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

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!!!

July...The Heart of Summer

July was an incredible month and one of our busier months of summer. Darein started back with her Champion Athletes of the Ozarks group by starting back to bowling. She enjoys this program very much and is able to participate in it with one of her cousins. This organization is great to help Darein get the physical activity that she needs in a fun way that she looks forward to. It helps with her motor skills as well as social skills and teaches her a lot. She bowled once a week on Friday nights for about 6 weeks. This was just a fun event to get her back in the mode of bowling. During the next bowling event she will get to participate in tournaments to help teach her about competition and help her strive to do her best. Towards the middle of the month we had our Wilson Family Reunion which is held every 2 years. This year it was held in Branson. We had such a great time getting to know everyone, reconnecting with family we don't get to see regularly and connecting our kids to their cousins and family members that they might otherwise not get to meet. It was great to be able to not only visit but also be able to look at old pictures and see everyone's family...past and present. We will definitely be trying to go to more of these in the future. We also used this time in Branson to take a mini vacation with our family and my sister's family down at the lake. We stayed right on the lake and just hung out in the water every day and visited in the evening on the back deck. It was nice having all of us together. My son misses out now on a lot of family things with him being in college and with wanting to do things with his friends so it was nice to have him with us enjoying some real family time. This month, I joined a group that a friend of mine just started called We Are One. We meet on Monday nights and it is a group for women who want to learn more about being balanced in mind, body and spirit. It helps us to realize that even though we are only one person, we are one person that can make the difference in others lives. This has been great for me as I have been searching for something bigger than myself and a way to help others outside of my family. I do a lot for my family as well as my extended family and that is great but I think it is very important to reach out to others outside of our families and make a difference and this is a great outlet for that. I made a resolution at the beginning of the year and finally realized the importance of taking care of myself. I used to believe that as a mom I needed to take care of everyone else other than me and maybe if I had time to take care of myself then I would try to fit it in. I think that a lot of moms feel the same way. However, if we don't take care of ourselves then we can't possibly take care of our loved ones. This group helps keep me accountable for making sure that I am taking time out for myself throughout the week. It took me a long time to learn this concept so it is nice to have that reinforcement. Darein worked a lot at the zoo this month in order to try and get her volunteer hours in so that she could go to the Henry Doorly Zoo in Omaha, Nebraska at the end of the month. She has been so busy with church activities, Champion Athletes, doctor appointments, etc that it has been tough for her to work as much as she needed to at the zoo. She accomplished getting her hours in and was then rewarded at the end of the month by getting to go to the zoo in Nebraska. She had a great time and got to see some behind the scenes areas as well as went on the Skyfari which flies over parts of the zoo to give an aerial view of the animals. I have been very proud of Darein for staying so busy this summer and keeping all of her commitments. I worry a lot that she is doing too much but she steps up to the plate each and every time. Sometimes, she does get worn out but we just readjust, take a little time off and then get her back on track. I think doing so much also helps build up her stamina so that she is stronger for the school year and keeps up with life a little better. We got to go meet Dr. Temple Grandin this month also and she talked about "stretching" your special needs child. I hope that I am doing this with Darein. Its tough to know how much to "stretch" them but I believe its just trial and error. I like to "stretch" her as much as possible and yet watch closely for when I need to give her some down time. Down time for her is as much a struggle as "stretching" can be as she really enjoys going as much and as often as possible. She doesn't like having to miss out on anything but as she is more and more active she is starting to understand that sometimes she needs to look at the bigger picture and pick a day to take off. We had to do that tonight, explaining to her what was coming up tomorrow night as well as Saturday and explained to her that tonight's activity was a last minute thing and not something that she had been looking forward to so it was probably best to miss this one. She agreed and went to bed very early so it was a good decision and she made the decision on her own which means progress to me. I also ran across an Antley-Bixler Syndrome support group on Facebook. I have had an incredible time getting to know some of the moms and learning so incredibly much. I am on information overload and I've only personally talked to one mother in length on the phone. I have had an opportunity to talk to another mother shortly and another mother via messaging as well as am in the process of talking to someone who actually has ABS. I am so incredibly excited to be a part of this group and know that it is going to be a huge blessing to me and my family and I hope that we can in turn be a huge blessing to many on the site as well. I just can't explain the feeling of knowing that there are other kids out there that have suffered through some of the same things that you and your child and family have suffered through by yourselves. There are only about 90-100 cases of ABS so it isn't something like autism where there are a large number of cases and awareness and resources to connect with. Most of us have had to go through this blindly by ourselves with no real answers of what to expect or how to even make decisions on health issues. Now, we all have someone that we can talk to, ask advice from and get personal experiences to draw from so that then we can actually make an educated decision about the care of our children and what pitfalls to look out for as well as things to look forward to and to give us hope. Darein will eventually get to meet some of these children and their families as we try to work on get togethers. This group will become a big part of our life now and we look forward to this new chapter!! I hope everyone has had an eventful summer and enjoyed their children this summer. I am working on getting me and my family healthy and helping others get healthy as well. So I am now part of a company called Genesis PURE. I won't get into that on here but that was my little plug ;) If you are interested just message me! Have a great school year and I'll write again next month!!

