A Little Nervous About the Unexpected :)

Had a great weekend with my family! I went with Shane's mom and aunt on Friday to Seneca to gamble. I came back with all of my money plus a little which is always a nice feeling. Shane ended up not having to go in on Saturday which is a rarity and so he took a day of vacation. They didn't have enough runs for him to go so he took a day of vacation so he could get paid for it. The kids spent the night at Shane's mom's on Friday night. They left and was home for about 15 minutes before heading to church where they practiced for their Valentine's banquet coming up and then went to an event in Springfield called Youthquake where they had lots of fun with their youth group. That left the day open for Shane and me to hang out a little. We went to breakfast, dropped Darein's 4-wheeler off to be fixed this week and rented a few movies. We spent the evening with the kids once they got home and then worked on the house a little on Sunday. We all slept in, caught up on some rest, made homemade pizzas and the kids went to church this evening. I am working out details for my Vegas trip in March with my sister and best friend. Still waiting on a few final details such as who for sure is going, hoping to wind these up by the end of the week and then proceeding with booking flights and resort. We have no appointments this week so should be a fairly boring week without much going on. Shane is going to his mom's tomorrow to get any groceries or anything else that she needs for the week as a big snow storm is expected to hit on Tuesday. I am going to hang out with Shane's aunt while Shane is hanging out with his mom and help with her printer camera and just visiting with her. Damein is staying after school for a baseball practice and hopefully the roads won't be too slick tomorrow so that everyone gets where we need to be for the day. They are calling for 6 - 12 inches of snow by Tuesday and 1/4" of ice so we went grocery shopping today to get stocked up. Damein is continuing to fill out scholarship applications so hoping we get some good results on financial aid and scholarships soon :)
Darein did go to her endocrinologist last week and we are taking her off of her salt medicine in hopes that she is not a salt loser due to her congenital virilizing adrenal hyperplasia. I think she is good but they drew labs the other day and we will watch that she doesn't start craving salty foods and will recheck labs in two weeks. This could be very dangerous for her if she is a salt loser but we will watch her closely and monitor her diet to see of any changes. Her enodcrinologist also is increasing her estrogen so we will see how she does with this change as well. She seems to be doing well but the estrogen increases her height for now but eventually will make her quit growing. Our goal height for her is 5' so we are hoping to reach this goal without having to place her human growth hormone. This goal should be attainable and we are looking forward to the many changes that she is getting ready to face. As nervous as we all are about the braces and facial surgery and estrogen changes, we are also very positive about the final results and look forward to those positive things that will happen. She is getting ready to face so many changes at a critical time of her life in adolescence but I know that she will handle everything very well as she is extremely confident in the person that she is and not how these things could change her. She has a good head on her shoulders and we look forward to the positives in her life. Will feel better once she has had her two week labs done and we know that she is not a salt loser for sure. Will be on pins and needles until we know for sure, just trying to watch her so closely and her behavior. If she is a salt loser it could be like a diabetic being taken off of their medicine and she could go into a coma so this is a big deal, though we are trying to take things in stride :)
Hope everyone has a wonderful week and enjoy the big snow if you are getting it before Spring gets here, I know we will!!!

Things That Make Me Smile

Sis made me smile lots today :) She came home from school telling us that she dropped her phone in the toilet today during PE while she was changing. I told her that she is going to have to keep her phone in her locker from now on instead of her pocket but she says that she is still scared that there are mice in her locker :) I assured her that the secretary had it cleaned out and she was fine and she needs to use her locker again, not sure how long it will take her to listen to me though!! She was a little upset that she didn't get to see the Governor, Jay Nixon today. He visited her school and she said that he came in a helicopter and had a limo and hundreds of security was there and the school went on lock down. I think she enjoyed all the excitement but said that she missed him when he was going through the halls.
Damein called me when he left school early to head to physical therapy and said thanks alot for scheduling therapy on a day that the governor was going to be there. I told him, I didn't realize he was going to be there until last night but he could have texted me and I would have rescheduled his therapy. Only the Senior A+ students got to see the governor. Therapy is going good for Damein and he works out on his own plus attends baseball practice now for the next 3 weeks and then will check back in with therapy for a couple of sessions to see how things are going. His shoulder is getting strong and he seems to be doing well.
The kids have been doing really well over the past few days and I am so proud of them! They are getting ready for their Valentine's Banquet that the youth group puts on every year and we can't wait to attend the big event!
Hope everyone's week is going well! I don't have a lot that has been going on so that is all I have for today but will write again soon :)

