perform the last weekend in February so it was rescheduled for the following weekend. Me and Darein decided to go hang out with them and just have a night away from home. The boys got to see the concert and me and Darein stayed and enjoyed the suite. It's kind of nice to stay in a hotel on occasion without a hospital or doctor visit connected to it. Damein turned 19 and so we had a nice birthday weekend with him.
Unfortunately, when we got back Darein went to get her spacers taken out. We weren't sure what to really expect at this appointment. We soon found out that they were removing 4 of her spacers and replacing them with 6 spacers in different areas of her mouth. We were also told that she would be having a palate expander placed. We were not expecting this as she had one when she was very small and thought her palate was expanded appropriately. Evidently however her palate had gone back and was not as wide as it needed to be. Molds were taken of Darein's teeth and we were given a pamphlet that says she will have the palate expander in for about 4-6 months along with her braces.
We watched my mom and dad's dog while they were gone this month. She is a very cute and well behaved dog so we enjoyed having her. Darein was on Spring Break for a week this month and worked at the zoo 2 days, took her dog to puppy lessons and attended church activities. It was nice for her to catch up on some much needed rest though she still kept herself plenty busy.
I had my first chiropractor appointment this month and loved it. My neck and shoulders and upper back were extremely tight as I carry the bulk of my stress there. He was able to fix this and I went back one other time this month and felt even better. I think I will go a couple of times a month to stay aligned!
Later this month Damein came home for Spring Break! It was nice to have him home and I was glad he chose to spend time with us instead of going to Panama City, FL with the majority of his fraternity house. He ended up having strep throat and we were able to get him in to the doctor and get him some antibiotics before he headed back to school! He talked to me about changing his degree from Chemical Engineering to being a Pharmacist. I told him I would be happy with this change if he chose to do it. He decided to talk to his advisor when he got back to school and was told that he would need to major in BioChem. He changed his degree and signed up for the Fall Semester. He is doing well and will be taking Chemistry 3, Calculus 2 and Biology. His dad wants him to take an easy elective class to add to his hours so he may add one other class. He did well on his mid-terms so we are hoping he continues to do well but mostly that he is happy and enjoying the journey of getting where he hopes to go.
Darein finally got her braces and palate expander placed before the end of the month. They did not turn the palate expander on as they are going to give her a month to get used to her braces and having the expander in her mouth. She started out rough having a great deal of soreness and difficulty eating. After a few days though she is able to eat most things she wants though it is very time consuming. We got her a waterpik to help with brushing her teeth but she brushes several times a day and after about a week of it, she is growing weary of the maintenance and hassle of eating. Hopefully over time these things will become second nature to her.
Darein's chihuahua, Daisy graduated from Intermediate classes this month. We have decided to proceed with Advanced lessons. Once she is done with this 6 week class she can take a citizenship test which will open many doors for her including allowing her to proceed with further lessons to become a therapy dog. We will take each step as we can but Darein's goal is that Daisy will become a therapy dog so that she can be with Darein when she is in the hospital or just alert us if something isn't right with Darein.
April looks much calmer with not much going on, we will enjoy the break. Sorry, this post reads a bit narrated. It was an extremely busy month and I haven't had much time to really digest life right now.
Unfortunately, when we got back Darein went to get her spacers taken out. We weren't sure what to really expect at this appointment. We soon found out that they were removing 4 of her spacers and replacing them with 6 spacers in different areas of her mouth. We were also told that she would be having a palate expander placed. We were not expecting this as she had one when she was very small and thought her palate was expanded appropriately. Evidently however her palate had gone back and was not as wide as it needed to be. Molds were taken of Darein's teeth and we were given a pamphlet that says she will have the palate expander in for about 4-6 months along with her braces.
We watched my mom and dad's dog while they were gone this month. She is a very cute and well behaved dog so we enjoyed having her. Darein was on Spring Break for a week this month and worked at the zoo 2 days, took her dog to puppy lessons and attended church activities. It was nice for her to catch up on some much needed rest though she still kept herself plenty busy.
I had my first chiropractor appointment this month and loved it. My neck and shoulders and upper back were extremely tight as I carry the bulk of my stress there. He was able to fix this and I went back one other time this month and felt even better. I think I will go a couple of times a month to stay aligned!
