Tuesday, November 24, 2009

An Introduction to My Daughter

I haven't had much to write about in the past couple of days. I did purchase my locking gas cap and it seems to be working so far. I think that the neighbor's other car got repossessed as there has been no vehicle there for a few days now. We are hoping that maybe they will move soon but the gas problem appears to be resolved. As far as the mouse problem, I have 4 mouse traps set and still have no mouse. I haven't seen it again though my husband caught sight of him a couple of days ago so we know it is still around. Hopefully we will catch it soon.
I just have to start out by saying that I could write a book about my daughter! I will try to introduce you to her today in as condensed of a form as I can. Her name is Darein Mercedes-Elizabeth Blanton and she is 13 years old today but will turn 14 on the 29th of this month. She is one of the most incredible and inspiring people I could ever hope to have the pleasure of knowing. I will never forget the day I was told that I was having a girl. I had had my boy and was glad to have had a boy first but was so wanting a girl more than anything. This child makes me smile bigger than anyone else can, makes me cry harder than anyone else does and is the reason I get up every single morning. Miss Darein came into our world with something wrong with her that no one could tell us. We were sent home and told not to bother coming back if she got sick because there was nothing they could do for her as they had no idea what was wrong with her. Fortunately, they did call a geneticist from Columbia who helped us and cared for her until the age of about 10. He diagnosed her with a very rare syndrome called Antley-Bixler syndrome. Only about 50 children from all over the world have this syndrome. It is a musculoskeletal disease that mainly affects the strength in her forearms and fingers as well as her bone structure in her facial features. Along with this syndrome she has multiple other medical problems that are associated with her syndrome as well as some other medical problems not known to be associated with her syndrome. She suffers from congenital virilizing adrenal hyperplasia which she takes replacement medication for. This will never go away and just simply means that her body doesn't produce enough of a hormone called cortisol which is a hormone that increases in your body when you are sick, have broken bones, etc. It affects her stress levels and therefore when she is under any sort of significant amount of physical stress she needs stress doses of her cortisol. If she does not receive these doses or does not take her medication properly she could go into a kind of diabetic coma and possibly even lose her life because of it. It is very important for her doctors to monitor her hormone levels as it can affect her height, weight, and over all quality of life. The only way for her to get these levels monitored is through lab work and she has to have an xray called a bone age scan which is just a scan of her hand to determine if her bones are growing appropriately for her age. She also suffers from conductive hearing loss in both ears which requires her to wear hearing aids. There is nothing that can be done for her hearing loss at this time as possible surgeries are too risky and she hears fine with her hearing aids. If she chooses not to wear her hearing aids she can still hear what you are saying but it may sound muffled to her and she may need you to repeat what you have said. She also suffers from gastroesophageal reflux disease which is easily controlled with medication at this time. We will be meeting a new GI doctor in January as we need to stay on top of this especially since she has developed this at such a young age. Reflux can tear up your esophagus over time if not treated properly or just from having it for so long and she has never been under close supervision for this part of the disease. Because of the way Darein's facial features are set up due to her syndrome, she has no bridge in her nose and therefore gets many sinus infections that cause her lots of problems. She takes allergy medicines and we just continue to monitor this for now. She will be in need of braces coming up soon and once those have been on for awhile then her plastic surgeon will start the proceedings for her jaw surgery as she needs to have her jaws aligned bilaterally and we are hoping that this will help with her sinus drainages as well. There is no need to do a rhinoplasty at this time as she is able to wear her new glasses with no problems and is quite comfortable in her own skin. If she chooses when she is older that it bothers her and she wants to do something about it then we can take care of that for her. She was more recently diagnosed last October with a disease totally independent of the Antley-Bixler syndrome called reflex sympathetic dystrophy (RSD) or chronic regional pain syndrome (CRPS). This came on all of a sudden and caused her to have to be in a wheelchair. It is a disease where the spinal cord sends a message to your brain telling your brain it hurts when someone touches your body. It affects the nerves in