New Beginnings

Things are starting to take shape with the new adventures the kids are facing and I am so excited for them! We filed our taxes Friday which was step 1 in getting things moving forward this new year. I also filed Damein's FAFSA which was step 2.
Damein's youth leader's wife visited with me on Sunday about taking the youth up to MU one day to visit the Student Baptist Union so the kids can check it out and have something positive to be involved in, especially if they choose a big college like MU which is great! Damein got his picture taken today for the Baseball Preview, they took a picture of the Seniors so he is getting excited about that. He goes to physical therapy tomorrow and we spoke with his therapist last week and looks like she will come up with a plan for him to work with her twice a week getting him ready for baseball, will allow him to come in the other 3 days a week and work out on his own and work out with his baseball team with certain restrictions until he graduates with no restrictions. Hopefully this will allow him to be fully ready by baseball season since it is his left shoulder and not his throwing right shoulder. He just has to be careful when he bats and trying not to dive for a ball right now. We need to pick out a picture this week for Damein's yearbook and he needs to pick a picture for his Senior Spotlight and write his Senior Spotlight for the school newspaper. Once that is done then we pick out a picture for his graduation announcements plus whatever we want for exchanges and grandparents, etc. We finish paying for his announcements, cap and gown, yearbook, spring dual credit college classes and acceptance fee to MU in the next two weeks.
Darein goes Wednesday for her endocrinology check up, he will probably order labs for her so hopefully if he does that goes smoothly. We will set Darein up for her braces in about a week or so and get her molds and xrays and then she will get her braces put on two weeks after that appointment.
I will also be finalizing airflight and resort stay for my Las Vegas trip in March with my sister and best friend! So excited and hoping that everything works out, will know for sure once the flight and resort have been finalized.
All of this takes us to the first week of February. February will bring more things to look forward to and more challenges as well I'm sure but I am enjoying every single moment to its fullest this year. I think it is important to try and count the blessings and wonderful positive things going on in your life in order to help you get through those rough days and challenges. I know I've said that many many times but it really is very important to me. I also find comfort in knowing that I am not the only one out there going through the different life events that I encounter. I am trying to find my place in this life and what my purpose is and what I want to do as well as trying to enjoy the ride getting there. There have been different times where I was where I needed to be at that stage in the game and other times where I have felt totally lost and this happens to be one of those times. I have been stressing over it for quite some time and am deciding to enjoy my life just as it is in this moment but to also keep my eyes and ears open for whatever opportunity awaits me around the corner. I guess we will see how this plays out :)
Have a blessed day!!

Slow Winter Days

It's been a slow couple of days with not much going on. I took the kids the other day to see their dentist. Darein didn't need xrays and got a good report so looks as though she is ready to proceed with her braces. Damein however had a small defect on the back of one of teeth that we need to get filled and he had xrays. He needs to get his wisdom teeth out and was supposed to get that done over Christmas break but since he had shoulder surgery we have put it off to summer break. So many things to get ready before he goes off to college!
Speaking of college, we went to a meeting at the school the other day about Damein's dual credit college classes. When we signed up and paid at the beginning of the year no one bothered to tell parents that we would have to pay again for the spring semester. We all assumed when we paid that that covered the entire year. We got the information we need to get him enrolled in his spring classes though and it is still 1/2 price compared to the college price. When he is done at the end of this year, he will have 14 hours of college credit in which is basically a semester and all for 1/2 price so not a bad deal especially considering MU prices are going up for 2011. I am very proud of him for doing so well. He has lots of smart kids in his class and he is doing just as good as the majority of them.
Funny story for the day, Darein came home from school the other day and said that she had a scary moment at school that she needed to talk to us about. She put her stuff up and came in to tell the following story :) She had a mouse that jumped off the top shelf of her locker at school! She screamed and said there were some kids that were sitting in the hall and they all jumped up and screamed. She went back to her locker later and saw another mouse and so shut her locker really quick. We asked her if she had food in her locker and she said no but she did have some candy in the top shelf. We asked her if she threw it away and she said no she was afraid another mouse would jump out of it when she went to reach for it. I called the secretary and she took care of it and explained that several had come in over the winter and kids had been leaving food in their lockers so it was a problem. We all got a laugh out of it and told Darein to quit leaving food and/or candy in her locker :)
Anyways, that's about all I have for today. The kids have been out of school due to snow for a couple of days now and everyone's bored. Darein's 4-wheeler is broke and needs fixed plus she has been sick the last couple of times after going back to school so we are keeping the kids in the house for the most part. Damein is finally heading out to the movies tonight with a friend to help with his cabin fever.
Hope everyone is staying warm and has a great weekend :)

An Eagle's Eye View of the Type of Care it Takes to Raise a Child With Antley-Bixler Syndrome

