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.