Eye appt update: Theres a lot of reasons I have not posted lately ad that is bc I was trying to get over reeling from the outcome of the eye appointment from a few days ago and I did not yet want to have to admit how that appointment really went. Which was not good bc the doctor seems to think her symptoms do not match what the exams do. However, I find that ironic bc I think he just does not want to correct her vision bc it would require surgery. So we have done everything that he has suggested. He told us bifocals would not be good for her bc it would impact long or near vision and make one or the other worse (cannot remember which was which)and that they would not help bc at 1st , it was far vision that was blurry and doubled and it has now become near and far for a while now and so the last option he told us before he would even recommend surgery was eye ortho whatever it was called. As you guys may remember we went to that appointment and was told that the eye therapy would not work bc she has vision issues near and far and etc. So she had us make an apt back to our eye specialist and we went back to him and let him know the deal. We informed him of the changes that had started to happen like the grittiness in the eyes and the light sensitivity.(we noticed this in our first session of PT when we were there and she had to lie on her back and the lights were in her eyes this past week so we mentioned it). He calls her condition convergence insufficiency. We have known that for a while. Now you may remember way back when we went to our reg eye doctor, he told us that it could be the nerve in the brain that the eye uses bc in brain surgery it could damaged fairly easy but not usually the case or that it was her actual eyes at all. Well, I am a very annoying parent (and by annoying I mean I will ask anything that I think is going to put my mind at ease, that I think may be for Jazzys benefit. or something that I do not understand. Keep in mind i am blonde but in all reality, I expect to be able to ask questions and get an answer bc these kids are my life and my business.If a parent asking questions is too intimidating or a doctor gets offended, I am like a predator that becomes aware of something in the area (aka meaning maybe its something that my gut is telling me that I need to look more into bc the doctor should never be intimidated or mad at questions unless there is a reason. Or something to that effect. If a dr seems unconfident and like they are trying to convince me of something, you can bet I am less likely to trust them. Anyways, this is not about me but I am just trying to explain something....bc the doctor got very upset with Jazzy it seemed and he cut me off speaking, which i was like okay. I have really learned with doctors you cannot get upset emotional or anger wise because that will just mess up the communication on both ends. So I have really been working on my techniques when I speak w drs lol. can you tell? I am trying to learn patience too....its not going the best but I am doing alright but enough about me. So he stepped out and I told Jazzy, you have got to ask your questions to him once she said i dont understand what he is saying that my symptoms dont match my exam. Well, I have been trying to work w her too about asking her own questions and letting her do the explaining most of the time bc I know some drs think I should not be telling them, and I feel she should too and I can understand that. but she gets nervous, distracted, and freezes up when she cant remember or understand something (hence why we need speech therapy) and her communication is not always the best. It has decreased more in the last few months so anyways,....she was trying to talk to him and asking her questions and he explained okay and he seems very impatient with her. I still say nothing. She starts crying and he goes I cant tell you an answer and we may never be able to tell you an answer. So I realize she is 18 but a doctor shouldnt ever make anyone feel as hopeless as he did, at least in my opinion. So then I asked him a few questions and he seemed to get irked and I said I am only asking bc of what the previous eye doctor had stated and he goes and interrupts me and so I was like i am only asking because these issues have been going on and we just want to clarify a few things. I asked him why he wanted to try bifocals now after not wanting to even consider them for the last six months and he goes and says Because I am the doctor and Surgery is NOT an option and as if he was angry! I was taken aback and speechless to be honest. And I dont get speechless very often. So I waited a bit til I recovered and said I am the parent (very nicely bc I was so shocked at how he was that I was making sure to watch myself bc i know when I get angry how it can come across so i was very much concentrating on saying it non confrontational wise or like i had an attitude) and I am just curious I am not trying to do anything other than be informed and figure out how to help my kid.he replied and was still very irritated and left the room after saying I understand and then comes back in and says to Jazzy. well you are going