the affected area and even causes swelling from the nerves being so irritated. After much medication and horrible side effects, we took Darein to physical therapy and learned a light touch craniosacral combination therapy that Darein has responded very nicely to. After some time, she was able to come off of all of her medications and we are able to keep it under control and in remission through home physical therapy. There are no guarantees that this won't flare up at any given time again or that it won't come back. She is now walking and doing very well with minimal to no pain most days. We pray that this stays in remission permanently as this has been one of the most horrible things that she has had to endure in her life. We also found out recently that she suffers from a grade II left kidney reflux. This is mild but because she had one when she was just a year old and it had resolved and is now back she will now have to undergo surgery to correct this. We will go in February to a specialist and see what surgery he recommends. We are not sure if it is just Darein's personality or due to her medical conditions but she moves very slowly about doing things. She doesn't get in any big hurry. Learning disabilities is part of the Antley-Bixler syndrome and she has troubles in school but fortunately doesn't seem to be suffering from any learning disabilities. Her low grades seem to be due to her not getting work done or done in a timely manner and from missing so much school due to her illnesses and therefore we meet with the school and set up special standards to help assist her with school. She will never be an A kind of student as that just isn't in her personality or the type of student she is. She does struggle with school in general as far as her grades though her teachers are quite confident that she is understanding the material. I think she may possibly just have a different learning style than your typical child which she has to make adaptations for and which slows her learning down some.
You have most of Darein's medical background now but I still haven't told you who she is as a person. After enduring everything that she has been through, this child has the best attitude a parent could ask. She makes me and my husband laugh each and every single day, at least once a day. She is definitely her own person and is so comfortable with who she is that you can't help but smile at her no matter what she does. She is very creative and quite talented in the artwork that she does. She states that she doesn't know what her medium is yet but has a special talent for putting colors together. She has decided this year to try painting a little more and to try to fine tune that talent and see how much she enjoys it. Most of us have that little voice that makes us self conscious about what we do based on what we think others might think of us, Darein does not have that at all! She is great :) She knows exactly what she wants and has no barriers preventing her from making it happen. She isn't shy, she isn't fake, she just is. She has a great love for animals of all kinds. She wants to work in a zoo one day and gets to job shadow a zookeeper at the zoo next week for 1/2 a day and she can't wait! She doesn't talk much and doesn't smile much which gives people the impression that she is shy and unhappy which couldn't be further from the truth. She is actually just checking you out when she first meets you and sizing you up before she opens up to you. She also has troubles hearing people so she may not react appropriately if she didn't hear you but will rarely ask you to repeat yourself especially if she isn't very comfortable with you yet. Sometimes it can take awhile for her to warm up to you but then once she does you will find she has lots to say. She doesn't smile much but I think only because she doesn't feel the need to smile out of politeness. If she thinks you are funny or what you have to say is funny then she will give out a hearty laugh or a smile. For example, she got her hair done tonight and I was very nervous about it. When it was done and I was going on and on about how cute it was she gave out a very loud abrupt "HA". I looked at her taken aback a little and she just said, "I told you it would look good, now you have to trust me". I just smiled at her and told her okay.
I hope I have given you some sort of insight as to who my daughter is. She is a special needs child and someone who more often than not requires an extremely large amount of time and effort which can be very tiring. However, when she gives you those million dollar smiles or says the funny things she does that makes you feel so happy, nothing could ever replace that. She has brought me more joy and taught me more about patience, love, living in the moment and life than I could ever learn from anyone else or from any book or any other medium. She is truly the reason that I get out of bed every morning and she makes me want to be a better person. She is one of the reasons that I feel so blessed and thankful this Thanksgiving and I am thankful for every day that I get to spend with her and for the person that she has turned me into today.

