Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 Hi Marilyn!! Actually, no, Trinity doesn't have any hearing loss detected at this point. She failed her first test because of fluid in her ears. Once they placed tubes in she passed and she responds still to sound. I test her out now and then just from shear paranoia. The doc's all said that they still don't know a lot about CHARGE and things will likely pop up as she gets older. So I test her eyes and her hearing constantly. She has bilateral colaboma's so I know for sure she has vision loss but I think (hopefully) she lucked out and got her hearing. We probably won't know for sure if there hearing loss until she can actually tell us or at least that's my guess. I swear she sees pretty well though. Who knows??? We have placed several of her stations around the house (swing, bouncy, playmat) so that she has to turn to see things she hears. It has worked to some extent. Good idea with the mirror. Trinity has discovered her face in the mirror on her playmat set. She has seen herself in a full length at her therapy appointments but she's usually screaming and crying when her therapist takes her to it. Hmmmmmmmmmm, I'm thinking a full length maybe when she can sit up would be a good thing for her. Take Care, Mommy to Gracie 22 months (and crying at my side right now) and Trinity 6 months CHARGE Rick Ogan oganr@...> wrote: : Something else to think about: (I think you said Trinity has some hearing loss?) Hearing loss can effect neck development too. If an infant doesn't hear someone enter the room, they don't try to raise their head to find the source of the noise. I didn't realize that for a while; but we finally put her bed so she would see the door when we entered her room. She started working to move her head more when we did that. I also started playing peek-a-boo over the mattress edge once I made myself known in the room. I made sure she noticed I hadn't left, then she would try to turn her head more to the side because I wasn't leaning over her, but she knew I was there. Another thing my Dad did was make a stand for a full length mirror. It was constructed of PVC pipe and allowed the mirror to be on the floor. We'd put Krisitn beside it and she'd play by herself for a long time. That was when she first realized she had a body below her waist! She started playing with her feet and would kick with her legs. Before that, not much. That really helped her take leaps in her motor development. has pretty good range of motion in her neck now, even though she has some lingering torticulosis (sp?) issues. Just some thoughts and reflections that may or may not assist you. Friends in CHARGE, Marilyn Ogan _____ wrote: Trinity had a really good session at her physical therapy today for her tortacollus (sp?). She's finally getting more mobility in that neck so I'm hopeful in the next month or so she'll start rolling over. She tries now but I think the tightness in that neck is preventing her from doing so. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2007 Report Share Posted July 4, 2007 So good to know that her hearing is better. It all helps! My dad made the frame so the full length mirror was horizontal on the long side! (Less inclined to tip also.) Then could lie on the floor facing it and see all of her beautiful little body in it! Friends in CHARGE, Marilyn Ogan _____ From: CHARGE [mailto:CHARGE ] On Behalf Of Cook Sent: Wednesday, July 04, 2007 8:12 PM To: CHARGE Subject: Re: neck movements Hi Marilyn!! Actually, no, Trinity doesn't have any hearing loss detected at this point. She failed her first test because of fluid in her ears. Once they placed tubes in she passed and she responds still to sound. I test her out now and then just from shear paranoia. The doc's all said that they still don't know a lot about CHARGE and things will likely pop up as she gets older. So I test her eyes and her hearing constantly. She has bilateral colaboma's so I know for sure she has vision loss but I think (hopefully) she lucked out and got her hearing. We probably won't know for sure if there hearing loss until she can actually tell us or at least that's my guess. I swear she sees pretty well though. Who knows??? We have placed several of her stations around the house (swing, bouncy, playmat) so that she has to turn to see things she hears. It has worked to some extent. Good idea with the mirror. Trinity has discovered her face in the mirror on her playmat set. She has seen herself in a full length at her therapy appointments but she's usually screaming and crying when her therapist takes her to it. Hmmmmmmmmmm, I'm thinking a full length maybe when she can sit up would be a good thing for her. Take Care, Mommy to Gracie 22 months (and crying at my side right now) and Trinity 6 months CHARGE Quote Link to comment Share on other sites More sharing options...
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