I was having troubles coming up with a topic to write about over the past few days as there hasn't been much going on. Therefore, I have decided to just write about the type of doctor's that Darein has to see and how they fit into our lives. She not only has several doctors to see, but most every time that she has an appointment it means that there is more homework to do or more decisions to make or more patience that is needed on our end to get to the end result. I had a lady e-mail me back several months ago as she had ran across my blog and was pregnant a second time after a miscarriage with her first child. She was now being told that her baby possibly had Antley-Bixler syndrome and therefore wanted some information as there is not much out there about it. Therefore, I try to write about the care and try to give helpful informative information to parents out there who may run into the same type of issue or who are trying to figure out how their lives will soon change forever. Not every blog that I write will be for everyone but hope that each blog that I write helps one person at least that reads it or offers insight to at least one person. It is easier just to go through my list in no particular order so that I don't leave any doctors out so lets get started :)
Darein sees a pediatric endocrinologist from Columbia. She sees him about every 4 - 6 months depending on the issues that we may or may not be having. He does what is called an outpatient clinic which is where he travels here to Springfield to see his patients once or twice a month. We see him in Springfield at one of the local clinics and he has staff there that you call to set up or change appointments with. Because he is located in Columbia, if you have any questions in between appointments you call his staff in Columbia for them to help you with any concerns or to get a message to him. He also is one of the kind physicians that gives you his email address so that you can forward articles that you have read to him for review or you can simply ask questions or voice concerns. He answers his email very promptly and also will call and speak with you directly if need be. There are no pediatric endocrinologists here in Springfield and that is why we had to get a physician from Columbia. He sees Darein for her Congenital Virilizing Adrenal Hyperplasia and monitors her medications for this as well as checks her bone age to make sure that she is growing appropriately plus it helps to determine if we are giving her the right dosage of medicine. He also draws labs fairly regularly which also helps to determine her dosage of medicine as well as any other issues. For example, Darein has been Vitamin D deficient for about a year to a year and a half and he monitors that and then prescribes Vitamin D as appropriate. He watches all of her hormone levels so that we know if anything isn't quite right. He is our physician that usually orders all the labs that we have to go to the pediatric outpatient unit for at the hospital as Darein has had so many labs drawn now that she is starting to form scar tissue which makes it hard for them to get any blood from her. These visits are usually very short unless we have an issue that we are dealing with and the visits don't take more than about 10 - 15 minutes and then if lab is ordered we head to the hospital for the appropriate testing. We will be seeing him later this month for our first visit in Springfield via Telecommunication. This is kind of a neat concept where you go to the clinic, he is in Columbia and you communicate in the patient room via a television. He doesn't need to do many physical exams other than on occasion so as busy as he is, this is a nice alternative that we will be checking out.
Darein also sees a gastrointestinal (GI) doctor from Kansas City. He also does an outpatient clinic here in Springfield, the same as her doctor from Columbia. We have only met him once. Darein was having some issues with her stomach and so we seeked him out. He is very good based on a first impression and I need to schedule another appointment with him. Unfortunately, we have had more pressing issues and her stomach issues have resolved for the most part at this time so we have placed this physician on the back burner for the time being. Darein also has gastroesophageal reflux disease and I want this doctor to monitor that medication and that disease process so I will need to set up another visit for him. Sometimes, with so many physicians we have to move them in and out as far as who is a priority and who we can afford to take a break from once in awhile. Darein has kidney issues and that was part of the stomach issues we found out later and so we have to resolve that issue to some extent before picking back up with the GI physician. Darein just takes Prilosec over the counter for her acid reflux disease right now and as long as that is managed then we feel that this is an appointment that can wait.
Darein also had a GI doctor from Columbia that she used to see. He was very good but was retired and saw her as a favor to one of Darein's other doctors at the time. At the time that she saw him she had cyclic vomiting syndrome which is also called abdominal migraines. She would have to be hospitalized and given IV fluids for a couple of days to get rid of it and he helped us through that tremendously. She has since outgrown that as of now and is doing better and therefore we decided since he had come out of retirement to see her and the issue had resolved that we would find another GI doctor to manage her gastroesophageal reflux disease which is when we switched to the GI doctor in Kansas City.