Summer is Definitely Here...June

June turned out to be an incredibly busy month full of blessings...my cup truly runs over!!! Darein started the month with her feet on the run right off the bat. She was able to participate in a Cope Leadership Course with her Venture Crew from the Dickerson Park Zoo for a day where she participated in many things such as a tight rope course and all kinds of other activities. She then got to go to the National Tiger Sanctuary in Saddlebrooke, MO where she was able to view tigers that had been rescued and were there to live out the rest of their lives. We then went to St. Louis to see her orthopedic surgeon and see what the verdict was as far as her back brace and scoliosis went. We were told that she could have the back brace off for the next four months as she had had it on for about a year and it appears as though she is done growing. There was no change in the past 4 months as far as the curvature of her spine. She is still only about 3 degrees away from needing to consider having back surgery but at this point the back brace was not making a difference. She was told that she would come back in October for a check up and at that time we would either consider surgery, possibly go back into the brace for a period of time or continue with periodic check ups and no brace depending on how she progressed. With it being so hot over the summer, she is thrilled to get at least a break from this brace. We were then told as my husband went to see a new physician that there was a possibility that he had Crohn's disease. We were told that his red blood cells were dying off too soon and not enough were replacing them so they wanted to do more testing. We spent the month getting labs done to try to find out if he had this terrible disease. Darein then participated in Vacation Bible School at her church for a week and enjoyed working in Arts and Crafts with kids of all ages. She was told at the end of May that she would be ready for jaw surgery next summer. So the week of Vacation Bible School she went to see her orthodontist and get his opinion about whether or not we should have the top jaw only done or the top and bottom. He suggested that we go ahead and do both and explained that the risks were minimal. He told us at that time that her palate expander was done and so we no longer needed to turn it and it would just stay in her mouth for a couple of months until the bones had healed around it and her palate was stable. Once it is stable then she will have it removed and only have the braces on! He then set her up an appointment with an oral surgeon here in Springfield to see about getting her wisdom teeth pulled. Darein went to that appointment and we were told that the roots of her wisdom teeth were not long enough yet and would make it very difficult to remove these teeth at this time. We explained that it was suggested to us that it be done 6 months prior to jaw surgery and that we were able to wait until Christmas time to have the surgery done. The surgeon said that this would be much better as the roots would have time to grow some and it would make removing the teeth easier as they would be still and not rolling around. We are to call when it gets closer to time and schedule. Because she will need her steroids via IV at a stress dose level she will have to have the surgery done in a surgery center where there is an anesthesiologist on staff to monitor her more closely. She will need to be on these steroids orally a few days prior to surgery and a several days following surgery and there is the possibility that the surgery will be a little more difficult on her than on most other people having their wisdom teeth pulled. It was during this month that I was introduced to GenesisPure by my sister. I have decided to become a consultant for this company after seeing the benefits of it for myself and my husband. As we were awaiting results to find out if my husband had Crohn's disease this product came into my life. I have working on getting healthier but wanted something that was safe for my entire family including Darein as well as something that wasn't a huge diet change right off the bat. I couldn't make that many changes in things all at once and expect my family to follow suit. After a week or two of taking this product, my husband passed his DOT physical with flying colors, started feeling better and I started feeling better as well as started losing weight. We love the product and I love being a part of this company and look forward to getting some long term results from this. That same week, Darein went to a mission trip in Joplin where she was able to help people that were not involved in the tornado destruction. She had a wonderful time painting and doing some yard work as well as helping a lady grocery shop. The news teams did a big story on the World Changers as a whole being there and the fact that people were so appreciative of all the work they did as no one had come in to help people that needed help but were not a part of the tornado destruction. There was a lady in Darein's group from Arkansas that took to Darein and helped to look after her. She also told the youth leader that she really felt that God brought her and Darein together as she was not supposed to originally be on that trip. Darein touched that lady's life in a way we may never know and God gave Darein an angel that week to look over her :) On that Thursday we picked Darein up at the church they were staying at and took her to Kansas City for an appointment with her urologist to check on her left kidney reflux. He told us on Friday that since she has had no recent infections and seems to be doing well we could take her off of her antibiotic and would only need to see him if she started having troubles again!! We finished the month off by finding out that my husband does not have Crohn's disease and instead it is a congenital or inherited blood disorder but nothing serious. He is being referred to a hematologist to get a definitive diagnosis so we know if there are any medicines he should avoid, etc. We are incredibly thankful he does not have Crohn's disease, cancer or any other serious health issue. Darein also had a week off to enjoy as she chose before starting this week to get ready for church camp at Baptist Hill for 4 days. She is looking forward to this! Hard to believe summer is already almost over! Been enjoying having Damein home for the summer and he has been doing his own thing but I've got to see him quite a bit while he has been home. I'm looking forward to a quieter month next month and some quiet time somewhat. I hope you all are enjoying your summer and will write again next month!!