Saturday, November 21, 2009

Inspiration for the Holidays

I had nothing exciting happen today as I had a headache most of the day, slept in and finally got up to finish watching a couple of movies that I had to take back today. I was dreading watching them since I didn't feel very good and the end result meant that I would end up having to go into town to return the movies. However, I watched my first movie and it wasn't bad and I only had one more movie left and was thinking of not watching it before I returned it but decided that I might as well because I had this nagging suspicion that I would be missing out on something if I didn't go ahead and watch it. It was a good thing I did as I learned so much and would like to share that with you.
I watched a movie today titled "The Soloist" with Jamie Foxx in it. It is a movie about a homeless schizophrenic cellist and a New York Times journalist who comes into his life.
I have to say that this has been one of the most inspiring movies I have seen in quite some time. The main reason I am writing about this today is because in the movie the journalist happens to meet the homeless cellist while looking for his next story and decides to help him and write about it. He is so focused on helping the young man but only just enough as he doesn't want to be too involved in his life. I think that so many times we as a society are just like the journalist. We don't mind to help someone throughout the holidays or we don't mind to help them out the way that we want to help them out and yet all they really need is a friend, someone who will be involved in their life. If you befriend someone like that you have to be a true friend to them and actually take an interest in someone outside of yourself and that requires a lot of time that most of us aren't willing to give.
If you have ever reflected on your own life or heard other people talk, you most likely have heard yourself say or someone else say that you are happy that you don't have needy friends in your life or you can't be friends with a certain someone anymore because they are just too needy. We all have such busy lives and most of the time I think we feel very overwhelmed by trying to take care of our family's needs, our extended family's needs, etc and honestly if you are like me you are not even much of a people person. I can honestly say that as a whole I think the majority of Americans are stupid, self absorbed, money hungry people who are only concerned about how they look to everyone else. I have been looking for someone to help for quite some time but I seem to have this nagging about what kind of person I need to help and how much do I help them because I don't want to be too involved. After all, I have a daughter who requires an extremely large amount of my attention, a son that I am trying to get ready for college, a husband who works so much that I rarely see him and that doesn't even include my friend time and extended family time. I continue to ask God, how am I supposed to take on anymore? Society has been telling me for such a long time that it is okay to say no, sometimes you just have to. In reality though, we don't say no to meeting new people and trying to become friends with them. We join social networking sites so that we can meet more people and let people know more about who we are, we text people so that we can keep in touch because we are just too busy to pick up the phone and say hello or to go visit a friend or family member and yet we are constantly telling the world on our social networking sites how busy we are spending time with our friends and family. Do you see the irony?
As for me, I believe I will reach out to someone over the holiday season and if nothing else, just be a friend to them. It may be a homeless person, it may be an elderly person, it may be a child, it may just be someone that is already in my life that needs a friend and that means me being there for them, not to change them, not to help them though I think those things might come all by themselves but those things are not my mission but simply to make a friend who needs someone in their life.
Our community is growing tremendously and as a result of that I think that it is our responsibility as good upstanding citizens to take care of someone either by volunteering at a local charity, taking time out just to be nice to someone at work or church that people tend to shy away from and becoming their friend, or even just by being a BETTER friend, family member, etc. I don't know for sure what I will end up doing but I do know that I am going to start simply by being there for the people that are already in my life. Sometimes it is easier to help strangers than the people that you already know so well and yet sometimes those are the ones that need it the most. Just try to carry your generosity past the holidays and into your everyday life. This Thanksgiving I will be thanking God for the many people that he has put in my life and learning to appreciate that, instead of looking at it as a burden and just one more person that I have to participate in their life.
Happy Thanksgiving!