Later this month Damein came home for Spring Break! It was nice to have him home and I was glad he chose to spend time with us instead of going to Panama City, FL with the majority of his fraternity house. He ended up having strep throat and we were able to get him in to the doctor and get him some antibiotics before he headed back to school! He talked to me about changing his degree from Chemical Engineering to being a Pharmacist. I told him I would be happy with this change if he chose to do it. He decided to talk to his advisor when he got back to school and was told that he would need to major in BioChem. He changed his degree and signed up for the Fall Semester. He is doing well and will be taking Chemistry 3, Calculus 2 and Biology. His dad wants him to take an easy elective class to add to his hours so he may add one other class. He did well on his mid-terms so we are hoping he continues to do well but mostly that he is happy and enjoying the journey of getting where he hopes to go.
Darein finally got her braces and palate expander placed before the end of the month. They did not turn the palate expander on as they are going to give her a month to get used to her braces and having the expander in her mouth. She started out rough having a great deal of soreness and difficulty eating. After a few days though she is able to eat most things she wants though it is very time consuming. We got her a waterpik to help with brushing her teeth but she brushes several times a day and after about a week of it, she is growing weary of the maintenance and hassle of eating. Hopefully over time these things will become second nature to her.
Darein's chihuahua, Daisy graduated from Intermediate classes this month. We have decided to proceed with Advanced lessons. Once she is done with this 6 week class she can take a citizenship test which will open many doors for her including allowing her to proceed with further lessons to become a therapy dog. We will take each step as we can but Darein's goal is that Daisy will become a therapy dog so that she can be with Darein when she is in the hospital or just alert us if something isn't right with Darein.
April looks much calmer with not much going on, we will enjoy the break. Sorry, this post reads a bit narrated. It was an extremely busy month and I haven't had much time to really digest life right now.
It's Been A Long, Long Time...
It's been awhile since I've had a chance to blog! A lot has changed in my life over the past few months. I won't get into that here on my blog as I have dedicated this blog strictly to Darein and life revolving around her.
She has been doing incredibly well over the past few months! She has straight A's for the first time in school :) As most of you know, me and Darein have been desperately wanting to start a Foundation of sorts to get exposure about Antley-Bixler syndrome as well as to help other families just finding out their child has this. However, I was struggling with how to get it off the ground and make it work and hadn't made connections yet with other families with this syndrome. For those of you that know me well though know I wasn't about to give up and know that I'm always researching and keeping my eyes and ears open. I finally made that important connection by coming across a Facebook page called Antley-Bixler Syndrome Support Page. I connected with the two founders of that page and have made more connections with other family members who have children with ABS. As several of us have talked we found we all had a common ground of wanting to raise awareness about this syndrome and so one of the mothers made a connection and got the website started. It will go online January 1, 2013. I will have my own e-mail for the site so that families and physicians can contact me for information as well as other parents. Me and Darein are very excited about this new venture and the good that can come from this!
Darein is still busy bowling with Champion Athletes of the Ozarks and got to golf recently as well for the first time. She really enjoyed golfing and can't wait to learn more! She is also keeping busy with the Venture Crew at the Dickerson Park Zoo. She is getting information about a Veterinary Technician program at Crowder College and has about decided that she wants to attend college there. Attending college at Crowder would mean she needs to learn how to drive and would be on her own away in a dorm. Both of these things make me and her both a little nervous but we have decided to overcome our fears and push forward to help her achieve her dreams. She will check into a Driver's Education program this summer and work on taking more responsibility about things. I have to learn to hold back a little and let her learn some things on her own. This will be more difficult on me than her I have a feeling :)
We got good news at Darein's orthopedic surgery appointment. Her curve was 1 degree less at only 41 degrees and therefore she doesn't have to go back in the brace and she doesn't need to be seen now for a year! Her endocrinology appointment has gone well also. Mainly we have to work on getting her weight down so we will start working on that more. We are pressing forward on her jaw surgery now. She got her palate expander out this month and she will have her wisdom teeth out and get a nasendoscopy to check and make sure her palate is strong enough to endure the surgery. Those things will be done in December or January as we are planning that she will be ready for surgery next summer. Orthodontics and plastic surgery will be her main appointments over the next few months as we get prepared.
Damein is doing well in college and seems to be settling in this year. We are very proud of him and all the progress he is making. My husband is working hard as always and we all are doing well. I will try not to wait so long next time to write....hope you all have a safe and Happy Halloween!!!