Darein sees a kidney doctor or urologist here in Springfield. Her pediatrician referred her to this physician for her left kidney reflux. However, this doctor does not perform surgeries and therefore placed her on a kidney medication and referred her to a physician in Kansas City that she sees more regularly for her kidney issues and who can do surgery if necessary. However, it is nice to have a kidney doctor here in town if there are any issues that need addressed. For instance, if Darein gets a kidney infection then she can be tested there and that doctor can monitor how many she is having so that she can report to the Kansas City physician or if tests need to be ordered then we can have them done locally and then her physician here can read it and visit with the doctor from Kansas City about the next step. We don't have a time frame on how often we see this doctor, just as needed.
As I said above, she also sees a kidney surgeon or urology surgeon in Kansas City. She does go there for her visits though I think that he does have an outlying clinic here in Springfield. Darein has only saw him once though and we are struggling with the care that we are supposed to be working on and therefore will probably have to see him again in Kansas City for awhile. We are supposed to be giving Darein Benefiber every day in her food and Miralax every day in a drink. Me, Shane and Darein all struggle with remembering to make this a daily habit. We fix dinner, fix her plate and then 9 times out of 10 forget to add the Benefiber. We have been working harder at making this work and Darein has not had any kidney or stomach issues in quite some time. I will be calling in the next few months to see about getting another xray and then setting up another appointment with the surgeon. Darein has a spastic bladder that is actually causing her issues. We have to get that under control by trying the Benefiber and Miralax before deciding what if any surgery is needed. They also have to monitor her kidney reflux with a cystogram which is very painful and traumatic for Darein. It makes it very hard to schedule these tests which I think are supposed to be once a year. She just saw this doctor about 8 or 9 months ago and I think he wanted to see her once every 3 - 4 months so we will work on setting this appointment up as it is very important. Just hard when she is doing good to think about putting her through the trauma and work involved in caring for this issue so we tend to take breaks on appointments like this as well, especially if she has had a lot of other stuff going on.
Darein started seeing an orthopedic doctor this year here in Springfield as she was diagnosed with scoliosis. These appointments are painless and she goes in and has an xray and then the doctor looks at them and if she stood up straight and tall and everything looks good then he sees her back in 6 months. If she doesn't stand up straight and tall and her curvature looks bad then he sees her back in about 3 months with another xray to compare it with the previous xray. She is doing well and mostly just has bad posture but if we get a good review next month then she will only have to see him once a year I think for monitoring.
Darein sees a plastic surgeon in St. Louis. We actually have to travel there and these appointments usually take about 3 - 4 hours depending on how many doctors we have to see from the team. When we go here there is a team of doctors that Darein sees from a psychologist, orthodontist, dentist, ear nose & throat doctor and the plastic surgeon. Darein is going to have her jaw reset as well as a rhinoplasty where they will take part of her rib bone and place it in her nose for the bridge of her nose. There is no one here in Springfield who can do this surgery which is why we must travel so far besides the fact that he is the best in the State of Missouri. They see her once every two years to make sure that she is adjusting well, talk about any concerns with breathing, eating, etc. They give us advice on things to work on, what the next stage is and what we need to do prior to getting to that stage. We just saw him at the end of last year and he confirmed that we are ready to start surgery if we wish to have it done. There was much debate in our household as to whether this was something that really and truly needed to be done and we had to weigh the pros and cons for quite some time but I am happy to say that we have decided to proceed. This is a huge step for us and we are all extremely nervous as this is a huge surgery, very dangerous and very life changing for us as well as Darein. We have talked about it since her birth but for it to be time for it to be here is quite overwhelming and there are lots of emotions involved in this. We will start braces in the next month or so and she has to have them on for about 18 months. We have to contact the plastic surgery office about 9 months prior to her being ready for surgery so they can start processing the paperwork to file with insurance and insurance companies fight extremely hard about paying for this. It is an extremely expensive surgery and not one that insurance companies take lightly. Once the insurance is hopefully approved then we proceed with the jaw surgery. Once that is healed to some extent then the nose surgery will be performed and her braces will come off approximately 6 months after the surgery.
We have chosen our orthodontist as I mentioned in my last post and therefore he is in Springfield and we will work closely with him. Darein will see him every two weeks for the first 3 visits and then once a month for about 18 months I am assuming.