Friday, November 20, 2009

An Excruciating Day At The Doctor's Office

What a day it has been today! Sometimes, I forget how tiring days like today can be. Darein didn't have to be at her endocrinologist's office today until 9:20am, which meant that we would get to sleep in a little bit. However, by the time I took Shane to work at 3:30am, got home and wasn't tired I only ended up with about an hour of sleep before time to get up again and get Damein ready for school, take my shower and get Darein up and ready for her appointment. Darein knew that she had an appointment today so she knew she would have me on top of everything that she does today. I have to double check with her every single day, make sure that she has washed her hair good, make sure that she has good clean, weather appropriate clothing on, deodorant, teeth brushed well, hearing aids in and meds taken. On doctor appointment days it is especially critical as I sometimes forget to check or ask a few things here and there and then end up embarrassed at the doctor's office as she has most likely forgotten something. However, today was all checked except I forgot to check her socks and she ended up with dirty socks. I always seem to forget something and whatever it is that I seem to forget never seems to be a matter of importance to her. We show up at the doctor's office, everything goes well and she informs me that it didn't even matter that her socks weren't perfectly clean as I was so worried about because he didn't even check. The kid loves jewelry and shoes but could care less about showers, hair or clothes. This can be very frustrating most days. We talked to the doctor about a number of things but overall he was very pleased at how much happier she seemed since the last couple of times he had seen her. She was very happy and very much pain free. We are worried about some possible puberty delay, which I am sure she appreciates me placing on here. As she would say, TMI mom :)However, it is an issue that no matter how delicate we had to address. She was scheduled for several labs including: cortisol levels, electrolyte levels, thyroid levels, estrogen levels, vitamin D deficiency levels and maybe a few more. We told the scheduler that we needed to go to see Suzy at POPS at the hospital. She explained that she had moved to the St. Jude Children's department and was not over at POPS very often. If you have a child that is ill more often than not, you will realize the trauma of a statement like this. Darein has so many medical problems and is such a hard blood draw stick that we hate changing doctors or phlebotomists once we find someone who is good. Suzy is one of those people. The scheduler went ahead and called over there and told us to give it a try by checking into Admissions at St. John's, telling them where we wanted this done and then heading to xray for a bone age scan which helps to assess whether she is getting the right amount of cortisol or not. We headed over to St. John's, checked in and was pleasantly surprised to get to the POPS department and discover Suzy meeting us at the door. She remembered Darein and was very happy to see her and told us that she was still in that department as often as possible and for us to continue to be seen there. We were also greeted by the lady that had to come down and do Darein cystourethrogram a few weeks ago because the regular nurse could not get it. We were thrilled and thought that the blood draw today would be nice and simple. However, they had to wait on orders to get things condensed as much as possible as much blood was needed. Finally about an hour later, they started the process. Darein was unfortunately stuck 6 times between these 2 wonderful nurses. They ended up extremely aggravated as well as Darein. She hurt and we decided that our only option to get the remainder of the blood was to get an arterial blood gas draw. This can only be drawn by an ABG tech or a physician. There happened to be a tech there from that department and he attempted to draw her blood from an artery. After several minutes and a few attempts he was finally successful. Once the blood was drawn we still had to go back downstairs for a bone age xray, 2 1/2 hours later we completed all tests. Shane fortunately had a friend that was getting off of work about the same time as him and brought him over to the hospital to meet us so that we could then leave. We headed to the movie store to return a few items, rent a few items and then headed to the grocery store to pick up stuff for homemade tacos tonight. Once I finally got home, I did a load of dishes and got the kitchen cleaned up and started working on making tacos. Darein took the dogs out and played with them a little bit while dinner was being made. Once dinner was made and ate we decided to watch movies for the rest of the evening. I have to get up and take Shane to work at midnight but other than that we should all be able to sleep in tomorrow and enjoy a nice quiet day though laundry and yard work and other household duties will inevitably call my name. It is hard to imagine that it would be so tiring watching your daughter suffer for an hours worth of lab draws but it is extremely exhausting and then you still have no results at this time and get the pleasure of waiting for those. I don't blame anyone but find it funny when people think that we don't have it so rough because our child is not dying. I want people to realize that there are all kinds of sick kids out there and just because they aren't dying or suffering every day doesn't mean that they don't go through a tremendous amount of effort to get where they are at today. There are definitely kids that are so much better than her and yet there are children who are also much worse off than her too. We pray for all of those children no matter what their circumstances because no matter what is wrong with a chronically ill child, there is always something to be done with them and so much work yet to come. Every single day is a blessing and a challenge in the same sense. We didn't get to go to Hobby Lobby today as Darein wanted to to look for a birthday gift because we were just too tired by the end of the day. We will try maybe once again tomorrow but with ill children you can only hope that your plans work out but have to learn to expect them not to. I am a control freak and once I tell someone that this is what the plan is and that is what is going to happen, I expect nothing less and will nothing short of stopping to make sure it happens. However, you also have to realize at mom your limitations as well as your childs and sometimes those things don't go as planned and so you work towards that goal once again.
I hope all goes well with Darein's tests and we will be waiting now to see whether or not she has to start estrogen and then have another ordeal of things to work on. We learned today that she will see Dr. Roberts, GI doc from KC on January 4, 2010 and then sees her urology surgeon in February 2010. We have a busy beginning of the year next year and still have a dentist to see on Tuesday to see how many sets of braces I have to get between my son and daughter. Overall, Darein is doing well and we continue to work on so many number of issues. I am so proud of her each and every single day. What a brave little girl, even if she isn't dying right now :) Please cherish your children each and every one if you have them and if not then please remember a child in your thoughts and prayers. They are reliant on us as moms and dads and whether we like it or not they totally rely on us to make the best decisions for them. This can be too much some days for most parents. Talk about parents who worry they screwed up with normal healthy children, what a burden we must carry for our special needs children as they need us so much more. When you have a normal child you also have a certain balance to keep so as not to disrupt the balance of attention. God forbid, someone feel left out :) LOL Our children are our future, rely on us and our decisions.
Hope I don't mess up :)