for the record to be the patient that stays in my office the longest of all time, arent you which I also found offensive. (I will honestly say I think all Jazzys hosp records have us black listed and I know its not the case but I am not sure why we end up with doctors like this but then I remind myself its likely either the insurance or me and I am betting that it could be both. I tend to rub people the wrong way without even trying and the insurance, well its state insurance but i have no idea how all that works or what they get paid but I am sure its far less than the other insurances and yeah, that is my theory.) So then I asked him why would he say he was not doing surgery when surgery was not needed and he said well we have tried everything and nothing seems to be working but i will not recommend her surgery. it should correct itself. Couple of thoughts here on this and then I would LOVE to hear your thoughts and if you have state insurance in Oklahoma, we would love to know if you are able to get a second opinion. Or go to a different specialist. or what your thoughts are? 1.Should and normally are not things you will likely ever hear when it comes to Jazzy and her situation and health. Because just about every normally and likely and should are used for those that are not the exception to the rule. More times than not, she is that one exception in the medical field. 2. I was only asking questions because he has been the one telling us the same stuff for the past six months and what to expect. Never once did i want to look at surgery or ask for it or about it. If it meant surgery I would be devastated bc I do not want her to hurt or be cut on. But I also know if it meant that it was what was needed, and they have good reasons and can convince me it was needed, then she would ultimately be the decision maker on it just as she was on her brain surgery. Yes, I signed the papers but we listened to the doctor, asked our questions and I let her tell me her choice first and I agreed with her. So if it meant that it would help her get back to seeing like a normal person and that is what she wanted to do and I felt it was a legit reason to do it, then yes we would opt for it. In this day and age, parenting is something else. If you do too little, you are being neglectful and if you are supporting your kid and doing all you can to see their best interest is at hand then you are too involved and get criticized. Nothing matters as long as my kids know the real deal but its very frustrating to watch horrible parents do stupid things to make it harder for the parents who actually are really parents. But that is a whole other debate rofl. 3. When a doctor gets rude with my child and makes a snide hateful remark like that I have less faith and confidence that his intention is really to be there to help her. I do not know what his deal was, we had done and tried everything he suggested and her vision is even worse than the time he recommended not doing bifocals so now why was he wanting to do bifocals and so I asked that question and asked what if the bifocals do not work and why I was asking and confused. I sometimes think no matter how nice I try to be or how I try to phrase things, that I just rub people the wrong way. But honestly he is my kids doctor and I have the right to ask something if it is in her best interest or about her, and I dont feel i need to say sorry for that no matter what bc i am doing it with her best interest in my heart bc she is half of my heart. Good luck if you made it to the end of this post rofl. So anyways,I was happy to know we were not doing surgery but also scared bc this is a last resort because apparently he thinks very few people need surgery for this condition and that is fine by me BUT i want to make sure we get her help that she needs and get it fixed as much as we can. telling my kid she may not ever see good again broke her heart. Which broke my heart. As I told her, there is NEVER a time to give up. And we wont and I am praying so hard these bifocals work. As for the doctor, i am not sure his problem and in the grand scheme of things he is just another person who is helping her along her journey and even though he seems to be like one of the many doctors we encounter who act like their diagnosis is the only right one, we will add him to our journey,learn from his visits and pray we somehow find the answer bc there is one out there. As I told Jazzy, maybe they will invent the Hughey Syndrome bc of her. Of course i was joking but honestly, we are gonna keep on going. Quitting is not an option no matter how discouraging things get. *Luckily i did not post the day we had the appointment bc this post would have been far more not so chipper lol. We are over it now bc we have bigger issues and her legs and feet situation and being in the hospital has quite caught us all off guard bc it happened so quick and helped to distract us. Okay so now that has been updated. I would love to hear your feedback as long as it is in good intentions and tact lol. I am going on very little sleep and hope i have written this longgggg post clearly lol
Posted on: Sat, 16 Aug 2014 04:33:51 +0000