Darein did see a pain doctor in Kansas City when she was diagnosed with chronic regional pain syndrome a couple of years ago. Since that time, her pain has resolved for the most part and that doctor has left the clinic. If we have any flare ups that I cannot get under control with physical therapy then we would have to contact that office again and find out who the doctor is that replaced the previous pain doctor and go from there. They do not come here to Springfield and with Kansas City having a children's hospital it is a place that we feel comfortable with those physicians.
Darein also sees a neurologist in Columbia though she does not see him on a regular basis. Columbia is out of network with out insurance company and so we have just a couple of doctors that we see from there that we are willing to keep despite the fact that they are out of network. The neurologist is one of them at this time. He is very good and mostly Darein just gets referred to him when she is having an issue or an opinion is needed in that area. We could see him once a year if we really wanted to keep him as her neurologist where we could get an appointment quickly and easily. However, at this time we don't feel that is necessary as she hasn't had to see him very many times over the course of the 15 years that Darein has been with us.
Darein obviously also has a pediatrician here in Springfield though she doesn't see her much. She will see her for some minor things but we mostly use the expertise of her endocrinologist to guide us as far as her care simply because we started with his predecessor when Darein was born and he has known Darein longer than any of her other physicians. Her pediatrician is wonderful though and has no problems asking us who she needs to call or our opinions about issues as she knows that we have been caring for Darein since day 1 and there is much about this disease that she doesn't know. I appreciate someone who is willing to put their pride aside for the greater good of the patient. Any one that does that ranks very high in my book :)
Obviously, Darein also sees a dentist once every 6 months and we have one that we like are happy with. His appointments are typical dental appointments and he leaves any of the complicated stuff to the experts in their field.
Darein also sees an ENT doctor here in Springfield. We like him very much as we met him when he worked in Columbia and was very happy when he moved here to Springfield and opened a practice. He has known Darein for quite some time and sees her for her conductive hearing loss that she wears hearing aids for. He is the only ENT doctor here in Springfield who performs cochlear implants. He has replaced the malleus bone in Darein's left ear and put many tubes in both of her ears over the years. He feels that her cochlear is not formed correctly but states that he cannot fix it at this time since it is congenital (at time of birth). He says that it is much more dangerous and the risks are too high to try to fix it at this age. He is working on inventing new technology that will help her one day in the future. He has decided as of a couple of years ago that he can no longer do anything for her at this time and therefore feels that he does not need to see her unless we have any problems. Therefore, he has gone on the back burner and we just call him if she is having any issues with ear infections or earaches and will plan on contacting him once she is 18 for another consultation to see where we are at and what the plan is at that stage. In the meantime, she continues to see audiology once a year to have her hearing checked, molds checked and if needed ordered and then new hearing aids every 4 - 5 years or so.
Last but certainly not least, Darein did have a geneticist who saw her from birth at Columbia. He finally was able to diagnose her when she was 10 years old with Antley-Bixler syndrome, wrote an article about her in the Medical Journal of Genetics and has moved on to Virginia and now is currently back in the area in St. Louis. Darein does not need to follow a geneticist any longer as there is nothing more for them to do. However, we do keep in contact with this physician as he has been a lifeline when we didn't know a diagnosis or what to expect in the future. There are still many unanswered questions and we have come to terms with the fact that they will most likely never be answered as Darein is an individual and therefore she will develop as only she can and there is no comparison.
I don't know how long my list of doctors is for Darein but I have gone through all of them above. As you might have noticed in the writing above, there are several physicians in which we sometimes have to put on a back burner or care that we have to take a break from. I think that this is a necessary part of continuing to try to live a "normal" life. You can't always deal with all the issues all the time and keep your sanity. A break here and there doesn't hurt anything as long as you are aware of it and make sure to pick up where you left off in a reasonable amount of time. Sometimes, you just have to step back, prioritize what has to be taken care of and live your life with the remaining amount of time until things calm down on one end and then you can pick something else back up. I think that this is healthy and much needed in order to gain perspective. I know this post is extremely long and so hope you will forgive me for that but I also hope that you really enjoy it and have a better understanding of the preciousness of human life and setting priorities whether you have a special needs child or not.

