Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 I know how you feel. Unfortunately, I think we all do. It WILL get better. They can put hearing aids on them. My little guy was 11 months when he got his. They are really tiny. This is a great group for support. Welcome! Tawnya Ian, 1, mild/mod , 3, hearing Intro from and Ricky >Hello everyone, > >thank you to the moderators for approving me into this >resourcefull group! I have already read some postings >and they have encouraged me alot as I am just in the >starting phase of this " adventure " ... > >Ricky is my little sweet prince who will be 7 months >on Dec.13th, he was born at 36 wks on May 13, 2004. >He has a 9 yr old brother Danny (born at 33 wks) and a >sister Olivia who will be 3 next month (she was a 34 >wker). My other two kids had very mild problems, >Ricky by far has the most, more than the two of them >combined! Including muscle tone issues and now very >probably hearing loss. > >He had an abnormal OAE and when he was being seen by >the neuro pediatrician on Monday she put a instrament >to his ear and I could not hear anythign, but inside >the istrament was a VERY loud peirceing sound... and >when put right up to his ear (both ears) he DID NOT >EVEN LOOK to see where it was comming from,he did not >even blink.... no reaction at all! It just broke my >heart when she said to me he likely has neurosensory >hearing loss.... going by her exam and the audiologist >report > >Ricky has always had this " offness " about him that I >knew something was up from birth, his birth was >traumatic which does not help matters (to get more >details on his conditions and his birth story please >visit my website in my signeture). > >Anyways long story short on the 16th I go for a CT >scan and to the ENT for the official diagnosis. The >CT scan is both for the hearing and for his global >developmental delays (he has sever gross and fine >motor delays, he just yesturday discovered his toes >for the first time, he still cannot roll over or sit >(even with assistance), etc.). > >The doctor on Monday says she thinks he will likely >need hearing aids. > >I'm just very much beside myself and feel very sad >that he has so many issues and now realize how much he >is living in silence. I always wondered why he never >reacted to his sibblings runnign aroudn and making a >noise and he just lays there without any expression, >and I wondered why he does not respond to alot of >things especially when there is just a little noise in >the room. He follows you well and looks at thigns and >is very social but now I realize how obvious it was >that he had a hearing problem but just did not want to >admit it. > >I was lookign for toys tonight for xmas and some >really cute things I wanted to get for Ricky, and they >were all with music or sound of some sort. I almost >lost it in the darn toy store!! It really breaks my >heart knowing he cannot hear. > >If it is that he needs a hearing aid, can they put it >on him this young? Can he really hear well with one >on? > >I know that I also have more testing for him, the >audiologist wants to do further testing (the test >where they sedate him) and afew other tests I think >she said, and I dont know what the ENT will do? > >Anyway any advice/suggestions/sharing of stories I'd >greatly appreciate! I am so new to this and I feel >alone and I feel guilty... I just dont know why but I >do. I feel this sence of loss myself if that makes >sence... I wish I could just snap my fingers and make >all this stuff go away and have my sweet boy without >any ailments!!! > >Anyway thank you for listening, and I look forward to >getting to know you all and your precious young >children! > >Hugs, > > >===== >SAHM to Danny (33wker now 9), Olivia (34wker now 2), >and Ricky (born May 13, 2004 at 36 wks!) >~i~ & Karina~i~ (Sept. 6/00) >***Visit Our Family Website*** >http://www.geocities.com/poohbear1252 > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 Hi , Thank you for sharing your story and feelings about your little boy. I know it must be pretty overwhelming at times for you. Feeling sadness and being afraid of the unknown future--sounds like you are going through a very normal grieving process. I said the word 'normal' because that is exactly what it is. You don't have to apologize or feel guilty about it. I suspect most of us here have experienced it too---some of us are still in the midst of it. You are not alone! Guilt seems to be an almost universal parental emotion, even among parents whose children have no challenges or 'ailments' out of the ordinary. I suppose we could be lost in questions of how we could have been better parents, or done something different to prevent hearing loss in our children, but my personal answer to this is that there is evil in the world, and bad things sometimes happen to innocent people. My son being deaf means that he's not the child I had before (or that I dreamed of having.) But, I still love him and he brings me joy in so many ways. Be patient with yourself. You are doing the best you can. As you work through the stages of grief, I hope you find the support you need along the way. Reaching out to other parents with deaf children is a good way to begin. I also admire you for keeping a journal about your 'premies' and sharing your experiences with other parents. I visited your website and all your children are beautiful. Thanks for sharing. Every good wish, Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2004 Report Share Posted December 2, 2004 , I'm a new member and relatively new to the hearing loss world, since my girls have just finally got their aids a couple months ago (they are 21 mos now and have mild/mod loss). I, too, am angry that they have this 'disability but also know I will learn to incorporate it into our lives just like anything else. Just today, as I was reading some postings from this group and the IL website mentioned earlier today, I broke down and sobbed -- first time ever re. this issue-- and I've known one girl had hearing loss for a year now! I looked at your website and read some of the info there, and just know from the few minutes I browsed there that you will do fine with this and little Ricky is in great care. FYI-my triplets were born at 30w5d and weighed 2-5, 3-1 and 3-1, so I know what it's like to be hospitalized pre-term (4 weeks for me) and spend endless weeks in the NICU (9 weeks was the longest). I look forward to having connections through this group, as it's so new to me, too. Edith Re: Intro from and Ricky Hi , Thank you for sharing your story and feelings about your little boy. I know it must be pretty overwhelming at times for you. Feeling sadness and being afraid of the unknown future--sounds like you are going through a very normal grieving process. I said the word 'normal' because that is exactly what it is. You don't have to apologize or feel guilty about it. I suspect most of us here have experienced it too---some of us are still in the midst of it. You are not alone! Guilt seems to be an almost universal parental emotion, even among parents whose children have no challenges or 'ailments' out of the ordinary. I suppose we could be lost in questions of how we could have been better parents, or done something different to prevent hearing loss in our children, but my personal answer to this is that there is evil in the world, and bad things sometimes happen to innocent people. My son being deaf means that he's not the child I had before (or that I dreamed of having.) But, I still love him and he brings me joy in so many ways. Be patient with yourself. You are doing the best you can. As you work through the stages of grief, I hope you find the support you need along the way. Reaching out to other parents with deaf children is a good way to begin. I also admire you for keeping a journal about your 'premies' and sharing your experiences with other parents. I visited your website and all your children are beautiful. Thanks for sharing. Every good wish, Charlotte Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hi , I am new here too. My son, Tyler, is 3 1/2. He was born in Vietnam and came home at 19 months. I knew pretty quickly that he was not the " healthy " referral I had received. Tyler has many issues aside from his profound hearing loss. He was able to sit up when he came home but that was it. He has made many gains but is still significantly delayed in many areas. Tyler had a trial period of hearing aids but didn't get anything from them. He has no residual hearing. In Nov. of 2003, he received a cochlear implant. He is doing well with it. He cannot speak yet but he does respond to noises and speech. Tyler is very small for his age. He has just recently grown to be the size of a 2 year old in height and a 1 year old in weight. I was surprised at how small his hearing aids were. I really wanted them to work for him like they do for so many kids but that wasn't to be. I too have feelings of sadness but not for me but for Tyler, although he is a very happy little boy. My sadness for him comes from the fact that he is not like the other children in his preschool classroom and I feel like he is missing out on some wonderful things. He does not interact very much with the other children although before he had the implant he didn't interact with them at all. Good luck with all the testing. Debi Mommy to Tyler __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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