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 :)