Focusing on Things of Importance

I had a fun filled day today with my kids! I love those days that I get, to take a little time out from the hectic daily grind of life and just enjoying my kids. Today was another big moment for Damein as a Senior in high school, he had his Senior pictures taken. He was concerned about my choice of photographer as it was a personal friend and he hadn't seen her work before and wanted to make sure he was going to get good photographs. I on the other hand, was concerned that he would be stiff and nervous and not relax enough to take good pictures. Needless to say, the photo shoot went extremely well. Me and his photographer both assured him that she had been doing this for quite some time and that she knew how to use photo shop which he wanted to make sure could be used :) He felt comfortable for the photo shoot and relaxed and had a great personality for the day. I think he really enjoyed himself which was nice to see. I enjoyed getting to connect with him in this way a little bit as we don't connect on many things. We are receiving some of the pictures already via email and he wants to know when they come in so that he can review and decide what he likes and what he doesn't. These few and far between moments with him are wonderful!
Once Damein was done with his photo shoot he had me drop him off at home while me and Darein went to the mall to do a little shopping for jeans. Me and her had such a great time as well with our one on one time. We actually agreed on all of the jeans that she tried on except for one pair which was pretty good I thought for us ;) I thought her jeans were $25 each because of the tag and no sale sign on the rack. However, when we went to pay they 50% off!! That was our great deal of the day and made mom very happy :) Once we were done Shane had called and said that he found out the name of a place in the mall that had a certain St. Louis Cardinals baseball calendar that we had been looking for so me and Darein headed to the store and picked it up for Damein. Once we were done at the mall we decided to stop in and get something to eat. Me and Darein decided that we were in no rush to get home and so decided to eat there. It was nice to sit down and have a one on one conversation with her. She is growing up so much and it has been really nice since this summer to actually be able to connect with her. Prior to our vacation I have been very wrapped up in her medical care and spend most of my time worrying about her instead of getting to know her. We are really starting to develop a wonderful, close relationship which I never would have guessed I would have with her. We are extremely different but am learning that we are more alike than I realized. We finished the evening off watching some rented movies at home.
I know today's post is kind of boring but sometimes I don't have much going on and sometimes I think it is just important to reflect on people in our lives that are important to us. My kids have always been extremely important to me and my husband but sometimes life can distract you from the importance of making sure you develop and nurture those relationships. Remember to tell someone you love how important they are by taking some time out of your busy lives to spend some quality time with them so they know you care.