She has been doing incredibly well over the past few months! She has straight A's for the first time in school :) As most of you know, me and Darein have been desperately wanting to start a Foundation of sorts to get exposure about Antley-Bixler syndrome as well as to help other families just finding out their child has this. However, I was struggling with how to get it off the ground and make it work and hadn't made connections yet with other families with this syndrome. For those of you that know me well though know I wasn't about to give up and know that I'm always researching and keeping my eyes and ears open. I finally made that important connection by coming across a Facebook page called Antley-Bixler Syndrome Support Page. I connected with the two founders of that page and have made more connections with other family members who have children with ABS. As several of us have talked we found we all had a common ground of wanting to raise awareness about this syndrome and so one of the mothers made a connection and got the website started. It will go online January 1, 2013. I will have my own e-mail for the site so that families and physicians can contact me for information as well as other parents. Me and Darein are very excited about this new venture and the good that can come from this!
Darein is still busy bowling with Champion Athletes of the Ozarks and got to golf recently as well for the first time. She really enjoyed golfing and can't wait to learn more! She is also keeping busy with the Venture Crew at the Dickerson Park Zoo. She is getting information about a Veterinary Technician program at Crowder College and has about decided that she wants to attend college there. Attending college at Crowder would mean she needs to learn how to drive and would be on her own away in a dorm. Both of these things make me and her both a little nervous but we have decided to overcome our fears and push forward to help her achieve her dreams. She will check into a Driver's Education program this summer and work on taking more responsibility about things. I have to learn to hold back a little and let her learn some things on her own. This will be more difficult on me than her I have a feeling :)
We got good news at Darein's orthopedic surgery appointment. Her curve was 1 degree less at only 41 degrees and therefore she doesn't have to go back in the brace and she doesn't need to be seen now for a year! Her endocrinology appointment has gone well also. Mainly we have to work on getting her weight down so we will start working on that more. We are pressing forward on her jaw surgery now. She got her palate expander out this month and she will have her wisdom teeth out and get a nasendoscopy to check and make sure her palate is strong enough to endure the surgery. Those things will be done in December or January as we are planning that she will be ready for surgery next summer. Orthodontics and plastic surgery will be her main appointments over the next few months as we get prepared.
Damein is doing well in college and seems to be settling in this year. We are very proud of him and all the progress he is making. My husband is working hard as always and we all are doing well. I will try not to wait so long next time to write....hope you all have a safe and Happy Halloween!!!
Senior Year
I have not blogged in quite some time. However, as my daughter gets ready to begin her senior year I thought I would dedicate a post to her.
We were told when she was born not to bring her back to the hospital because there was nothing they could do for her. We were told as she reached the age of a toddler that she might not live to start kindergarten. Against all odds, she did start kindergarten. Not only did she start kindergarten she will be finishing high school this year! She has persevered & taught me more than I could have ever imagined.
Her speech therapists all were very impressed at how well she compensated for her speech problems despite structural abnormalities. She made sure she was understood & worked very hard.
Her physical therapists were all very impressed at how well she could accomplish the tasks she needed to despite any physical limitations.
She surprised us as parents as well as her teachers when we would get complaints in her grades & concerns that she wasn't learning the material needed & out of the blue she would prove us all wrong over & over again by showing us that she did understand the material, she just processed it differently than we did.
She has taught me to have faith, hope and perseverance. She has taught me to believe in the impossible.
She has been a pioneer for others with Antley-Bixler syndrome as well as doctors as she has allowed medical doctors to do research on her so that they might learn more about her syndrome so others don't have to go through what she has been through and to allow others to know what to expect & look for with this syndrome. This has meant being used as a pin cushion at times, allowing students to assist in her medical care for their education & just allowing the doctors to do whatever was necessary to care for her & to educate others.
I cried the day she was born not knowing what we could expect from her life & being scared about the unexpected. I know this year when she graduates I will be crying because she has beaten all odds!!
You can't learn the life lessons she has taught us by education. I've never known anyone in my lifetime that has stayed as true to themselves as this young lady. She pays no attention to what others might say about her or how they might treat her. She treats others kindly & with respect no matter what. She doesn't involve herself in teenage drama & instead is quiet & only observes the behavior of others. If you know her well, you can detect in her facial expressions when she is concerned by someone's behavior, upset by their behavior or clearly thinks the person has no clue. You can detect if she's bored. However, if you say something positive or funny she will definitely respond with a smile or a good amount of laughter. She will also let you know very loudly when you have gone too far & made her mad :)
If only we as a society would learn to accomplish what she has done her whole life.....listen with BOTH ears, keep our mouths SHUT unless necessary, ALWAYS showed compassion to others & knew the value of "if you can't say something nice, keep your mouth shut".
Don't get me wrong, we as parents & her brother as well have taught her a few things ourselves & I don't know that I will ever stop being scared every time a new medical issue arises with her but to quote Joyce Meyer ~ "We may not be where we need to be but at least we're not where we used to be".
