Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Trish Hi~ Your story sounds just like what is going on in my life.. My little Girl (AZALEIGH) also has PMG, she is corticaly blind and deaf. (nothing wrong with the eyes or ears) So to screams all the time... She is 6 months old. We do lots of therphy. Have even tried HBO but had to stop for awhile due to ear tubes. Azaleigh takes chloral hydrate to calm her, what is it that you give Lily? If you don't mind me asking.... Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Ruth, They never really told how how long she would do this. But they did say that maybe why she cries so much is because babies with her problems take pain to extreme. Like nipping her finger would make her fill like you just cut off her hole hand.. Does your Brittany have other problems? Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Trish HBO is hyperbaric oxygen treatments which is suppose to put more oxygen to the brain to active brain cells that are not active. As far as Azaleigh's meds, will I to did not want her to take them at first because they just knock her out. All she does is sleep when she takes them. Which is good for the cring but how is she ever going to learn to hold her head up, sit up, or anything else if she asleep all the time? Azaleigh also hated to ride in the car until she was put on this med. How did you find out your baby couldn't see? Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Tammy, It is not clear what she can and can not see. The neuro told us her brain is probably not processing what she sees correctly due to the PMG. Her EEG also shows hypo functioning. She doesn't look at me or return my smile, things my older child did at 1 month and now Lily is almost 5 months. I know she sees light and dark because she reacts to light. I don't know if she sees outlines or shadows. I try to stimulate her vision with black and white images. I know what you mean about stopping the crying but also well aware that if the baby spends all her time sleeping she will not be stimulated. That is why we waited for 2 months before medicating her at all. I have come to the conclusion that she wasn't learning or being stimulated when she cries her head off, so at least now she is well rested and calmer, so she is more apt to learn, at least that's what I think. She is awake 6-9 hours daily. Before it was so hard for her to sleep for any extended period of time. Trish > > Trish > HBO is hyperbaric oxygen treatments which is suppose to put more oxygen to the brain to active brain cells that are not active. > As far as Azaleigh's meds, will I to did not want her to take them at first because they just knock her out. All she does is sleep when she takes them. Which is good for the cring but how is she ever going to learn to hold her head up, sit up, or anything else if she asleep all the time? > Azaleigh also hated to ride in the car until she was put on this med. > How did you find out your baby couldn't see? > Tammy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 --- Oh god, they told me her reactions were magnified due to her disorder but without the detail you describe. I would do anything to help my baby. I can not imagine what she feels. Trish Lily's mom In polymicrogyria , Tammy Queen <TammyQ@d...> wrote: > > Ruth, > They never really told how how long she would do this. But they did say that maybe why she cries so much is because babies with her problems take pain to extreme. Like nipping her finger would make her fill like you just cut off her hole hand.. Does your Brittany have other problems? > Tammy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Trish~ so your baby doesn't smile either? Azaleigh don't. Can your baby hear? Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Ruth~ Hi! Can I have your email adress? I have so may questions? Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Lily hears in one ear and has 80% hearing loss in her left ear due to major damage to the right side of her brain, almost the entire hemisphere is missing. Again the neuro said it is uncertain how she processes what she hears. I will have her hearing tested next month. Lily does smile from time to time, just not in resonse to anything in particular. Lately it looks like she maybe responding to my husband when he talks to her. When I see her smile sometimes it brings tears to my eyes. I realize how much I took my older childs development for granted. Emilio was and continues to be a very happy child. Lily smiles so rarely it's a treat. > > Trish~ so your baby doesn't smile either? Azaleigh don't. > Can your baby hear? > Tammy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Trish, I'm cring just reading that, I wish Azaleigh would smile so bad....She is so pretty, just to see a smile to know she was happy for just a minute would make me so HAPPY. Tammy Quote Link to comment Share on other sites More sharing options...
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