Second Opinions

We went yesterday to meet with an orthodontist for a second opinion about Darein's braces. Yes, we know that she needs them that is not in question. We were a little unhappy with the set up at the other orthodontists' office. I just think that it is a little intrusive to have to walk through patients who are out in the open to get to an office for a consultation and then have the door open the entire time. When we go to a doctor's office I like my privacy to speak with the physician without hearing everyone else's medical information. I know this seems to be a growing trend in the dentist and orthodontists office but it isn't one that I feel comfortable with. I am also not a fan when physicians speak to you of them talking really fast and giving very little information and then asking if you have any questions...kind of makes me feel like they don't know what they are talking about or are leaving the expertise in my hands. I didn't go to medical school and don't like to be the expert on my daughter's care. Yes, I want to have an input and an opinion and I want to be a knowledgeable patient but I don't want to feel like I am the puppeteer pulling the strings and making all of the decisions.
Anyways, the appointment went very well. Darein was very determined that she was not going to make a decision about who we chose as the orthodontist and stated that she didn't care. We really try to have her be a part of the discussion and have her input on decisions about her medical care as much as possible. I was frustrated with her but told her that we would go and see what we thought. The office was very friendly and the atmosphere was soothing compared to the chaos of the other office that we visited. We were led back to a private room and didn't have to walk through patients to get there which was nice. When we were taken back one of the hygienists came and spoke with us and told us what to expect. The doctor came in shortly and explained that he was going to look at Darein's mouth, take a few notes and then visit with us. He did ask some questions before and as he was looking at Darein's mouth to get some background. He was very pleasant and made sure to talk to me and Darein both. He assured us that he had 7 other rooms all just as private as the one that we were in and that we would see him every month and not just a hygienist tech. He stated that there was no charge for molds, braces, etc separately...everything was included in one price. He stated that he would put both the top and bottom on at the same time instead of making us wait between sets which he said other offices do for financial reasons only but takes longer treatment by doing it that way. Therefore, Darein's braces should be done in about 2 years instead of 2 1/2 years which is nice. He was very knowledgeable of the surgery that she is scheduled for and assured us that he would be in close contact with her plastic surgeon in St. Louis via phone, email or written letters. He explained that he would put an attachment onto her braces after visiting with her doctor in St. Louis if he would like them to in order to make it easier for the wires that they sometimes have to apply during surgery. He asked Darein if she had any questions and she asked him how he took the braces off as she was worried about the pain. He explained that they just cut them off and that it is pain free as he does not like a lot of pain in his office. She also still has 2 baby teeth that we have been told needed to be extracted prior to her getting braces on. He assured her that he doesn't do things this way and that her teeth will fall out on their own and he will make adjustments as necessary. There is one that he said might have to be extracted that is a baby tooth but he said that we will leave it be as long as possible and not take it out unless absolutely necessary and definitely will not have to be out prior to her getting her braces on. He explained that once we get the molds, it will take approximately two weeks before Darein would come back and at that time she would get her braces placed. He told us that he had been in practice for 30 years and that he strongly encourages patients to seek several opinions prior to making a decision on an orthodontist. Needless to say, me and Darein were extremely impressed. He was about $300 higher than our other consultation but broke payments down a little cheaper and it was a set fee with no surprises. We have to make a down payment and therefore will wait just a little bit before starting but hopefully with in the next month or so we can get started. Darein talked quite a bit after the appointment and is actually excited now to start her braces and said that she really liked this doctor better than the other office and he made her feel comfortable about everything. Sometimes, you just need that little extra caring in a doctor. In a day of no customer service, its the little touches that make things so nice and can make all the difference in the world. We will definitely be going with this doctor.
We have seen many physicians over the course of Darein's life so far and we expect that extra little touch out of them and their offices. There are many many doctors out there and if you don't feel comfortable with how yours is handling their business and they don't take the time to explain things, visit with you as a person who has an intelligent opinion or their office staff is not pleasant then there are enough others out there to try someone else. I find it extremely important to make sure that you mesh with the physician that you are choosing. Not all of them graduated at the top of their class and there are definitely good and bad physicians out there just as in any other profession. Even if they are good, they need to have good customer service skills with you as a patient. By customer service, I don't mean that the customer is always right but I mean a mutual respect for you as a patient. We have seen physicians in Columbia, MO; St. Louis, MO; Kansas City, MO; and here in Springfield, MO and I can tell you from experience that it makes it so much easier to be a compliant patient if you and your physician are on the same page 100%. I have had doctors that have told us when we call, we need to notify the receptionist that we need to talk directly to the doctor every time. We have had doctors that give us their email address and communicate via email with us so that we can visit with them in between appointments about things that might come up. We have had doctors that give us their home phone number and tell us to call any time day or night if there is an issue. Yes, these are exraordinary doctors and not every case needs to be communicated with the same. However, your doctor should know the patient well enough to know what their particular situation is and how the family is and then decide what is going to be the best benefit of being able to work with that patient. Every individual is different and we deserve to be treated accordingly instead of as a mass.
I hope that the above information today has been helpful to someone who is seeking medical care, seeking a second or third opinion or trying to decide if their current physician is right for them. Just because you may or may not get along with your physician doesn't mean that they aren't good, it may just mean that they aren't right for you. Surgeons are a little trickier as MOST do not have very great personalities and so in that case you have to go with expertise and put personable behavior on the back burner. However, for choosing a physician that you are going to have to work closely with the above information is extremely important. We have had mostly phenomenal physicians over the course of Darein's life to date. However, there have been a few that we have had to seek expertise elsewhere. Mostly, it was just a gut feeling and not something majorly wrong with the physician. Sometimes, you can just feel that something is missing or you aren't quite getting the care that would like to receive. A lot of times I know we are a little more careless with our own personal physicians when we choose them but it is important to have that confidence in your physician whether you are working with them for yourself or with your child or other family member. We are in a day of very poor customer service and if we want better than we have to demand it by choosing wisely who we give our money and trust to.
Have a great day :)

