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!!!

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 :)

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!!