I hope everyone has a great school year & learns some life lessons from their children while their children are learning how to live life :)
Wednesday, August 27, 2014
New Beginnings
Wow, it's been a long time since I have blogged!!! My sister reminded me the other morning about my blog by asking me which one I used & made me think maybe I should start it back up. Please forgive me as I try to start again on this.
Darein is now in her 2nd week of college and doing well though she is really having to work hard and because she works at a slower pace than most it takes her a little longer to complete the tasks required of her. That being said, she is doing homework every day and getting it done before her next class period and learned to email her teacher about questions today. She may be making friends with tutors soon but is holding her own for now. She is attending 9 hrs this semester which isn't full time but is a pace she can handle this semester considering one of her classes is a block class & only lasts until October and then she picks up another block class that goes from October until December. On top of starting college she has decided to help a single mom out by babysitting her 2 yr. old and her 8 yr old after he gets out of school for a reduced rate.
This allows Darein to learn to be more assertive and to learn to take care of others needs which are life lessons I can't teach her but she can learn through this experience and she gets to help someone out at the same time. This is a lot for her to handle but so far she is doing great with it! I am very pleased that she has people in her life outside of her family teaching her to push herself as much as she can :) She has started golf once a week with her Champion Athletes group & this is one of her favorite sports so she is enjoying it!
Darein got new hearing aids and is liking them very much! These are the first hearing aids that she has had that go inside of her ear instead of having a mold that is molded to her ear and she likes them much better. Her hearing is normal in her right ear and still declined in her left ear but the prosthesis has fallen so we will go back in 6 months and check her hearing again. If it's the same then we will discuss surgery to get a new prostheses placed which we are hoping will make her left ear hearing normal as well.
Darein had jaw surgery to pull her top jaw forward, a nose surgery to build her a bridge to her nose and is doing well after each of those surgeries. She is now in her retainer and will have it for a year or two I think and is doing well with it. She goes back next October for a recheck on her scoliosis so we have over a year to wait on that which is a nice break.
Damein has started back to his college at MU for his senior year! He has a full schedule of 17 hrs as well as a paid internship where he visits a gentleman who is on home health and he goes in & cooks him lunch and cleans for him. He also is involved in an unpaid internship where she works on the psychology unit at MU Therapy visiting with a mentally ill patient. He told his dad today that he got beat in ping pong by his patient! Lol He also has to sign up to volunteer to work with animals for one of his classes this semester. I know he will do well and I love the caring heart he has and the determination he has to graduate in May & to achieve his life dreams helping others!!
Now that my children are grown and pursuing their life's dreams I am thankful that we were able to lead a life showing compassion for others and the importance of dedicating your life to helping others so that now my children know the importance of this and are following in those footsteps no matter the path life may lead them!!!
Wednesday, December 26, 2012
2012 Coming to a Close
I have to say that I am incredibly ready for 2012 to come to a close!! It has been a rough year to say the least! We lost Shane's mom in November which is why I haven't written in awhile. We were all very close and miss her greatly!! We have been in the process of moving from Fair Grove to Clever as we have inherited her home here in Clever where Shane grew up. Though it is nice to be in his home town and close to other family members it is extremely tough to be in her home. Darein is going to transfer to Clever schools which she is not looking forward to at all!! We were fortunate to be able to wait until the end of the semester and starting her in January. Damein unfortunately had a rough last semester trying to finish his semester of college and yet still grieving the loss of his grandmother who he was very close to.
Darein will be getting her wisdom teeth taken out on the 28th. As always, this is a big procedure as she will be put out for this and given extra cortef the day before, IV cortef the day of surgery and extra cortef for 3 days afterwards. She also will be getting xrays the day before getting her wisdom teeth out by her orthodontist as we are preparing for her jaw surgery. She will go next month for another consultation with her plastic surgeon in regards to her jaw surgery to make sure we are on track and to officially schedule the surgery. Hard to tell at this point, if we have made the right decision or if we should have declined at this time. However, we are far enough along now that we have no choice but to proceed so we are just trying to press forward. So many things to do such as turning information in to the insurance department to try and get her braces paid for under medical versus under orthodontic care. We will see how all of this goes.
Damein is still trying to figure out what he wants to major in and trying to just get through school as he grieves his loss. We are trying to figure out how to move in and adjust with our loss as well. So many things to figure out and try to figure out how to move forward. I know we will get there but for now time seems to stand still.
I will write more after the first of the year but hope this finds everyone having had a Merry Christmas and looking forward to a New Year!!
Sorry so short but been a rough year and still very hard to write!!
Love to all,
Gayla
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