New Year, New Resolutions

Well, its been an awfully long time since I have written on my blog. Thought it was appropriate to start back and try again...after all, isn't that what new years and new resolutions are all about? Last time I wrote was right before me and Darein went on vacation! So lets see if I can catch up on time between now and then so that I can get a fresh start on this blog writing thing :)
We had a fantastic time on our vacation and saw so many things and met so many new relatives and saw some relatives that we already knew but hadn't seen in awhile and made some great connections. Once vacation was over it wasn't long before school started back. Darein has done an absolutely fabulous job of attending school and enjoying it this year. It is such a nice change from the last few years. I no longer have to worry if she is really sick when she tells me she is too sick to go to school because she absolutely loves school and hates to miss now. She says its because she was homeschooled for the past year and absolutely hated it and would much rather attend regular school than have to go back to being homeschooled :)She may have lost a year basically of school by being homeschooled but she definitely gained a life experience which is more than she could have ever learned at school. She met a cousin while on vacation that was a Vet Tech and talked to her extensively the day we visited with her about this and even got to visit her clinic that she worked at. This was a huge inspiration for Darein and she decided then that she definitely wanted to be a Vet Tech. It is so inspiring to see her have a goal and working now towards that goal. She is finding out everything that she can about that job career and doing what she can to work towards that goal. She took an Agriculture class and has joined FFA and is raising a guinea pig for her project. She is hoping to breed her :) We have a friend who bought a male for his daughter and so we are going to try to breed the two, this could be an interesting project! Darein's study skills teacher has a brother who owns the local veterinary clinic and so she set up a time for Darein to get a tour of the clinic and Darein enjoyed it very much. Darein also applied to be a volunteer at the local Dickerson Park Zoo but unfortunately was not chosen. She will try again next year and her study skills teacher has talked to me about trying to make sure that Darein gets on there. She also says that Darein should be eligible to be a part of the OTC Vo-Tech Vet Tech program over the next 3 years and then will be able to be a vet tech when she graduates high school. I am so proud of sis beyond words, never knew if she would make it this far or not. Her progress is absolutely incredible to me. Never say never because my daughter is absolutely living proof of how to overcome all odds at all costs. I understand that more and more everyday.
We went and spoke with her plastic surgeon at some point about the possibility of Darein having facial surgery. The plastic surgeon says maybe it isn't medically necessary as far as she can eat, breathe, etc. However, there are no guarantees that she won't have problems with these things later in life. We have had to decide whether we wanted to start this process or not and have had a difficult time with this decision. Darein has had about 8 surgeries or so and to be told that she could get by without surgery, it was definitely tempting to avoid the surgery. She would need braces for about 18 months, then while the braces are still on plastic surgery would then pull her top jaw forward and pull the mid-face forward. As that heals and the braces come off over the next 6 months, then somewhere in there they would take a part of Darein's rib and place it in her nose for a rhinoplasty...to give her a bridge in her nose. This is quite an undertaking and nothing to take lightly by any means. Me and Shane definitely had many different viewpoints on this area but have finally decided to proceed. In the midst of all of this, Darein as you know has scoliosis. This was improved by the time we went back after vacation and so no brace is needed at this time. She needs to continue to work on her posture and as long as she continues to work on her posture hopefully no brace will be necessary but we will continue to follow the orthopedic doctor every so often. We thought we had an orthodontist picked out but have received different reviews in regards to their office. They are the most expensive in town by about $1,500 - $2,000 which is quite a bit so we are seeking a second opinion and will go from there. She has an appointment tomorrow with the second opinion. She has a full year of new medical things going on and an awful lot going on at her school that she involved in. She is a freshman and made Freshman Homecoming Princess. We were so proud of her and the opportunity that she received by getting to participate in this honor among her classmates. She was absolutely beautiful and I am so grateful to her student body for nominating her and allowing her to be a participant in this special honor. I can't wait to see what all life has to offer her. She is definitely meeting it head on and I am so proud of her that I can't even put it into words. She is just an incredible person and I got to grow so much closer to her over vacation and really got to know her as a person. This was time that was invaluable and I will always cherish beyond belief. She will be attending a Blume conference with her Acteen group in July at Orlando, FL. She is very excited about this opportunity and the opportunity to get to fly for the first time in her life. She is definitely her momma's girl as far as her personality goes :)
Damein has had an incredible year. He went to Prince Edward Island, Canada for a mission trip and led the devotions in his group. I am so extremely proud of the young man that he is turning into. He went on a trip to the lake this summer after he got back from Canada and jumped from the boat onto the intertube and jammed his shoulder. He complained about it quite often but we told him that surely it would heal. He finally quit complaining about it and we assumed it has healed up on its own. Unfortunately, he was in weights one day and was doing an overhead military press and his shoulder fell out of socket. I guess, he about fainted and went white as a ghost but being the typical guy that he is, he didn't cry of course :) He went to the nurse's office and laid down and when he went to get up, it popped back into socket on its own. There was no need to take him to ER and I happened to be with Darein at the orthopedic doctor when I received the phone call. I spoke with her doctor and he agreed to see Damein and told us to schedule him with an appointment with his regular doctor and to get a specific MRI so he would have all the information when Damein came to see him. I did this and Damein ended up having shoulder. It was his left shoulder and an anchor was placed as the gasket in his left arm had been tore pretty bad. The doctor said he was quite a tough guy for it not to be hurting and for him to be doing as well as he was. He recovered from surgery well and has been attending physical therapy. He received the okay from his doctor the other day to start Healthtracks which is a form of physical therapy with strength training to get him back to baseball. He should be ready to start back to baseball in one month and so should be ready to start his senior year by the time the season starts. He has decided not to play baseball in college as he wishes to pursue other interests and concentrate on his studies. He plans to attend the University of Missouri and acquire a major in Chemical Engineering. He has taken about 8 college credits and I think the 2nd semester he will gain another 8 college credits before ever starting college which will help him tremendously. He is so smart and I am so proud of him. He really seems to have his act together and I hope that that continues for his sake. We took him to get a haircut today as he is scheduled to get his Senior pictures Saturday. He says that he is attending prom this year though he doesn't have a girlfriend at the time and doesn't know who he will attend with. Just glad to know that he is going to go since he chose not to go last year. It is a big year for him and he is very excited but mom is sad as I realize that he will be gone soon. Damein is in hopes of taking a Senior trip this summer so we will see what he comes up with and try to accomodate him. He has been applying for scholarships and I am in the process of filling out his FAFSA form. We still need to pay his admittance fee to MU, find out the cost once all of his financial aid forms and scholarship info is made available for review and then visit for a summer program and get more information in March from the college. So much to do still to get him to that final point of move in day :)
It will be mine and Shane's 20 year anniversary this year at the end of September. We have never had a honeymoon and as too many things are going on this year with the kids, we don't feel it is a good financial decision to try and take a trip together this year. Therefore, Shane is sending me and my best friend and my sister to Vegas for his anniversary present to me. Our birthday's are a week apart in May and so we have decided to go in March. If we decide that we are able to do something for our anniversary, all the trips with everyone will be done and out of the way by our anniversary and we can make an educated decision at that point.
2011 brings many new things for our life, some scary, some exciting and all brand new. I look forward to facing it head on and seeing what the new year brings :) I hope that I am able to write more often on my blog and keep up with it better and hope that everyone enjoys continuing to read it!
God Bless :)