High Expectations

Do you ever find that those days that you have the highest of expectations end up being the most disappointing of days? Well, that seems to usually be in my case as in my day yesterday. What a rollercoaster ride of a day I was on yesterday!
I was so excited for errand day to be here finally. I love errand day because that is the day that my husband finally has a day off, it is his payday and even though we have to run those tedious errands of paying bills and grocery shopping he always makes sure to include some fun by taking me out for breakfast or lunch and sometimes a little fun shopping even. I woke up this morning excited to start my day. I thought before I got ready I would take some time for about an hour to spend on my computer. My husband enjoys a little bit of alone time that he doesn't usually get at home and he likes watching the Today show so I thought before we started our day I would give him some space and clean up my Facebook page. Even though the laptop is mine and my daughters my son seems to think that ownership is in the power of the possessor and therefore keeps it in his room, which is fine though a little annoying at times. On this particular morning I left it in his room and decided to just log on. I was working on cleaning up my Facebook page and kept hearing a rattle of what sounded like a chip bag or something. I figured I was just a little paranoid because my daughter had said that she saw a mouse the day before run across the living room and down the hall into my son's room. Me and my husband had laughed at her but I promised to get some mouse traps. See, both me and my husband absolutely HATE mice! We can't even empty mouse traps and used to throw them away, trap and all. We hated having to deal with mice on those occasions when mice tend to try to get into homes, so much that we always usually kept a cat around or our big dog Trixie seemed to keep them at bay so that we haven't seen one in years. This has been a great thing about having our animals. However, this past year we gave our dog away to my brother as we were not home enough to give her the attention that she needed and deserved. Anyways, I got freaked out enough by the noise in the room that I decided to quickly get off the computer so that I could get out of there; but as I went to get out of my chair, the mouse darted out in the middle of the room scampering about very scared. Of course, I screamed and took off running and told my husband that in addition to getting the locking gas cap today the mouse traps were a must. I decided to be a big girl and buy gloves so that I can actually clean the mouse trap out instead of just throwing the whole thing away.
I went ahead and got ready and we looked over the bills we needed to pay real quick, grabbed some movies to return and headed for Shane's work. Now, my husband makes a decent living but it seems as though no matter what you make it just is never enough and by the time we figure up everything we need to pay, no matter how good it looks on paper there is never enough money to go around. We pick up his check and on our way to the bank we review how much money needs to be deposited. When I explain to my husband that on top of bill money needing to be deposited I also have jewelry that I have bought and need to deposit that money as well. This evidently hit him wrong today and so I get to hear for the next 15 minutes about how maybe I need to get a job to pay for the things that I want, etc. I explain to him that he gave me permission to spend this amount already. However, I do have to admit to being a little bit of a "space cadet" if you will. See, I do the budgeting but I always have to have my husband review it because inevitably I seem to forget those $50 things here and there that add up and then I can't figure out why in the world my paper budget doesn't match my actual budget. As usual, I have managed to remember after he gets paid and not prior to payday. We proceed to cash his check, get gas and decide where to eat. We end up eating a quiet lunch at Cracker Barrel as this is one of the few places where we can eat on Thursdays if we are running too late for a good breakfast, but not late enough for lunch. We finally decide to make the most out of the rest of our day, I receive an apology and we proceed to the bank. Once we are done at the bank it is just a matter of deciding if we are going to go ahead and get our license plates renewed this week still or if we have to move it back because of several things I left off of the budget. We know that we are going to Tulsa for the Thanksgiving holiday and I did budget a few extras in that I thought we had co-pays on for the week and we didn't so for the most part things were balancing out fairly well. We head to the license bureau in Buffalo as Shane has to return a logging chain to a friend that lives there. It is a small office so we figure we can get in and out easily without spending the whole day there. This works out very nicely and we get those errands ran. Shane then decides to go ahead and pay on the kids' layaway for Christmas so that we don't have that worry next week during Black Friday. We drive back into Springfield, take care of this matter and by this time I am starting to not feel very well at all. My stomach is cramping and I feel very gassy. We get the layaway paid on and Shane starts looking around. I am not feeling well and start to get a little moody so we leave and return our movie and decide to look for a new release, The Ugly Truth as we have been wanting to see that. We manage to get aggravated at each other again in the movie store, I am in quite a bit of pain by this point and so I head to the car while Shane checks out. He asks me if I am okay and I tell him that I am sure I will be fine. He wants to know if I want to go grocery shopping. I tell him yes, we need to go so we head to Harter House in Strafford which is close to our house. Shane offers to go inside while I sit out in the truck but I figure walking around might help. I have had this kind of pain recently but never this bad. We go into the store, do a little shopping and I start feeling like I am going to pass out, so Shane tells me to go on out to the truck. I sit out there doubled over while he finishes up and then we head home. By the time, he got out of the grocery store I was starting to recover fairly well. We got home and had just enough time to unload the groceries and put them up before having to leave to pick our daughter up from school. We get her picked up and decide to get Chinese takeout for dinner. I can only eat about 1/2 of mine before my pain returns full force again. I go ahead and set my mouse traps up and am quite excited to catch my mouse and have also learned how to use the locking gas cap and am thrilled about each of these new weapons. I am now ready to lay down for a little bit. My brother calls to check on me and I tell him how I feel and he insists once again as he did last week that it is my gallbladder and I need to go have it checked out and removed. He described my pain to a "T" but I tell him I am not thoroughly convinced and I don't have time to mess with that right now. I get off the phone and relay the message to Shane and he tells me that I need to schedule an appointment. I remind him that I don't really have a doctor that I like but my brother has St. John's docs as well and really likes his so maybe I should check into that. He tells me that he needs one too and wants me to put it on my agenda to get appointments set up. I argue with him and go to bed. A few hours later I get up, visit with him before he has to go to bed and then once he is asleep I put in my movie to end my evening and very disappointed that he missed out on getting to watch it with me.
All in all I guess the day was a success and everything managed to get accomplished. However, I always find it funny how it seems as though when we have the highest expectations for our day or for our relationships those are the times when they flop the most. If only I could learn to enjoy things as they happen and not have such high expectations maybe then I would find myself not so disappointed at the end of any given day; but then again, isn't that just part of life? :)