May: A Month of Celebration

May was quite a month full of celebrations. We celebrated my best friend's birthday, my birthday, my sister's birthday and my parent's anniversary. The kids were glad to be out of school and the end of the year events that went along with getting ready to be out of school. Shane took some vacation time to help do some work at his aunt's house and to be with me for my birthday and mother's day as well as to help move Damein home from college for the summer. Damein got his first summer job umpiring baseball games for kids 12-under. He is enjoying it though he is just getting started. Darein spent the end of May enjoying some free time before she has a busy June. Here towards the end of May her summer has already started to pick up though and proving to turn into quite a summer. She is easing back into her Venture Crew time at the zoo by attending a few activities and going to her monthly meetings. She has been doing good with her braces, though they are at the point where they are starting to become uncomfortable due to the expander pushing her teeth out towards her cheeks and causing some rubbing that is bothersome. We went to St. Louis to see her plastic surgeon this month and was told that she will most likely be ready for her jaw surgery next summer. Both jaws are turned and twisted in opposite directions. If we only have her top jaw done then her top teeth will be aligned with her midface but the bottom teeth would still remain off. It was suggested that we talk with her orthodontist as to if it was worth the risk or not to have the bottom jaw done. We talked about the fact that Darein would need to have her wisdom teeth taken out prior to the surgery so they wouldn't be in the way. We then talked about the fact that Darein wants to have her nose surgery. We were told that she could have that done at any time and were asked when we wanted to have that done. We told him we thought we would wait until after the jaw surgery as we were afraid she might have to have back surgery. He told us that her back surgery was priority so to get that figured out first and then she could have her nose surgery whenever she wanted. We talked some about how her midface would look when he was done and he explained that she still would not look like me or Shane. He said that he could put cheek implants in at any point if she decided that she wanted to have that done. We are concerned that she will not be ready for back surgery this summer and that she will still need it but that they won't be ready to do it until next summer. If that is the case, then we will have to go back to the plastic surgeon and ask how to proceed. Her braces are on and have to stay on until after the surgery so not sure what would happen or how it would work out. Her plastic surgeon wants her to get a nasendoscopy about 6 months prior to her surgery. They will be looking to make sure there is no bubbling of the palate. This procedure entails them placing a thin tube down her nose with a camera on the end and asking her to talk so they can look at what they need to in that passage area. She has had this twice before when she was little and absolutely hates it. She gets hysterical trying to have it done and it is very traumatizing for her so we are not looking forward to this at all. Evidently, sometimes the palate expander can weaken the soft tissue in the roof of her palate and if this is the case then she would not be able to have the jaw surgery. Just one more piece of the puzzle to figure out :). When she is about 6 months away from being ready for surgery her orthodontist will take some impressions and xrays and send them to the plastic surgeon in St. Louis for his team to review and to start the insurance approval process. We are told she will only be in the hospital for 3-5 days, some patients may end up being in there for as long as 7 days but that is rare. We are supposed to start working on pureeing some foods and letting her try some Ensure and Boost and just try to see what she likes and doesn't like. Her jaw will not