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!!

September 2011 Leads To Many New Beginnings

It has been a month of many new beginnings and a month of things coming to a close. We had a great time at Damein's Parent Weekend at the University of Missouri! Shane got to see the fraternity house for the first time and we both got to see a Division 1 college football game for the first time :) That weekend started the first of a series of lots of times in hotel rooms this month. I honestly never thought I would be tired of staying in a hotel. However, I can honestly say I don't care if I ever stay in another hotel again, though I know it won't be my last :) Darein was started on some progesterone this month along with her estrogen as her pituitary gland is not producing these hormones. There are several things that the pituitary gland controls such as human growth hormone, thyroid-stimulating hormone, follicle stimulating hormone, prolactin, ACTH as well as a few others. Her endocrinologist believes that the fact that her pituitary gland does not function as it is supposed to is because of her Antley-Bixler syndrome. We knew that her adrenal glands do not function properly because of the Antley-Bixler syndrome but are now finding out that it has affected her pituitary gland as well. There is nothing we can do to prevent further issues and just need to address issues as they come up. Her endocrinologist will continue to monitor her hormone levels and make adjustments as necessary. On a more positive note, we received good news today in St. Louis from her orthopedic surgeon. There has been no changes to her spine. Her curvatures are still at 32 degrees for the top curve and 35 degrees for the thoracic curve. She has had the back brace on now for 6 months. He will see her back in 4 months with no xray and then if things still look good he will check on her 4 months from that check up with an xray and as long as no changes she can come out of the brace at that time as she will be done growing. I am sure we will have follow up appointments to keep an eye on it but at least she can be done with the brace :) He gave us the okay to go ahead and start her braces on her teeth whenever we wanted and so I will check with her orthodontist this week and see if we want to go ahead and proceed or if we we want to wait until after the first of the year. Once we start the braces on her teeth we will start the 1 1/2 - 2 year process of preparing her for plastic surgery to adjust her jaw and then the second surgery consisting of a rhinoplasty. That being said, things always pop up and change and have to be adjusted so we will start with first things first. Darein started bowling this weekend for Champion Athletes of the Ozarks. I am very excited for this opportunity for her!! It is a free program for kids and adults with disabilities. Darein is not much for sports but her doctors as well as us as a family want her to be active in a way that she will have fun and be doing something great for herself as well. Through this program she gets to bowl during this season as well as attend some tournaments where she will compete against others at her skill level to help her to earn a medal for these events. They also do special events with them such as going to the Shepherd of the Hills Christmas Show in Branson and decorating a float and riding on it in the Springfield Christmas Parade. She also has the option to participate in Ice Skating, Golf, Basketball, Softball, Swimming, etc. My sister participates in a 5K run for her husband's cousin to help raise money for a program called Hippotherapy which is a program where kids with special needs get to ride a horse and they have an occupational therapist who works with the kids and horses to help the kids develop motor skills, confidence, etc. Since Darein loves horses so much I am going to check into this further and see if this might be a program that would be of benefit to Darein as well. Hopefully, if all works out she could start next Spring. She has been very active with Art Club every Wednesday after school, FFA, football games and church activities. I went to one support group meeting but haven't had that Saturday free again to attend again or to be able to get really involved with it. Hopefully, I will get a chance to start back soon. With the schedule in my house changing so much it is always hard to find your rhythm at first but I know as we try new things and work them in with the old we will figure out a schedule eventually that seems to work. I think it is important to take advantage of new opportunities as they present themselves and then start prioritizing things as we see what we want to stick with, what we don't like or what doesn't fit into our lifestyle and then come up with the best possible fit. Sometimes, it's just a matter of putting things on a back burner for awhile as well until we need a change and then we can make that adjustment. I'm loving the Fall weather and all of the many beautiful trees as they change colors and the new warm smells that Fall bring here in Missouri. Hope everyone's enjoying their new seasons and finding the things in their life that need to be put away and bringing out some new changes for the new season :)

It's That Time of Year Again

Today was the first day that I could really tell that it's that time of the year again!!! I spent several hours on the phone as well on the computer in regards to Darein's health. It seems as though she always ends up with a lot going on this time of year. My posts from here on out will be a little more limited as Darein is getting older and I need to use a little more caution on what I post. She is a teenager now and I need to respect her privacy a little more on some issues than I have had to in the past. That being said, we have moved her Endocrinology appointment up from January to this month due to some issues. She is doing fine but we have some questions that need answered and her physician needs to get some answers on his end as well so that we know how to proceed. I got her a test scheduled for Friday, got her pre-registered and then she will see Endocrinology on the 21st to go over results. We still have a lab that needs to be done as well and so hopefully we can get this done this weekend prior to her appointment. I sent two emails to two of her doctors about issues. I feel very fortunate to have doctors for her that are so easily accessible. Her school is also wonderful and I am able to email one of her resource teachers about issues that come up. I find this to be very helpful for me to keep issues private and yet allow the people in her school to know things on an as needed basis. Darein will head back to St. Louis in October for a recheck on her scoliosis. Hopefully, we will get some good answers over the next few weeks. Damein is doing well in college and seems to be adjusting well. He is scheduled to stay there this weekend though as me and Shane are heading to Branson to celebrate our 20th Anniversary. Hopefully, by being there this weekend he will get a little more adjusted to college life. We have a busy next couple of weekends as we will be attending Parents' Weekend at MU and attend our first college football game with Damein and then Heritage Days will be here the weekend of mine and Shane's Anniversary and Darein will be active with her FFA club that weekend. Darein has joined Art Club and had a great time today after school helping to paint a mural in one of the classrooms. It is September now so it is time to fill out her application for the Venture Crew at the Dickerson Park Zoo in hopes that she is selected to be a volunteer. Between Art Club, FFA, church activities and possibly a volunteer program at the zoo she is going to be very busy this year. The challenge will be helping her to balance all of her extra-curricular activities along with her studies and still making sure that she gets plenty of rest. She doesn't participate in sports but is wanting to join Champion Athletes for kids with special needs. This organization would allow her to participate in physical activities that she otherwise would not be able to participate in due to ability as well as amount of time she could commit to a sport. She needs a physical and so when she goes later this month, we will get that paperwork and then allow her to participate as she is able. Each year that goes by presents its own set of challenges and adventures. I have joined our Family Reunion Committee and have been busy helping to plan for our reunion next year, this is a new first for me and has helped keep me busy. I thought things might slow down now with Damein gone but it seems just as busy as always and there is plenty to do. It seems as though I have found some new interests to keep me busy between the new activities Darein continues to be a part of, the Reunion Committee, keeping on eye on things from a distance as far as my son is concerned so that I can make sure he is keeping his priorities right while at college and joining a support group for parents of kids with special needs. I hope everyone enjoys the weather as we head into Fall!! We are loving it and just trying to fight off colds and stay healthy, hope you all are doing the same :)