Wednesday, November 18, 2009

The Car Gas Tank Mystery

Well, things started about 3 weeks ago when my son was in a wreck in our Toyota Tacoma. My husband thought he would drive into Springfield to see what he could do to help my son, only to discover that there was no gas in the Jeep Cherokee. We never drive that vehicle as we haven't got it legal to drive yet but we thought that it had about a quarter of a tank of gas in it. I tried to think about it and thought maybe with us using it occasionally to take trash down to the dumpster that we had ran it out and hadn't realized it. We didn't give it another thought until we went to get new tires on the Tacoma. The tires we replaced on it were bigger than the ones that were on it before so we thought maybe it was affecting our gas mileage. We continued to watch it and then got to thinking that maybe our son was not putting all the money that we gave him for gas into the vehicle or that he was driving more than what he said that he was. We continued to watch and the problem persisted so we sent our daughter with him on one occasion. The truck had a quarter of a tank of gas in it when he left and when my husband got up the next morning to head to work the gas light was on. We questioned our daughter about it the next day and she said that our son went exactly where we had sent them. A few days later we went to return my mother-in-law's vehicle to her and drove forever on a quarter of a tank of gas. It was then that we decided our neighbor had to be the one that was stealing it. You might ask how we came to this conclusion. We came to this conclusion as we have not had a neighbor for the past 6 months and have had no problems at all. The new neighbor that has moved next door is an ex-military guy who has a knocked up girlfriend that is not working. He has a couple of girls from a previous marriage and works as a semi-truck mechanic at a local trucking company. He claims he only makes $170/week, got his truck repossessed the other day and says that his car is not far behind. He claims to have mental issues and I think that he probably does. My guess is that he probably can't afford the gas and definitely most likely has all the tools he needs to siphon gas easily and quickly. I will now be buying a locked gas cap and hope that this resolves the conflict without any confrontation on either party's part. If this doesn't solve the problem then I guess I will have to pull the video camera out and see what I can catch on video :)
This is my first entry and first time blogging so please be kind if you read :)