be wired shut after the surgery like we originally thought but will have rubber bands at the back of the top jaw and will be attached to the front of the bottom jaw to help keep the jaw pulled forward until it is healed. She will have screws that attach the jaws and will not be able to move her mouth much or feel like moving her mouth much for a little while after the surgery. She should start feeling comfortable within a couple of weeks and hopefully recovery will go good from there though I've been told it can take as long as a year to fully heal. Her nutrition after the surgery will be very important as she will need plenty of protein and that will be difficult with her not being able to eat meat. They will dismiss her with a strict diet of the nutrients she needs and we will be responsible for getting that nutrition to her. Since she has congenital virilizing adrenal hyperplasia she will need IV cortisol during surgery and will also need extra doses following surgery until she is healed. The cortisol is an important hormone that your body makes extra of during times of stress or illness and since she does not make the required amount it will be very important that we get the stress dosing to her body so she will be dealing with that along with the surgery itself. We have decided that once we see her orthopedic surgeon on Monday and get the information from him as far as his plan for Darein and her back then we will start making other medical decisions as to how we proceed on things. We are considering getting done whatever can be done this summer to help spread surgeries out a little bit for her. Our goals for this summer would be to get her wisdom teeth out, go ahead and get her nose surgery done and then get her hearing appointment made and order her new hearing aids. However, by this stage of the game we know all things can and do change at any given moment so we have to be able to roll with the punches and adjust, adjust, adjust to all things! She has VBS, a mission trip, a kidney appointment, volunteer time at the zoo as well as she wants to do some golfing with her Champion Athletes of the Ozarks this summer and a family reunion so the appointments, surgeries, etc. will all have to be carefully orchestrated and all things considered into the bigger picture. Unfortunately, considering a summer where we actually don't have a real vacation planned in the hopes of enjoying some free time for lazing about, going to the lake, etc. I think we are going to be quite busy ;) I'm trying very hard to keep up with my blog and everyone on my social networks but if it seems as though I have been a little distracted lately its probably because I have. I know I have just been liking everyones status' and not commenting much for the past 6 months but now you kind of know why. Yes, this stuff has only come up this month but these things have weighed heavily on my mind for awhile now as it draws closer and as we continue to get bad news about Darein's back. I have enjoyed everyone's summer pictures and it looks like most of you have already started your summer vacations....I am enjoying them greatly and appreciate any and all prayers for Darein. She is handling things fairly well but is getting scared about the jaw surgery now and wants to back out of it. It is hard for us to have her go through with it but we feel as though it will be very beneficial to her in the long run. Since the nose surgery is the one thing that she is looking forward to, we are hoping to be able to get that done for her this summer so she has something to look forward to and will hopefully boost her self-esteem as she moves forward in her teenage years. Oh ya....she told us that she wants them to give her a nose just like mine!!! Made me feel good that my daughter is looking to me for her nose :) Take care and God Bless!!

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.

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 ;)

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!!

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 :)