Wednesday, July 14, 2010

Searching for answers

I finally did it, I met with a new Dr. yesterday for Bug. I feel a renewed sense of hope that looking in to Bugs mysterious medical issues are going to be looked at again. I truly love our family doctor- Dr B. she has been wonderful and listened to my concerns and would direct me to different specialist hoping to find out a little piece of the puzzle. Then the results would come back negative or unanswered. Then we would hit a dead end and we were at a stand still with the specialist saying that their is nothing else we can do or they just don't know. I realize that we may come up with no answers again. The Lord created us so complex inside and out that who is man to truly understand all that their is to know with are amazing bodies.

This new Dr. A. was recommended by a friend who knows him quite well. He is a pediatric/ Behavior specialist. The best part of it is that he is a man who loves the Lord. It was so refreshing having a Dr. even say things like I hope you put Bug on your church prayer chain, because having a daughter with special needs is a challenge for her and the parents. Being able to not hold back and tell the Dr. some of the miracles that the Lord has done in Bugs life and not feeling like the Dr. thinks that you have a few screws missing up on top. Most Dr's wouldn't even take you serious.

  I can think of a time that I believe that if the Lord had not healed her ear that they may of diagnoised her with Kabuki syndrome. They wouldn't of then because this was way before we even did any of the genetic test or even had all the concerns besides dealing with the stroke issue. This is one thing that is common with the Kabuki syndrome is hearing lost all of a sudden. We had a therpist  who was coming into our home and they did hearing test also. The result were coming back that she was not hearing out of one ear. It was also something we where concerned about and had mentioned that she seemed to not to be hearing us and her surrondings. She has had a lot of problems with ear infections. When she was born and previous test she had passed the hearing test. After testing her hearing twice in two weeks they sent us to another place where they had a sound room and more sophisticated equipment. Then the next place she failed once and decieded to have me come back the following week to redue it just in case she was moving around to much or not comprehending the instructions. Which in my opionion she was very good and followed instructions. She informed me that if it is the same results next week she will recommend us seeing an Audiologist. The night before the test was a church night and the people brought her up front and layed hands on her and prayed for her and the situation. The next day the lady just barely put the part in her ear and it showed all kinds of vibrations and whatever else they see. I believe that the Lord healed her and I am not one of those type who goes around claiming it and healing it thing. The lady was absolutely surprised at the results and that she barely put it in her ear! I seen her face, then she said maybe the machine was not working or I the ear thing was not all the way in. Excuse after excuse. ( I don't remember what she called all the parts) It was just an odd converstation to have with a Dr.

He even knew of Kabuki syndrome, now that is a first among Dr's  most seem to not even know that it exist! I go back in a week after he reviews the medical records. He was concerned with her forgetting skills and staring episodes. Even though when we had done some testing and they said that she was not having any seizures. He said that their are different types that we can do that the first test may not of found. He wants to maybe revisit another Geneticist, even though Bug has not been diagnosed formerly with Kabuki Syndrome the last geneticist said that it could possible be some type of a variation of it. Bug does not have a lot of the typical features of a child with it. The deletion in her chromosome is a proposed candidate for the syndrome. I don't even know what I think of this syndrome and how it relates to Bug. I see some things when I look into it and other things I don't. Kabuki syndrome is considered a spectrum disorder, meaning the symptoms of it can be wide-ranging, from mild to severe. Experiences can vary wildly from one family to the other. I think the only thing that I can relate to at this point from the Dr's. is that she just may have something unknown. Who knows I just know that it is in my Lord's hands and I just am as confused as some of the Dr's.

I think the hardest thing of having a child with some kind of disability is not knowing. Not knowing what to expect the next year. I have to say that we are so much better off than so many families with children with special needs. In no way do I say this in a bad way so don't take any offense, please! I don't have to deal with feeding tubes, breathing and wheelchairs and so many other things. I am reminded of this so many times when I am at the hospital for Bug's therapies. My heart just breaks listening to the parent's talk to me about their children. It makes me feel so bad when I complain or cry over my troubles. I feel like I am a kid crying over spilled milk. It is keeps me on my knees at times focusing on other people's family's and not having a poor me attitude.

I don't know if we will find the answers to our mystery. I often hear don't worry about it, or why put a name to it. Does it matter if you know what it is? I am not a person who wears my feeling on her sleeves and I like others to be honest and not beat around the bush with me. I don't take comments to personal- I have to say that this does irritate me. It does matter-having questions answered about your child. Does it change Bug's situation if we know a name? Maybe or it may not change anything.Knowledge is understanding and I want to understand Bug for who she is and why she thinks or does things the way she does. I will keep you updated on this new journey of exploring are little mystery. May the Lord bless you and keep you.

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